Wednesday, January 20, 2010
Caelan is doing really well and January has put us right back into our chaotic schedule. We have appointments at home and visit OCTC every week. One week we have our sign language lesson and physiotherapy and the next week we have a session with the Blind Low Vision therapist and occupational therapy. Not to mention appointments with all the departments at CHEO
that follow him!!
All his therapy sessions are going great! Caelan is now sitting pretty much on his own. There are still lots of topples but that's expected. He's also able to put weight on his legs when pulled into a standing position. He's reaching for things with both hands and he'll reach across his body for objects, he'll transfer objects from one hand to the other, he's pulling things - and especially likes pulling his feed line to make the pump ring off, we'll call that learning cause and effect! He'll play "clean up" and place objects in a container, but prefers to throw them or watch them roll across the floor. He loves watching his sisters and playing with them and you can see that once mobile he'll never leave them alone! He's waving, clapping and shadow boxing and will slap his head in a "oh no" fashion... and yet no "mommy" sign!!! Despite all my efforts....
Caelan's gaining weight steadily and the dietician is cutting back his visits to every other week - that has to be a great sign!! Caelan was just under 20 lbs at his last visit which means we're moving him out of the baby bucket car seat and he's graduating to a toddler car seat.
He's made the tradition over to his new formula (Nutren Jr.) and tolerating it well. With this new formula came new volumes and meal times which he seems to be accepting. Instead of 6 feeds over 24 hours, he's down to four. This was more for our convenience since the new formula comes ready- made in a can. He requires four cans a day to meet his nutritional requirements and what's easier than popping open a can to prepare his feed!! This does mean that the volume he gets each feed is higher, about 100mL more each feed, which is significant for his little tummy. We also slowed down the rate to give his tummy a chance to get used to the higher volume of the new formula, which means it takes longer to get it into him. We've been slowly increasing the rate back to his previous norm and it's going well.
We've met with Cardiology and after a morning of tests they are confident that the small hole in Caelan's heart has closed. It's very difficult to tell and if that was their only concern they were comfortable following up with him in about 5 years! However because of Caelan's trach we will keep an annual appointment to monitor oxygen saturations and pumping pressures (or something like that!)
We've also followed up with Nephrology (kidney) and they're happy with Caelan's blood work and blood pressure. They'd like that STING done but understand the delay.
And the BIG NEWS....
We have a surgery date! February 9th Caelan will be admitted for his second fundoplication after which he will spend 3-4 nights recovering in hospital. Unfortunately they will be unable to do the STING procedure at the same time and that will have to be at a later date. With the relief of having a date for the surgery we've been waiting for comes an overwhelming feeling of anxiety and butterflies in the tummy knowing that your child will be going in for surgery again. It's so hard to explain this struggle, one that I'm sure all CHEO parents can relate to. For now we try and keep Caelan healthy and hope we don't have to postpone!
Monday, February 1, 2010
that follow him!!
All his therapy sessions are going great! Caelan is now sitting pretty much on his own. There are still lots of topples but that's expected. He's also able to put weight on his legs when pulled into a standing position. He's reaching for things with both hands and he'll reach across his body for objects, he'll transfer objects from one hand to the other, he's pulling things - and especially likes pulling his feed line to make the pump ring off, we'll call that learning cause and effect! He'll play "clean up" and place objects in a container, but prefers to throw them or watch them roll across the floor. He loves watching his sisters and playing with them and you can see that once mobile he'll never leave them alone! He's waving, clapping and shadow boxing and will slap his head in a "oh no" fashion... and yet no "mommy" sign!!! Despite all my efforts....
Caelan's gaining weight steadily and the dietician is cutting back his visits to every other week - that has to be a great sign!! Caelan was just under 20 lbs at his last visit which means we're moving him out of the baby bucket car seat and he's graduating to a toddler car seat.
He's made the tradition over to his new formula (Nutren Jr.) and tolerating it well. With this new formula came new volumes and meal times which he seems to be accepting. Instead of 6 feeds over 24 hours, he's down to four. This was more for our convenience since the new formula comes ready- made in a can. He requires four cans a day to meet his nutritional requirements and what's easier than popping open a can to prepare his feed!! This does mean that the volume he gets each feed is higher, about 100mL more each feed, which is significant for his little tummy. We also slowed down the rate to give his tummy a chance to get used to the higher volume of the new formula, which means it takes longer to get it into him. We've been slowly increasing the rate back to his previous norm and it's going well.
We've met with Cardiology and after a morning of tests they are confident that the small hole in Caelan's heart has closed. It's very difficult to tell and if that was their only concern they were comfortable following up with him in about 5 years! However because of Caelan's trach we will keep an annual appointment to monitor oxygen saturations and pumping pressures (or something like that!)
We've also followed up with Nephrology (kidney) and they're happy with Caelan's blood work and blood pressure. They'd like that STING done but understand the delay.
And the BIG NEWS....
We have a surgery date! February 9th Caelan will be admitted for his second fundoplication after which he will spend 3-4 nights recovering in hospital. Unfortunately they will be unable to do the STING procedure at the same time and that will have to be at a later date. With the relief of having a date for the surgery we've been waiting for comes an overwhelming feeling of anxiety and butterflies in the tummy knowing that your child will be going in for surgery again. It's so hard to explain this struggle, one that I'm sure all CHEO parents can relate to. For now we try and keep Caelan healthy and hope we don't have to postpone!
Monday, February 1, 2010
This is just a really quick update to let everyone know that Caelan is back in CHEO. He was admitted with a gastro (flu)after a long day in the emergency room yesterday.
We're keeping our fingers crossed that this won't affect the surgery planned for next week.
We're keeping our fingers crossed that this won't affect the surgery planned for next week.
Tuesday, February 2, 2010
Alright, another quick update before I head back in to CHEO.
Caelan is doing much better. No vomitting or diarrhea since Sunday afternoon. However he's also had no formula since Sunday morning... He started pedialyte yesterday on a very slow continuous feed that is being supplemented with an IV. He's tolerating that well and we've been able to increase the amount successfully every four hours. The hope is to start giving him some formula today.
There are concerns though. His blood work showed a high white blood cell count that would indicate an infection. It also showed higher levels of urea and creatnine, two indicators of a urinary tract infection. However they've taken two urine cultures and neither have grown anything to treat, ruling out the UTI. The blood tests also came back with an extremely high level of sodium that has everyone concerned. Caelan did receive three bags of saline in the ER because of his dehydration but it's my understanding that when you receive this your body needs it so badly it process it and absorbs it all so quickly there's nothing left. To have this residual high sodium level is a concern. They continue to do blood work twice a day (which doesn't go over well because he's been so dehydrated and isn't exactly an easy poke to begin with!) and all of these levels are going down slowly, which seems to back up this idea that it's just from the saline in the ER... but we need these levels much lower and it could take a while to get them all down to where they should be.
Caelan is still not himself though. He's not interested in anything, unless you consider throwing everything out of the crib as 'interested'. I should call him "Clean Sweep Caelan" since he does the same thing with his little play table at home and at OT! Maybe it's just being hungry and fed up with all the pokes. I know he's not impressed with his IV arm, which I know refer to as the battering ram. We're still waiting for a smile and that's how we know things aren't quite right yet.
This mornings report from the night nurse was good though, Caelan slept through the night with only a couple quick peaks to see who was about... probably when they checked his vitals!
Caelan is doing much better. No vomitting or diarrhea since Sunday afternoon. However he's also had no formula since Sunday morning... He started pedialyte yesterday on a very slow continuous feed that is being supplemented with an IV. He's tolerating that well and we've been able to increase the amount successfully every four hours. The hope is to start giving him some formula today.
There are concerns though. His blood work showed a high white blood cell count that would indicate an infection. It also showed higher levels of urea and creatnine, two indicators of a urinary tract infection. However they've taken two urine cultures and neither have grown anything to treat, ruling out the UTI. The blood tests also came back with an extremely high level of sodium that has everyone concerned. Caelan did receive three bags of saline in the ER because of his dehydration but it's my understanding that when you receive this your body needs it so badly it process it and absorbs it all so quickly there's nothing left. To have this residual high sodium level is a concern. They continue to do blood work twice a day (which doesn't go over well because he's been so dehydrated and isn't exactly an easy poke to begin with!) and all of these levels are going down slowly, which seems to back up this idea that it's just from the saline in the ER... but we need these levels much lower and it could take a while to get them all down to where they should be.
Caelan is still not himself though. He's not interested in anything, unless you consider throwing everything out of the crib as 'interested'. I should call him "Clean Sweep Caelan" since he does the same thing with his little play table at home and at OT! Maybe it's just being hungry and fed up with all the pokes. I know he's not impressed with his IV arm, which I know refer to as the battering ram. We're still waiting for a smile and that's how we know things aren't quite right yet.
This mornings report from the night nurse was good though, Caelan slept through the night with only a couple quick peaks to see who was about... probably when they checked his vitals!
Wednesday, February 3, 2010
We got smiles!!! and raspberries, and "oh no" slaps to the head!! Hooray, our Caelan is back, even if just for brief moments. He's still very tired but it was a relief to finally see "our boy."
Late yesterday morning we started his feed with a 50/50 mix of formula and pedialyte. He tolerated that well and they bumped him to a 75/25 mix and last night he went full formula and is still doing great. The feed has been running continuously at a very slow rate. The plan is to stop the continuous feeds this morning and start him on his normal feeding schedule at noon. Still no normal bowel movements to get that stool sample the doctors want.
His sodium, urea and creatnine levels continue to come down. Today they will re-check those levels again as well as checking the white blood cell count.
Unfortunately despite having a good nights sleep again last night, Caelan did run a fever?!?! Not sure what that means...
Late yesterday morning we started his feed with a 50/50 mix of formula and pedialyte. He tolerated that well and they bumped him to a 75/25 mix and last night he went full formula and is still doing great. The feed has been running continuously at a very slow rate. The plan is to stop the continuous feeds this morning and start him on his normal feeding schedule at noon. Still no normal bowel movements to get that stool sample the doctors want.
His sodium, urea and creatnine levels continue to come down. Today they will re-check those levels again as well as checking the white blood cell count.
Unfortunately despite having a good nights sleep again last night, Caelan did run a fever?!?! Not sure what that means...
Thursday, February 4, 2010
Yesterday Caelan was even more like himself. It's wonderful!
At noon yesterday we started back to feeding on more of a bolus schedule. We started with a lower volume and lower rate and as tolerated we increased each of those. At his 6pm feed we gave him the full volume that he usually gets at home at a slightly lower rate. The plan was that if tolerated he should be coming home tonight.
Not sure that's going to happen now as Caelan had a bit of an unsettled night with several bouts of diarrhea and vomitted mouthfuls of saliva/mucus - no milk- a few times. He's also running a fever again. I'm not sure if that would be called tolerating, so we'll see what they say today.
When things were going so well yesterday the IV was taken out, after which Caelan finally let me hold him and snuggled off to sleep. He hasn't let me hold him since getting in the hospital. He's never been a real snuggly boy and it's not particularly easy with all the "stuff" he's attached too, but every attempt resulted in him pushing off me and arching his back like a wild boy. It was a great Mommy moment to finally get a little snuggle in!
Oh, and I almost forgot... the blood work done yesterday showed that his white blood cell count was back in the normal range (from 26 to 9), his urea and creatnine were both lower again, and sodium now a high normal too (from 159 initially to 144)!!
At noon yesterday we started back to feeding on more of a bolus schedule. We started with a lower volume and lower rate and as tolerated we increased each of those. At his 6pm feed we gave him the full volume that he usually gets at home at a slightly lower rate. The plan was that if tolerated he should be coming home tonight.
Not sure that's going to happen now as Caelan had a bit of an unsettled night with several bouts of diarrhea and vomitted mouthfuls of saliva/mucus - no milk- a few times. He's also running a fever again. I'm not sure if that would be called tolerating, so we'll see what they say today.
When things were going so well yesterday the IV was taken out, after which Caelan finally let me hold him and snuggled off to sleep. He hasn't let me hold him since getting in the hospital. He's never been a real snuggly boy and it's not particularly easy with all the "stuff" he's attached too, but every attempt resulted in him pushing off me and arching his back like a wild boy. It was a great Mommy moment to finally get a little snuggle in!
Oh, and I almost forgot... the blood work done yesterday showed that his white blood cell count was back in the normal range (from 26 to 9), his urea and creatnine were both lower again, and sodium now a high normal too (from 159 initially to 144)!!
Friday, February 5, 2010
ok, not tolerating. Caelan was back to vomitting/diarrhea yesterday and we had to stop the formula feed. We went back to pedialyte that he seems to be taking well and staying hydrated enough that we've held the IV team at bay.
Poor little guy had blood work three times yesterday in an effort to figure things out and keep an eye on things. In the morning the decision was to re-IV him. I gave them one try, which didn't work since he's so bruised up from all the other pokes. He was keeping the pedialyte down on a slow continuous feed so they were willing to hold off on the IV for a bit to see how he did.
Good news this morning is that last night was much better than the night before, he slept well, no vomitting and no diarrhea.
We met with a nutritionist yesterday and are going to try a different formula when he's ready to go back on a milk based one. So hopefully today we'll give that a try, very slowly and probably mixed with the pedialyte for a while... no talk of going home now...
Poor little guy had blood work three times yesterday in an effort to figure things out and keep an eye on things. In the morning the decision was to re-IV him. I gave them one try, which didn't work since he's so bruised up from all the other pokes. He was keeping the pedialyte down on a slow continuous feed so they were willing to hold off on the IV for a bit to see how he did.
Good news this morning is that last night was much better than the night before, he slept well, no vomitting and no diarrhea.
We met with a nutritionist yesterday and are going to try a different formula when he's ready to go back on a milk based one. So hopefully today we'll give that a try, very slowly and probably mixed with the pedialyte for a while... no talk of going home now...
Saturday, February 6, 2010
What a crazy day yesterday was! It was like Caelan had all his unused energy from the week to use up. He was awake and happy all day from 6am until 9:30pm, except for two 20 minute (and that's being generous) power naps!!! We played, and played and played... in the exersaucer, on the floor mat, and all over the crib! All the while tolerating a 50/50 mix of pedialyte and the new formula peptomen. The feed ran at a continuous rate of 40 and there was no vomitting and no diarrhea - in fact he even had a few normal bowel movements!!
He slept through the night and this morning they've increased the mix to 75/25 of the formula/pedialyte. If he tolerates this as well as the 50/50 the plan is to go pure peptomen tomorrow... Keeping our fingers crossed.
He slept through the night and this morning they've increased the mix to 75/25 of the formula/pedialyte. If he tolerates this as well as the 50/50 the plan is to go pure peptomen tomorrow... Keeping our fingers crossed.
Monday, February 8, 2010
Caelan had a great weekend! He's tolerating his feeds of 100% formula on a continuous rate of 40 mL/hour. He still has tons of energy and may be going a bit stir crazy.
Today we're hoping to start increasing the rate to get a break from the continuous feed. I'm also hoping to have a visit from surgery with a decision on the fundoplication scheduled from tomorrow. I hope they feel he's ready to go ahead with it. But if he isn't, well then he isn't and we'll just have to reschedule. If postponed I think it will mean that Caelan will be on a much slower rate for a while and feeding for more of the day to prevent the vomiting caused by the reflux.
Today we're hoping to start increasing the rate to get a break from the continuous feed. I'm also hoping to have a visit from surgery with a decision on the fundoplication scheduled from tomorrow. I hope they feel he's ready to go ahead with it. But if he isn't, well then he isn't and we'll just have to reschedule. If postponed I think it will mean that Caelan will be on a much slower rate for a while and feeding for more of the day to prevent the vomiting caused by the reflux.
Monday, February 8, 2010
Argh! Surgery is postponed... Earlier this morning it looked like a go, and then the surgeon and anasthesia discussed it and it's off until the virus is through with Caelan... or Caelan is through with the virus... Although he's not vomitting he is still having more frequent, looser bowel movements which are evidence that he's still fighting this nasty bug.
We have suggestions from the nutritionist on how to move forward on his feeds. This afternoon we'll be trying a rate of 50ml/hour to a volume of 120, so he'll feed for just over two hours and then be off about 45minutes and repeat. We'll see how he handles that. We can't risk him starting to vomit again with his continuing diarrhea (or sort of diarrhea!?!?) We'll keep him at that rate until tomorrow and then decide what the next step will be. We know that we can't go too quickly or Caelan will throw the plan out the window. I've already mentioned that I don't think we'll get higher than 60 ml/hour without vomitting so I think that's basically what we're aiming for, which means he's going to spend a lot of time feeding until we get that fundo. Hopefully the Operating Room has some empty time slots just waiting for Caelan's tummy to feel better in the next couple weeks... how's that for Mommy being optimisitc!! :)
Caelan's great mood continues, as does his energy level and his flirtations with anyone who walks in his room!! You'd never know he still had this bug wreaking havoc on his tummy!!
We have suggestions from the nutritionist on how to move forward on his feeds. This afternoon we'll be trying a rate of 50ml/hour to a volume of 120, so he'll feed for just over two hours and then be off about 45minutes and repeat. We'll see how he handles that. We can't risk him starting to vomit again with his continuing diarrhea (or sort of diarrhea!?!?) We'll keep him at that rate until tomorrow and then decide what the next step will be. We know that we can't go too quickly or Caelan will throw the plan out the window. I've already mentioned that I don't think we'll get higher than 60 ml/hour without vomitting so I think that's basically what we're aiming for, which means he's going to spend a lot of time feeding until we get that fundo. Hopefully the Operating Room has some empty time slots just waiting for Caelan's tummy to feel better in the next couple weeks... how's that for Mommy being optimisitc!! :)
Caelan's great mood continues, as does his energy level and his flirtations with anyone who walks in his room!! You'd never know he still had this bug wreaking havoc on his tummy!!
Tuesday, February 9, 2010
The plan is to bring Caelan home tomorrow. He'll be coming home on a much slower rate which means he'll be spending a lot more of his day feeding, but he's tolerating it well... and he's coming HOME! ... That is assuming he agrees with the plan. He's quite the social boy, flirting with all the nurses and anyone who pops their head into his room. He might find it boring to be stuck home with Mom again!
Unfortunately looks like his surgery won't be rescheduled until sometime in March...
Unfortunately looks like his surgery won't be rescheduled until sometime in March...
Thursday, February 11, 2010
Just wanted to reassure everyone that Caelan did come home yesterday afternoon. As always discharge procedures took forever!! I think he was happy to get home, especially since on the way home we had to stop at the pharmacy to pick up new formula and medications, making the trip home that much longer. I know that we were all very happy to have him home. His little face lit up when his sisters came home from school and after a great nights sleep he's been travelling all over the living room getting reacquainted with all of his toys.
Not much of a rest at home though. We have to visit our pediatrician within 48 hours of discharge and we have an appointment tomorrow afternoon for another RSV shot.
Not much of a rest at home though. We have to visit our pediatrician within 48 hours of discharge and we have an appointment tomorrow afternoon for another RSV shot.
Monday, February 15, 2010
Well I can't say that it's been smooth sailing since Caelan got home... Friday we did get in to see his pediatrician and got all our prescriptions in order and confirmation that all looked good. He had a long day Friday; he woke up at 7:30, a good hour earlier than normal, and because we were out and about all day he only had a 30 minute nap in the van. It didn't surprise us in the evening when he was getting a little cranky because we expected him to be tired and in need of an early night.
We were also playing with his feeds a little, trying to work out a schedule where we fed him continuously over night and then three smaller feeds during the day so that he would still have some time off the pump.
Friday night when I started his night feed around 8:30 I also gave him his antibiotic that he always takes to ward off all those evil UTIs... he immediately shoved his hand down his throat, gagged and started vomitting mouthfuls of saliva and mucus. Not good. I really thought he was just overtired and wondered if the antibiotic was a little too strong on an empty tummy that was still a little out of whack. We had a little snuggle in the rocker and he'd drop off to sleep but as soon as I went to put him back in his crib he'd shove his hand back down his throat and we'd start all over. Thinking he just needed a deeper sleep before going back in his crib we left him in our nurses capable arms and went to bed. However when we got up in the morning we discovered that there was something wrong. Caelan didn't tolerate his formula over night, only keeping down half of what he would normally get and spent most of the night awake and miserable. Before we could get some pedialyte Caelan started vomitting a brown syrup and that made up our mind that we were off to CHEO. After abdominal and chest x-rays it was determined that the poor little guy was constipated. The new formula requires that we give Caelan a lot more water throughout the day to keep everything moving. Well, one enema and about three minutes later the problem was solved. The emergency room doctors were happy with the results and we were sent home.
On our way home we stopped to buy some pedialyte and began him on a continuous feed of that before going back to his formula. He fell asleep around four o'clock in the afternoon and slept through the night, and well into the next morning... hmmm... ok we know he didn't have a good night the night before but this seems a little unusual. We were up with him all night as well because we didn't have a nurse and Caelan ran a mild fever that we treated with tylenol. Damian also thought that the urine in of one of the diapers he changed seemed off, almost thick?! Our fears of a UTI grew as the day went on and our little guy was so unbelievably lethargic. He was only awake an hour in the morning in which time he never smiled or made any attempt at play or movement before he was back asleep. He definitely was not himself and by early afternoon we were headed back to CHEO, this time Damian stayed home with the girls and Gramma came with us.
By the time we reached the hospital I was a little concerned with his breathing as well. Caelan seemed to be putting a lot more effort into it, more nasal flaring than I'd noticed in the morning and normally there isn't any. Once on the monitor his oxygen saturations weren't as good as normal either, only low 90's instead of 99-100. After a few saline masks we were around 95 and his heart rate had come down a bit too. They also gave him a dose of tylenol upon our arrival because his fever was back.
Then after a while it was like he flipped a switch. All of a sudden there was a smile, then a raspberry, followed by some crazy kicks like he was trying to run out of there, hip thrusts and "oh no" slaps to the head weren't far behind. All this in less than 2 minutes!! Neither Gramma or I could believe our eyes. This wasn't the boy we brought in, this was Caelan and he was back. Phew.
Not really sure what caused the turn around, but I've never been more relieved to have my son spit a raspberry at me!! He proceded to get into everything he could and when the resident who first saw him at his worst came back in with the doctor, I think he was a little surprised and not sure what to make of it either. He immediately took back his earlier statement that we were probably not taking him home tonight!
They did take a urine sample and preliminary results showed no infection :) They also gave him an epinephrin mask, a steroid to help with his breathing because they thought they may have heard a slight wheeze when listening with the stethescope. No real diagnoses or conclusion other than perhaps he picked up a little something the day before. If I was comfortable taking him home we were free. You didn't have to tell ustwice, we packed up and headed home.
Caelan had a good night sleep again last night and this morning he did seem a little off. Lazy almost, not interested in much and smiles were hard to come by. Thankfully in the last hour or so he's been back to himself, scootching all over the living room and getting into all sorts of trouble!! Smiles are the most wonderful thing - that and finally spending a day with all of us at home... great way to spend Family Day, all together at home!
We were also playing with his feeds a little, trying to work out a schedule where we fed him continuously over night and then three smaller feeds during the day so that he would still have some time off the pump.
Friday night when I started his night feed around 8:30 I also gave him his antibiotic that he always takes to ward off all those evil UTIs... he immediately shoved his hand down his throat, gagged and started vomitting mouthfuls of saliva and mucus. Not good. I really thought he was just overtired and wondered if the antibiotic was a little too strong on an empty tummy that was still a little out of whack. We had a little snuggle in the rocker and he'd drop off to sleep but as soon as I went to put him back in his crib he'd shove his hand back down his throat and we'd start all over. Thinking he just needed a deeper sleep before going back in his crib we left him in our nurses capable arms and went to bed. However when we got up in the morning we discovered that there was something wrong. Caelan didn't tolerate his formula over night, only keeping down half of what he would normally get and spent most of the night awake and miserable. Before we could get some pedialyte Caelan started vomitting a brown syrup and that made up our mind that we were off to CHEO. After abdominal and chest x-rays it was determined that the poor little guy was constipated. The new formula requires that we give Caelan a lot more water throughout the day to keep everything moving. Well, one enema and about three minutes later the problem was solved. The emergency room doctors were happy with the results and we were sent home.
On our way home we stopped to buy some pedialyte and began him on a continuous feed of that before going back to his formula. He fell asleep around four o'clock in the afternoon and slept through the night, and well into the next morning... hmmm... ok we know he didn't have a good night the night before but this seems a little unusual. We were up with him all night as well because we didn't have a nurse and Caelan ran a mild fever that we treated with tylenol. Damian also thought that the urine in of one of the diapers he changed seemed off, almost thick?! Our fears of a UTI grew as the day went on and our little guy was so unbelievably lethargic. He was only awake an hour in the morning in which time he never smiled or made any attempt at play or movement before he was back asleep. He definitely was not himself and by early afternoon we were headed back to CHEO, this time Damian stayed home with the girls and Gramma came with us.
By the time we reached the hospital I was a little concerned with his breathing as well. Caelan seemed to be putting a lot more effort into it, more nasal flaring than I'd noticed in the morning and normally there isn't any. Once on the monitor his oxygen saturations weren't as good as normal either, only low 90's instead of 99-100. After a few saline masks we were around 95 and his heart rate had come down a bit too. They also gave him a dose of tylenol upon our arrival because his fever was back.
Then after a while it was like he flipped a switch. All of a sudden there was a smile, then a raspberry, followed by some crazy kicks like he was trying to run out of there, hip thrusts and "oh no" slaps to the head weren't far behind. All this in less than 2 minutes!! Neither Gramma or I could believe our eyes. This wasn't the boy we brought in, this was Caelan and he was back. Phew.
Not really sure what caused the turn around, but I've never been more relieved to have my son spit a raspberry at me!! He proceded to get into everything he could and when the resident who first saw him at his worst came back in with the doctor, I think he was a little surprised and not sure what to make of it either. He immediately took back his earlier statement that we were probably not taking him home tonight!
They did take a urine sample and preliminary results showed no infection :) They also gave him an epinephrin mask, a steroid to help with his breathing because they thought they may have heard a slight wheeze when listening with the stethescope. No real diagnoses or conclusion other than perhaps he picked up a little something the day before. If I was comfortable taking him home we were free. You didn't have to tell ustwice, we packed up and headed home.
Caelan had a good night sleep again last night and this morning he did seem a little off. Lazy almost, not interested in much and smiles were hard to come by. Thankfully in the last hour or so he's been back to himself, scootching all over the living room and getting into all sorts of trouble!! Smiles are the most wonderful thing - that and finally spending a day with all of us at home... great way to spend Family Day, all together at home!
Monday, February 22, 2010
We have a very busy boy on our hands. He never stops and is always on the move - well to the extent that being attatched to a feeding pump allows you to be!! He's all smiles now and full of mischief. We're having a great time. I must admit though it's a little scary (in a good way) to think of him walking/running and getting into even more trouble!!
Feeds are still running continuously and we switched back to the Nutren Jr. after he went four days without a poop while on the Peptamen. I'm not really convinced that it was the food. I think it had more to do with getting that enema so soon after the gastro when his system was already so out of whack it just made it even worse. Don't really want to fool around now though.
Caelan is also on antibiotics because his pediatrican was concerned with his continued extra effort in breathing. His resp rate had increased and he had more nasal flaring than ever. He was worried about possible aspiration pneumonia again. There was definitely something he was fighting and is doing much better now.
We also have a new date for the fundo surgery - March 9th. Exactly one month from when it was supposed to take place. While speaking with the surgery scheduler I also mentioned that STING that Caelan was supposed to get back in October before the hospital was flooded with H1N1. Well we're tentatively on the list for April!!
This week is a pretty busy one. We had our first sign language lesson in almost a month... it doesn't take long to forget, arg! Caelan sure remembered our teacher and greeted her with big smiles and then scootched himself over to try and go through her purse!! I'm telling you, he's into everything!!
Tomorrow the dietician comes in the morning and in the afternoon we're off to see audiology and ENT. Audiology will check his hearing to ensure that the good ear isn't deteriorating and the plan in ENT is to do another scope and see if those vocal cords have decided to move at all. I'm not expecting the vocal cords to move but if they are that would be absolutely amazing. I can't even find the words to explain what that would mean to him and our family if he didn't have to have the trach.
Feeds are still running continuously and we switched back to the Nutren Jr. after he went four days without a poop while on the Peptamen. I'm not really convinced that it was the food. I think it had more to do with getting that enema so soon after the gastro when his system was already so out of whack it just made it even worse. Don't really want to fool around now though.
Caelan is also on antibiotics because his pediatrican was concerned with his continued extra effort in breathing. His resp rate had increased and he had more nasal flaring than ever. He was worried about possible aspiration pneumonia again. There was definitely something he was fighting and is doing much better now.
We also have a new date for the fundo surgery - March 9th. Exactly one month from when it was supposed to take place. While speaking with the surgery scheduler I also mentioned that STING that Caelan was supposed to get back in October before the hospital was flooded with H1N1. Well we're tentatively on the list for April!!
This week is a pretty busy one. We had our first sign language lesson in almost a month... it doesn't take long to forget, arg! Caelan sure remembered our teacher and greeted her with big smiles and then scootched himself over to try and go through her purse!! I'm telling you, he's into everything!!
Tomorrow the dietician comes in the morning and in the afternoon we're off to see audiology and ENT. Audiology will check his hearing to ensure that the good ear isn't deteriorating and the plan in ENT is to do another scope and see if those vocal cords have decided to move at all. I'm not expecting the vocal cords to move but if they are that would be absolutely amazing. I can't even find the words to explain what that would mean to him and our family if he didn't have to have the trach.
Friday, February 26, 2010
What a trooper! Despite everything that Caelan's been through in the past month he still managed to gain a pound!! He's up to 21 lbs. and he's stretched himself out to 81 cm long. Now the length thing is always a 'give or take a few' since it's near impossible to get an accurate measurement on such a wriggle bum!
Caelan did great in audiology this week, passed with flying colours on his big boy hearing test. We are very happy to know that his right ear is still hearing in the normal range.
In ENT he did have the scope to check if his vocal cords were moving and as much as I didn't expect them to move it was still disappointing to see. We won't scope again for another year or so, after which if there's still no movement we'll begin to discuss other permanent options. Everything else looked great and we don't have a follow up visit for 6 months!!!
Caelan did great in audiology this week, passed with flying colours on his big boy hearing test. We are very happy to know that his right ear is still hearing in the normal range.
In ENT he did have the scope to check if his vocal cords were moving and as much as I didn't expect them to move it was still disappointing to see. We won't scope again for another year or so, after which if there's still no movement we'll begin to discuss other permanent options. Everything else looked great and we don't have a follow up visit for 6 months!!!
Monday, March 8, 2010
ARGH! The frustration!!! I could scream!!!
This morning I thought about writing on this website about how prepared we were for Caelan's hospital stay this time around. How different it is knowing ahead of time that your child will be going in for surgery and staying so many days to recouperate before coming home. You're not only mentally prepared but you get other things taken care of ahead of time too. For example, I've spent the past two days making meals for the freezer for this week because the last thing you want to think about while at the hospital is what you're going to make for dinner!
However the one thing I wasn't prepared for was the phone call I got this afternoon. Less than 24 hours before Caelan's scheduled surgery I got the call that there wasn't a bed available in the Intensive Care Unit (ICU) for Caelan post op. I don't know why I didn't really give this much thought this time around, perhaps I should have and I wouldn't have been so disappointed today. No bed for Caelan means no surgery. Postponed again, hence the frustration! Think about it; STING scheduled for October 2009 - postponed, STING rescheduled for Nov. 2009 - postponed and still not officially rescheduled, fundo scheduled for Feb 2010 - postponed, fundo rescheduled for March 2010 - postponed... I'm really not liking this pattern!!
As upsetting as it all is I know that this is completely unavoidable. Emergencies happen. I can guarantee that all of the children in those ICU beds would gladly give up their place to be home and healthy.
I feel like I've been a crazy banshee these past few weeks in an effort to keep our son healthy for this surgery, and he is healthy... I feel like we kept up our end of the bargain but that CHEO let us down. Probably not a fair statement but it's really disappointing. Caelan needs this surgery, I don't think it's accurate to call this an elective surgery. He's feeding continuously at a ridiculously slow rate and still refluxing and vomitting all day. There's only so much I can do to prevent this. He's an active and curious boy who doesn't stop all day and it wouldn't be fair for me to have him on his 45 degree angled mattress to minimize his reflux. Not only is it not fair, it wouldn't help his development nor would he tolerate it and besides all that I'm not convinced that it would even help that much since he refluxes/vomits in bed now anyway!!!
I know this is a bit of a rant. I thought I may have mellowed out a bit over the course of the afternoon and a couple glasses of wine with dinner, but apparently not so much! argh...
This morning I thought about writing on this website about how prepared we were for Caelan's hospital stay this time around. How different it is knowing ahead of time that your child will be going in for surgery and staying so many days to recouperate before coming home. You're not only mentally prepared but you get other things taken care of ahead of time too. For example, I've spent the past two days making meals for the freezer for this week because the last thing you want to think about while at the hospital is what you're going to make for dinner!
However the one thing I wasn't prepared for was the phone call I got this afternoon. Less than 24 hours before Caelan's scheduled surgery I got the call that there wasn't a bed available in the Intensive Care Unit (ICU) for Caelan post op. I don't know why I didn't really give this much thought this time around, perhaps I should have and I wouldn't have been so disappointed today. No bed for Caelan means no surgery. Postponed again, hence the frustration! Think about it; STING scheduled for October 2009 - postponed, STING rescheduled for Nov. 2009 - postponed and still not officially rescheduled, fundo scheduled for Feb 2010 - postponed, fundo rescheduled for March 2010 - postponed... I'm really not liking this pattern!!
As upsetting as it all is I know that this is completely unavoidable. Emergencies happen. I can guarantee that all of the children in those ICU beds would gladly give up their place to be home and healthy.
I feel like I've been a crazy banshee these past few weeks in an effort to keep our son healthy for this surgery, and he is healthy... I feel like we kept up our end of the bargain but that CHEO let us down. Probably not a fair statement but it's really disappointing. Caelan needs this surgery, I don't think it's accurate to call this an elective surgery. He's feeding continuously at a ridiculously slow rate and still refluxing and vomitting all day. There's only so much I can do to prevent this. He's an active and curious boy who doesn't stop all day and it wouldn't be fair for me to have him on his 45 degree angled mattress to minimize his reflux. Not only is it not fair, it wouldn't help his development nor would he tolerate it and besides all that I'm not convinced that it would even help that much since he refluxes/vomits in bed now anyway!!!
I know this is a bit of a rant. I thought I may have mellowed out a bit over the course of the afternoon and a couple glasses of wine with dinner, but apparently not so much! argh...
Tuesday, March 9, 2010
I am excited to report that we already have our rescheduled dates - that's right I said date-S!!!
Our surgeon has scheduled extra surgery time specifically for Caelan, which makes me feel a little better... like he feels this is a priority too. Soooo in two weeks on March 25, presuming there are beds in the ICU and Caelan is healthy he will have his fundoplication redone!
AND Caelan is also officially scheduled to have the infamous STING procedure on April 15th!!
I was having a pretty grumpy day waiting for these dates. I called at 9am this morning and was trying to wait patiently for the call back, but getting more anxious by the minute for fear that we might be waiting months!! Caelan on the other hand is doing wonderfully, it's like he knows that he was supposed to have surgery today and is celebrating his escape!! He really is a crazy little boy and it's hard to have too grumpy a day when he's around!!!
Once again though I feel the added pressure to keep Caelan extra healthy. I don't want him growing up in a bubble. I want him to gain immunity for lots of bugs, to be able to play and interact like every other child... but for the next two weeks I would love to have a bubble for him to keep all those nasty germs away!!
I guess the crazy banshee that I mentioned last post only had one evening off!
"Have you washed your hands?"
"Don't forget to use soap!"
"Please don't touch him until you wash your hands"
"Could you please take your hands off his face"
"Please go wash your hands"
"Don't let him put his hands in your mouth!"
etc. etc. etc...
Our surgeon has scheduled extra surgery time specifically for Caelan, which makes me feel a little better... like he feels this is a priority too. Soooo in two weeks on March 25, presuming there are beds in the ICU and Caelan is healthy he will have his fundoplication redone!
AND Caelan is also officially scheduled to have the infamous STING procedure on April 15th!!
I was having a pretty grumpy day waiting for these dates. I called at 9am this morning and was trying to wait patiently for the call back, but getting more anxious by the minute for fear that we might be waiting months!! Caelan on the other hand is doing wonderfully, it's like he knows that he was supposed to have surgery today and is celebrating his escape!! He really is a crazy little boy and it's hard to have too grumpy a day when he's around!!!
Once again though I feel the added pressure to keep Caelan extra healthy. I don't want him growing up in a bubble. I want him to gain immunity for lots of bugs, to be able to play and interact like every other child... but for the next two weeks I would love to have a bubble for him to keep all those nasty germs away!!
I guess the crazy banshee that I mentioned last post only had one evening off!
"Have you washed your hands?"
"Don't forget to use soap!"
"Please don't touch him until you wash your hands"
"Could you please take your hands off his face"
"Please go wash your hands"
"Don't let him put his hands in your mouth!"
etc. etc. etc...
Thursday, March 18, 2010
Yesterday was a day for remembering and celebrating. It was one year ago that we brought our little boy home from the hospital for good!
Looking back and remembering that little boy was quite overwhelming for me. Eye opening. It's amazing how much he's changed. He's still the same strong minded happy boy, but there are so many more smiles now! I think I could easily say he's more strong minded now too-- He's got a temper like I've never seen! He definitely knows what he wants and will let anyone know who stands in his way! He's more determined than ever and I think that's a really great quality for him to have.
Caelan has been making amazing progress on his 'pony' walker and is chasing his sisters all over the house. He's still faster going backwards but is getting the hang of forward movement too. The girls are enjoying this for the most part... we've only had a couple instances where doors were being closed in his face but I think that's been resolved! We keep telling them it's only a taste of what's to come!!
When not on his pony he's a crazy scootcher or, as we call him, the side winder snake. He's rarely still and he's on the go non stop, dragging his feed pump behind him. So much so, that he's rubbing the hair off the sides of his head and getting bald patches!! Quite the look, especially with the hair at the nape of his neck still growing and curling into tiny locks...
He's sitting more confidently every day and we're working on his transitions from his back to a sitting position, or from sitting to standing. He's also getting stronger and more comfortable putting weight on his legs. We're working on weight bearing on his hands/arms too, either by leaning side to side and catching his balance by putting his hand down, reaching for toys or pulling himself up to sitting or standing.
Since Caelan first came home he's spent another 29 days in the hospital... would have been more had some of those expected surgeries taken place when they were supposed to but let's not go there!! All in all, that's a lot better than what we expected. We've also spent over 60 days driving into the hospital for appointments and even more than that amount of 'at home' appointments.
With all the different nurses that we've had over the past year it's pretty remarkable that the nurse we had last night was the same one that we had on Caelan's first night home! She's the only one left from that initial team and we're so happy with the fantastic team we've got now... here's hoping they're willing to put up with us for a long time!
Looking back and remembering that little boy was quite overwhelming for me. Eye opening. It's amazing how much he's changed. He's still the same strong minded happy boy, but there are so many more smiles now! I think I could easily say he's more strong minded now too-- He's got a temper like I've never seen! He definitely knows what he wants and will let anyone know who stands in his way! He's more determined than ever and I think that's a really great quality for him to have.
Caelan has been making amazing progress on his 'pony' walker and is chasing his sisters all over the house. He's still faster going backwards but is getting the hang of forward movement too. The girls are enjoying this for the most part... we've only had a couple instances where doors were being closed in his face but I think that's been resolved! We keep telling them it's only a taste of what's to come!!
When not on his pony he's a crazy scootcher or, as we call him, the side winder snake. He's rarely still and he's on the go non stop, dragging his feed pump behind him. So much so, that he's rubbing the hair off the sides of his head and getting bald patches!! Quite the look, especially with the hair at the nape of his neck still growing and curling into tiny locks...
He's sitting more confidently every day and we're working on his transitions from his back to a sitting position, or from sitting to standing. He's also getting stronger and more comfortable putting weight on his legs. We're working on weight bearing on his hands/arms too, either by leaning side to side and catching his balance by putting his hand down, reaching for toys or pulling himself up to sitting or standing.
Since Caelan first came home he's spent another 29 days in the hospital... would have been more had some of those expected surgeries taken place when they were supposed to but let's not go there!! All in all, that's a lot better than what we expected. We've also spent over 60 days driving into the hospital for appointments and even more than that amount of 'at home' appointments.
With all the different nurses that we've had over the past year it's pretty remarkable that the nurse we had last night was the same one that we had on Caelan's first night home! She's the only one left from that initial team and we're so happy with the fantastic team we've got now... here's hoping they're willing to put up with us for a long time!
Wednesday, March 24, 2010
You're not going to believe this but surgery is a no-go again!!
Caelan had a rough night last night. He was extremely restless all night and ran a low grade fever. He started with the hands down the throat and gagging again. This morning we took him off his formula for a couple hours to let his tummy settle and have since restarted him on pedialyte that he's tolerating well. Oh, and that nasty molar that had his gums all swollen has finally pushed through!!!
He's continued to be restless all day, sleeping off and on, but generally cranky and miserable. He's definitely uncomfortable and completely out of sorts. Basically he just wants to be left alone in his crib. Not sure what that means for tonight...
I've spoken with the surgeon and because this is considered a 'big' surgery we are postponing again.
At the same time chicken pox are going around the girls' school. Isn't that great timing?? The girls had a playdate last thursday with a little girl who now has chicken pox. Her spots showed up 5 days after playing here, meaning that Caelan was exposed at the very beginning of the contagious period. Ryland and Darcy were exposed at the most contagious time yesterday at school and on the bus. All this being said, our surgeon contacted the infectious disease department and Caelan can't be re-scheduled for surgery until 21 days from exposure. If he actually gets chicken pox he can be scheduled for surgery one week after the spots scab over.
The good news is the sun is shining today!
Caelan had a rough night last night. He was extremely restless all night and ran a low grade fever. He started with the hands down the throat and gagging again. This morning we took him off his formula for a couple hours to let his tummy settle and have since restarted him on pedialyte that he's tolerating well. Oh, and that nasty molar that had his gums all swollen has finally pushed through!!!
He's continued to be restless all day, sleeping off and on, but generally cranky and miserable. He's definitely uncomfortable and completely out of sorts. Basically he just wants to be left alone in his crib. Not sure what that means for tonight...
I've spoken with the surgeon and because this is considered a 'big' surgery we are postponing again.
At the same time chicken pox are going around the girls' school. Isn't that great timing?? The girls had a playdate last thursday with a little girl who now has chicken pox. Her spots showed up 5 days after playing here, meaning that Caelan was exposed at the very beginning of the contagious period. Ryland and Darcy were exposed at the most contagious time yesterday at school and on the bus. All this being said, our surgeon contacted the infectious disease department and Caelan can't be re-scheduled for surgery until 21 days from exposure. If he actually gets chicken pox he can be scheduled for surgery one week after the spots scab over.
The good news is the sun is shining today!
Wednesday, April 14, 2010
A few updates to share with everyone... first of all the STING is still scheduled for tomorrow. Actually we had quite a surprise this afternoon when CHEO called. Of course, as soon as they say it's CHEO calling I'm assuming the worst. Instead surgery has been moved up!!! Who would have thought!?! Our 12 noon surgery has been rescheduled for 9am, which means that we have to be at the hospital for 7am. Little bit trickier with the girls but Gramma's up for the early morning shift. Thank you, xo.
Our 21 day incubation period for chicken pox is over... we haven't had one spot. So much for that! We've got a new date for the fundo, again our surgeon booked extra OR time specifically for Caelan. I'm hoping this new date will bring us luck since it's Poppa's birthday; April 29th.
We had another 'normal' child moment that I thought I should share with everyone. Last Friday Caelan was busy scootching all over, following me around and managed to pull his IV pole and feeding pump down on his head. This resulted in an instant dark purple bruise across the top of his forehead along with a really good dent. I called telehealth hoping for some guidelines on what to watch for but as soon as I explained Caelan they strongly encouraged me to head to the hospital, just to be safe. I have to admit it felt a little overreacting to be heading to the hospital for a bump on the head but I was concerned about being able to feel that dent. We had quite a pleasant ER visit this time. Not too long a wait and the doctors reassured us that although there may be a slight dent it was really more the swelling that we could feel. It was recommended that if I could still feel the dent early this week then consult with my pediatrician. I know this boy is going to get his share of bumps and bruises, like all boys do, and it was kind of a nice 'normal' thing to be dealing with... well except for the fact that it was his IV pole and feeding pump that landed on him... :)
Our 21 day incubation period for chicken pox is over... we haven't had one spot. So much for that! We've got a new date for the fundo, again our surgeon booked extra OR time specifically for Caelan. I'm hoping this new date will bring us luck since it's Poppa's birthday; April 29th.
We had another 'normal' child moment that I thought I should share with everyone. Last Friday Caelan was busy scootching all over, following me around and managed to pull his IV pole and feeding pump down on his head. This resulted in an instant dark purple bruise across the top of his forehead along with a really good dent. I called telehealth hoping for some guidelines on what to watch for but as soon as I explained Caelan they strongly encouraged me to head to the hospital, just to be safe. I have to admit it felt a little overreacting to be heading to the hospital for a bump on the head but I was concerned about being able to feel that dent. We had quite a pleasant ER visit this time. Not too long a wait and the doctors reassured us that although there may be a slight dent it was really more the swelling that we could feel. It was recommended that if I could still feel the dent early this week then consult with my pediatrician. I know this boy is going to get his share of bumps and bruises, like all boys do, and it was kind of a nice 'normal' thing to be dealing with... well except for the fact that it was his IV pole and feeding pump that landed on him... :)
Friday, April 16, 2010
The STING went really well yesterday. The procedure itself is quite quick and we were able to see our boy in recovery in less than an hour from when we left him in the OR. We were admitted in our room on 4East around 11am, among all the usual familiar faces. Caelan played all afternoon like a trooper and resisted any notion of a nap! He definitely experienced some discomfort (I would guess stinging or burning) when urinating after the surgery. This was to be expected for the first 12 hours or so.
This morning the surgery department were up to check that Caelan had a good night and already had him discharged by the time we got there at 8:30. We wasted no time getting him dressed and were back in the car by 9 o'clock!!
Feels good to have him back home again. :)
This morning the surgery department were up to check that Caelan had a good night and already had him discharged by the time we got there at 8:30. We wasted no time getting him dressed and were back in the car by 9 o'clock!!
Feels good to have him back home again. :)
Wednesday, April 28, 2010
Well... tomorrow's the big day. The fundoplication is still scheduled for tomorrow at 11am and we need to be at the hospital by 9am. Caelan's feed will be stopped 6 hours ahead so it may be a long morning... However he did really well with the pre-surgery fasting before the STING.
The surgery is supposed to take 4-5 hours and Caelan will be admitted for 4-5 nights on his fave floor 4E where he can flirt with all the usual nurses! I'm being optimistic and hoping that he's up to flirting. I'm sure if he isn't right away, it won't be long!!
What else is new or exciting??
Caelan has a new love for books - not just eating them anymore. He loves to listen to stories and help turn the pages. He's often scooching over to his bookshelf to get a book and then scooching over to bring it to you to read.
Caelan has also learned to appreciate music and as soon as there's a beat he's grooving to the tunes and making his sign for music. I love this!! He even dances when I sing so you know it's not really an appreciation for good music but just an acknowledgement of the effort!!
He continues to show his mind and has discovered the power of the pointing finger. A pointing finger accompanied by a 'raspberry' to get your attention sends a strong message. This is used on a regular basis to get specific toys down from his shelf.
Alright, I will update as soon as I can with news about the fundoplication. Thanks for all the support. Keep your fingers crossed, and maybe your toes too for good measure!
The surgery is supposed to take 4-5 hours and Caelan will be admitted for 4-5 nights on his fave floor 4E where he can flirt with all the usual nurses! I'm being optimistic and hoping that he's up to flirting. I'm sure if he isn't right away, it won't be long!!
What else is new or exciting??
Caelan has a new love for books - not just eating them anymore. He loves to listen to stories and help turn the pages. He's often scooching over to his bookshelf to get a book and then scooching over to bring it to you to read.
Caelan has also learned to appreciate music and as soon as there's a beat he's grooving to the tunes and making his sign for music. I love this!! He even dances when I sing so you know it's not really an appreciation for good music but just an acknowledgement of the effort!!
He continues to show his mind and has discovered the power of the pointing finger. A pointing finger accompanied by a 'raspberry' to get your attention sends a strong message. This is used on a regular basis to get specific toys down from his shelf.
Alright, I will update as soon as I can with news about the fundoplication. Thanks for all the support. Keep your fingers crossed, and maybe your toes too for good measure!
Thursday, April 29, 2010
Well... the boy sure likes his drugs...
Alright where to start... Caelan did really well with his fasting again this morning. No real complaints which was great. We were surprised that everything was running ahead of schedule and Caelan actually got in earlier than his 11 o'clock scheduled time. We had the same anasthesiologist that we had for the STING which was nice and familiar. He's an absolutely fabulous Doctor who sang to us as we walked to the OR. In the OR I had everyone singing "The wheels on the bus" while the anasthetic did it's magic and sent Caelan off to la-la land.
Then we waited... and waited... and waited. We were lucky enough to be visited by a couple of beautiful ladies who took our minds off things for a little bit. Thank you Joanna and Pam for your thoughfulness, we really appreciated seeing your friendly faces today.
The surgery took about four hours, including the anasthesiologists time. Dr. Bass came out and spoke with us about how everything went. He was surprised with the shape of Caelan's stomach as it was quite unusual, more so than he expected. However, he still felt that everything went really well. There was lots of scar tissue in there from his previous surgery that they had to work around too. Dr. Bass completely redid the fundo and patched it as well, in hopes of making this one hold longer. He also elongated Caelan's esophagus by inserting a 3cm long tube. This is something that is often required in the extreme cases of reflux caused by a TEF repair (which is what Caelan had done initially to re-attatch his esophagus and stomach). He also opened the valve at the bottom of the stomach that will allow his stomach to empty a little quicker.
It took a while for Caelan to be transfered from recovery to the PICU. Yep, no stay on 4E for Mr. C tonight. Tonight he get's the deluxe accomodations of the new PICU. What a beautiful unit!! It's absolutely amazing.
I have to admit that it was a bit of a shock for me to see Caelan after his surgery. I think I was living a little in la-la land myself and was rudely awakened when we stepped into the PICU to see our little man. It was very reminiscent of the NICU and lots came flooding back for me. It's all those wires and everything. Very overwhelming experience and I'm glad that I hadn't given it much thought before then or I would have been even more of a basket case before the surgery. Caelan had an epidural with this surgery to help manage the pain afterwords more effectively. That in itself was a very scary thing for us. He also had an arterial line put in, which is an iv into a main artery. It provides an easier access for taking blood samples and it also gives a very accurate reading for his ... hmm can't remember what?? well something! LOL it's been a long day... He has leads on to monitor his heartrate, pulse, respirations and oxygen... could it be his blood pressure?? Anyway, in addition to the arterial line (that's in his right wrist) he also has an IV in each foot. They're using one to give him his fluids since he won't be eating through the g-tube for a few days and the other one is a back up. At first I thought this was serious overkill. But when I thought about it and realized that these IV's were all put in when Caelan was sleeping, it sounded more like a good idea. However it makes for a lot of spaghetti in the bed with him, lots of wires!! He also has a catheter draining his bladder and the new g-tube catheter as well.
Caelan seemed pretty uncomfortable when we got to see him. It was hard to tell if his was just ticked off at being awake and hooked up to so much stuff or if he was actually in pain. It soon became clear to us that he was in pain. Now as good as an epidural can be, the only people who can administer the meds to the epidural are the anasthesiologists. For that reason one of them gets to work the night shift tonight! A chest x-ray was ordered to determine if the epidural was in the correct place to deliver the relief Caelan needed. In the mean time he was given some morphine. An hour later he was given some fentanyl. Now we’re talking!! Caelan loves his fentanyl!!! He seemed to settle a bit but would still grimace in his sleep and cry out regularly. The x-rays showed that the epidural was a little high and should be pulled out a little. After that was done he seemed better yet, and with one more dose of morphine he seemed to be in a much better place. Hopefully he's able to get the rest he needs tonight. Mommy came home to tuck the girls into bed and Daddy is spending tonight at the hospital with Caelan. So I'm hoping they have a nice quiet, comfortable, night.
The plan is that he gets moved to the 4th floor tomorrow. We haven't heard any talk of a discharge date but I think that initial speculation of 4-5 days was a little optimistic, especially if we're not using the new feeding tube for the first few days!! Maybe 4-5 days works for the 'average' child, but Caelan is far from average!!
Alright where to start... Caelan did really well with his fasting again this morning. No real complaints which was great. We were surprised that everything was running ahead of schedule and Caelan actually got in earlier than his 11 o'clock scheduled time. We had the same anasthesiologist that we had for the STING which was nice and familiar. He's an absolutely fabulous Doctor who sang to us as we walked to the OR. In the OR I had everyone singing "The wheels on the bus" while the anasthetic did it's magic and sent Caelan off to la-la land.
Then we waited... and waited... and waited. We were lucky enough to be visited by a couple of beautiful ladies who took our minds off things for a little bit. Thank you Joanna and Pam for your thoughfulness, we really appreciated seeing your friendly faces today.
The surgery took about four hours, including the anasthesiologists time. Dr. Bass came out and spoke with us about how everything went. He was surprised with the shape of Caelan's stomach as it was quite unusual, more so than he expected. However, he still felt that everything went really well. There was lots of scar tissue in there from his previous surgery that they had to work around too. Dr. Bass completely redid the fundo and patched it as well, in hopes of making this one hold longer. He also elongated Caelan's esophagus by inserting a 3cm long tube. This is something that is often required in the extreme cases of reflux caused by a TEF repair (which is what Caelan had done initially to re-attatch his esophagus and stomach). He also opened the valve at the bottom of the stomach that will allow his stomach to empty a little quicker.
It took a while for Caelan to be transfered from recovery to the PICU. Yep, no stay on 4E for Mr. C tonight. Tonight he get's the deluxe accomodations of the new PICU. What a beautiful unit!! It's absolutely amazing.
I have to admit that it was a bit of a shock for me to see Caelan after his surgery. I think I was living a little in la-la land myself and was rudely awakened when we stepped into the PICU to see our little man. It was very reminiscent of the NICU and lots came flooding back for me. It's all those wires and everything. Very overwhelming experience and I'm glad that I hadn't given it much thought before then or I would have been even more of a basket case before the surgery. Caelan had an epidural with this surgery to help manage the pain afterwords more effectively. That in itself was a very scary thing for us. He also had an arterial line put in, which is an iv into a main artery. It provides an easier access for taking blood samples and it also gives a very accurate reading for his ... hmm can't remember what?? well something! LOL it's been a long day... He has leads on to monitor his heartrate, pulse, respirations and oxygen... could it be his blood pressure?? Anyway, in addition to the arterial line (that's in his right wrist) he also has an IV in each foot. They're using one to give him his fluids since he won't be eating through the g-tube for a few days and the other one is a back up. At first I thought this was serious overkill. But when I thought about it and realized that these IV's were all put in when Caelan was sleeping, it sounded more like a good idea. However it makes for a lot of spaghetti in the bed with him, lots of wires!! He also has a catheter draining his bladder and the new g-tube catheter as well.
Caelan seemed pretty uncomfortable when we got to see him. It was hard to tell if his was just ticked off at being awake and hooked up to so much stuff or if he was actually in pain. It soon became clear to us that he was in pain. Now as good as an epidural can be, the only people who can administer the meds to the epidural are the anasthesiologists. For that reason one of them gets to work the night shift tonight! A chest x-ray was ordered to determine if the epidural was in the correct place to deliver the relief Caelan needed. In the mean time he was given some morphine. An hour later he was given some fentanyl. Now we’re talking!! Caelan loves his fentanyl!!! He seemed to settle a bit but would still grimace in his sleep and cry out regularly. The x-rays showed that the epidural was a little high and should be pulled out a little. After that was done he seemed better yet, and with one more dose of morphine he seemed to be in a much better place. Hopefully he's able to get the rest he needs tonight. Mommy came home to tuck the girls into bed and Daddy is spending tonight at the hospital with Caelan. So I'm hoping they have a nice quiet, comfortable, night.
The plan is that he gets moved to the 4th floor tomorrow. We haven't heard any talk of a discharge date but I think that initial speculation of 4-5 days was a little optimistic, especially if we're not using the new feeding tube for the first few days!! Maybe 4-5 days works for the 'average' child, but Caelan is far from average!!
Friday, April 30, 2010
This will be a very quick update as I'm on the night shift at CHEO and should probably be trying to sleep while Caelan is!!
Last night was a really rough night with very little sleep. We are still in the Pediatric intensive care unit as a result. They had no success in managing Caelan's pain and he was very uncomfortable all night. In addition to the epidural he also ended up receiving a steady infusion of morphine, regular doses of tylenol and additional shots of morphine over the course of the night. His epidural cocktail was changed in the early morning from being a fentanyl base to more of a morphine mix and it seems to have helped. In addition his infusion of morphine was also increased. It's crazy to me how much this boy needs... but I think his body must remember how much he likes this stuff and just breaks it down faster making him want or need more than 'normal'. Argh, I'm really not a fan of that word and could go on a little rant about it, but really this is 'normal' for Caelan... Every surgery he's had he has always required more pain medication than what the doctors think post-op.
Anyway, we seem to finally have a nice cocktail mix and Caelan spent the afternoon snoozing comfortably in a blissfully drugged state. I'm hoping that this continues overnight. I have to say that there were a few signs of "our Caelan" popping through as he did reach out to pull my hair, grab my nose and point at a book.
Hoping for a nice quiet night in the PICU and more happy moments tomorrow. xox
Last night was a really rough night with very little sleep. We are still in the Pediatric intensive care unit as a result. They had no success in managing Caelan's pain and he was very uncomfortable all night. In addition to the epidural he also ended up receiving a steady infusion of morphine, regular doses of tylenol and additional shots of morphine over the course of the night. His epidural cocktail was changed in the early morning from being a fentanyl base to more of a morphine mix and it seems to have helped. In addition his infusion of morphine was also increased. It's crazy to me how much this boy needs... but I think his body must remember how much he likes this stuff and just breaks it down faster making him want or need more than 'normal'. Argh, I'm really not a fan of that word and could go on a little rant about it, but really this is 'normal' for Caelan... Every surgery he's had he has always required more pain medication than what the doctors think post-op.
Anyway, we seem to finally have a nice cocktail mix and Caelan spent the afternoon snoozing comfortably in a blissfully drugged state. I'm hoping that this continues overnight. I have to say that there were a few signs of "our Caelan" popping through as he did reach out to pull my hair, grab my nose and point at a book.
Hoping for a nice quiet night in the PICU and more happy moments tomorrow. xox
Saturday, May 1, 2010
After a read over of last night's notes I think all I failed to mention is that he lost his arterial line in the early hours of Friday morning and we found out that he will have no food in his tummy until Monday - so yah, there's no going home in 4-5 days... I'm sure it will be at least a week.
As for last night... it went really well. Caelan slept great with few interruptions. He managed to sleep through all his machines beeping and routine checks through the night... wish I could say the same!! But I'm so happy that he had a good night. I know I suctioned him more than usual but he's so dry he's almost whistling and I'm terrified of his trach plugging up with all the gunk in there that he's not coughing up.
Today, Caelan had a more normal day, spending more time awake with naps as opposed to just sleeping the day away. Not that I'm sure he was particularly happy about being awake. Nothing close to a smile or the normal Caelan. Although I did get one raspberry, but when I did it back he looked at me like I was dreaming. He seemed ok with reading some books but not impressed with any toys near him... that was pushing it, just going way to far for him and he'd give you this look like "really?? have you lost your mind??? I'm not moving one muscle!" and then the eyes would close...
His only serious pain medication now is the epidural. His morphine infusion has been stopped. It was only 0.1ml/hour but I would say that he noticed it. He wasn't in pain but he definitely wasn't as snowed as he was yesterday and was more aware of what was going on around him.
I asked anasthesiology how long they'll keep the epidural in and they said that they usually try and take them out on day three because the longer it's in the more the risk of infection. She advised that on day three in the morning they cut the dose in half, then turn it off in the afternoon if all goes well and remove the epidural catheter the next day... Now for those of you that have been reading this since the beginning, we all know that Caelan doesn't really like to let go of his narcotics and you kind of need to sneak them away from him a little bit at a time. I don't think there's anyway they'll be able to cut his dose in half tomorrow morning and I will be suggesting a 25% decrease to start - which is far more agressive than he's ever tolerated before!! I will let you know how it goes.
Also on the medication front:
>Caelan is on a couple of antibiotics; Gentamycin and Flagyl. These are used primarily to cover some post op gastrointestinal bugs.
>As well he's received three doses of an anti-inflamatory, non steroid, medication that compliments the Tylenol he's still getting called Ketorolac.
>In addition today he started getting some major itchy-scratchies which is a side effect of the morphine, so they gave him some Nubien which is an anti itch med.
>He still getting an anti-reflux medication. This time Ranitidine since it can be given through the IV and we're not allowed anything by g-tube. As soon as he starts taking food by the g-tube he'll switch back to prevacid.
Caelan also got off his oxygen today, finally! His sats are in the 90's but not 99-100. It's good to have him off of it because the more he gets, the more he gets used to it and needs it.
Caelan lost one of his IV's today, which actually didn't go over very well at all as he decided to go a not-so-nice shade of blue-grey and drop his oxygen saturation levels from 99 to 24!! Not good at all. Those breath holding antics have returned. He did it again as he was moved from his bed to a crib, only down to 37 this time but still enough to pass out. Needless to say that both of these episodes warranted a little extra oxygen time. They are in no way related to him getting off the oxygen and have everything to do with him getting mad. No one can say he doesn't know how to prove a point!
Caelan was being moved to a crib for his trip upstairs to the FIFTH floor!!! Caelan is out of the PICU, yeah!! We would have preferred that he get admitted on 4E where we know the nurses and they know him but apparently they aren't trained on epidurals. I find this hard to understand since the nurses aren't allowed to do any changes to the epidurals, they only check to make sure it's still stuck in the same place!?! Only anasthesiology (pain med services) are allowed to make changes so they check in regularly to see how he's managing. My biggest concern about going to the 5th floor is that whenever we mentioned that's where we were going other staff said "oh, they'll take him with his trach? they ususally don't, they aren't comfortable with trachs" GREAT!!! Just what we needed to hear!!! And our concerns were a reality with our first nurse, although very nice, it was obvious that she wasn't very knowledgeable or had much experience with trachs. Doesn't leave a parent with much confidence. So Damian's on the night shift again tonight and we try and figure out how we are going to manage the week ahead.
We were surprised by another special visit not long after getting up to the 5th floor. Caelan's NICU mate, Logan, dragged his parents over to see us after an already exhausting day of parties to deliver a yummy dinner for us and some beautiful sunshine for Caelan. Thank you so much Heather, Graham and Logan for understanding. xo
I have to mention that we did meet another wonderful family next door to us in the PICU who's son was just trached earlier this week after several different surgeries to try and clear up his trachea/esophagus area that's apparently a mess. It was nice to pass on a little insight to someone else since we know how much it meant to us so long ago. They were a great couple and we've exchanged contact information in hopes of staying in touch.
As for last night... it went really well. Caelan slept great with few interruptions. He managed to sleep through all his machines beeping and routine checks through the night... wish I could say the same!! But I'm so happy that he had a good night. I know I suctioned him more than usual but he's so dry he's almost whistling and I'm terrified of his trach plugging up with all the gunk in there that he's not coughing up.
Today, Caelan had a more normal day, spending more time awake with naps as opposed to just sleeping the day away. Not that I'm sure he was particularly happy about being awake. Nothing close to a smile or the normal Caelan. Although I did get one raspberry, but when I did it back he looked at me like I was dreaming. He seemed ok with reading some books but not impressed with any toys near him... that was pushing it, just going way to far for him and he'd give you this look like "really?? have you lost your mind??? I'm not moving one muscle!" and then the eyes would close...
His only serious pain medication now is the epidural. His morphine infusion has been stopped. It was only 0.1ml/hour but I would say that he noticed it. He wasn't in pain but he definitely wasn't as snowed as he was yesterday and was more aware of what was going on around him.
I asked anasthesiology how long they'll keep the epidural in and they said that they usually try and take them out on day three because the longer it's in the more the risk of infection. She advised that on day three in the morning they cut the dose in half, then turn it off in the afternoon if all goes well and remove the epidural catheter the next day... Now for those of you that have been reading this since the beginning, we all know that Caelan doesn't really like to let go of his narcotics and you kind of need to sneak them away from him a little bit at a time. I don't think there's anyway they'll be able to cut his dose in half tomorrow morning and I will be suggesting a 25% decrease to start - which is far more agressive than he's ever tolerated before!! I will let you know how it goes.
Also on the medication front:
>Caelan is on a couple of antibiotics; Gentamycin and Flagyl. These are used primarily to cover some post op gastrointestinal bugs.
>As well he's received three doses of an anti-inflamatory, non steroid, medication that compliments the Tylenol he's still getting called Ketorolac.
>In addition today he started getting some major itchy-scratchies which is a side effect of the morphine, so they gave him some Nubien which is an anti itch med.
>He still getting an anti-reflux medication. This time Ranitidine since it can be given through the IV and we're not allowed anything by g-tube. As soon as he starts taking food by the g-tube he'll switch back to prevacid.
Caelan also got off his oxygen today, finally! His sats are in the 90's but not 99-100. It's good to have him off of it because the more he gets, the more he gets used to it and needs it.
Caelan lost one of his IV's today, which actually didn't go over very well at all as he decided to go a not-so-nice shade of blue-grey and drop his oxygen saturation levels from 99 to 24!! Not good at all. Those breath holding antics have returned. He did it again as he was moved from his bed to a crib, only down to 37 this time but still enough to pass out. Needless to say that both of these episodes warranted a little extra oxygen time. They are in no way related to him getting off the oxygen and have everything to do with him getting mad. No one can say he doesn't know how to prove a point!
Caelan was being moved to a crib for his trip upstairs to the FIFTH floor!!! Caelan is out of the PICU, yeah!! We would have preferred that he get admitted on 4E where we know the nurses and they know him but apparently they aren't trained on epidurals. I find this hard to understand since the nurses aren't allowed to do any changes to the epidurals, they only check to make sure it's still stuck in the same place!?! Only anasthesiology (pain med services) are allowed to make changes so they check in regularly to see how he's managing. My biggest concern about going to the 5th floor is that whenever we mentioned that's where we were going other staff said "oh, they'll take him with his trach? they ususally don't, they aren't comfortable with trachs" GREAT!!! Just what we needed to hear!!! And our concerns were a reality with our first nurse, although very nice, it was obvious that she wasn't very knowledgeable or had much experience with trachs. Doesn't leave a parent with much confidence. So Damian's on the night shift again tonight and we try and figure out how we are going to manage the week ahead.
We were surprised by another special visit not long after getting up to the 5th floor. Caelan's NICU mate, Logan, dragged his parents over to see us after an already exhausting day of parties to deliver a yummy dinner for us and some beautiful sunshine for Caelan. Thank you so much Heather, Graham and Logan for understanding. xo
I have to mention that we did meet another wonderful family next door to us in the PICU who's son was just trached earlier this week after several different surgeries to try and clear up his trachea/esophagus area that's apparently a mess. It was nice to pass on a little insight to someone else since we know how much it meant to us so long ago. They were a great couple and we've exchanged contact information in hopes of staying in touch.
Sunday, May 2, 2010
At 11ish last night Caelan lost his IV and they managed to get another one in his other foot... unfortunately he just lost that one and are trying to find somewhere else to get one on my poor boy. Have I mentioned how much I hate IV's??
Caelan has had a great day. The girls and I came in to visit Caelan (and Dad) and I think that was the start of a great turn for the better in Caelan. He was happy to see his big sisters and although he didn't smile, there was a sparkle in his eyes.
Tonight however, the nurse and I are getting the full flirtatious treatment, feet up in the air to kiss, hands pointing and reaching for us, raspberry conversations, smiles and laughing... I'm loving it!! All this and then the IV blows... argh!!
Anasthesiology was apparently a little mixed up this morning thinking it was day 2 instead of three and left everything as it was... until around 5pm when they realized their error and thought the epidural should be cut in half. This decision was again reversed less than 5 minutes later!! Talk about a roller coaster! Apparently there are two schools of thought when it comes to epidurals. One believes in weaning, but the other believes that when you wean you're actually reducing the area of coverage and thereby some areas are in pain and others still numb. (As opposed to just reducing the medication over the entire area.) Therefore the new plan is to turn the epidural off in the morning and treat Caelan's pain with morphine boluses (doses through the IV).
Tomorrow we also get to start feeding again. Caelan's been back on that dreaded TPN (vitamins and minerals) and fat lipids through his IV. Although because of a high triglyceride (?) level they had to stop the fat lipids today... hopefully we'll be stopping it all tomorrow and getting back to the peptamen!!
Caelan has had a great day. The girls and I came in to visit Caelan (and Dad) and I think that was the start of a great turn for the better in Caelan. He was happy to see his big sisters and although he didn't smile, there was a sparkle in his eyes.
Tonight however, the nurse and I are getting the full flirtatious treatment, feet up in the air to kiss, hands pointing and reaching for us, raspberry conversations, smiles and laughing... I'm loving it!! All this and then the IV blows... argh!!
Anasthesiology was apparently a little mixed up this morning thinking it was day 2 instead of three and left everything as it was... until around 5pm when they realized their error and thought the epidural should be cut in half. This decision was again reversed less than 5 minutes later!! Talk about a roller coaster! Apparently there are two schools of thought when it comes to epidurals. One believes in weaning, but the other believes that when you wean you're actually reducing the area of coverage and thereby some areas are in pain and others still numb. (As opposed to just reducing the medication over the entire area.) Therefore the new plan is to turn the epidural off in the morning and treat Caelan's pain with morphine boluses (doses through the IV).
Tomorrow we also get to start feeding again. Caelan's been back on that dreaded TPN (vitamins and minerals) and fat lipids through his IV. Although because of a high triglyceride (?) level they had to stop the fat lipids today... hopefully we'll be stopping it all tomorrow and getting back to the peptamen!!
Monday, May 3, 2010
Me of little faith... they got that IV in on the first try!! Guess there's a first for everything... and not to sound like a real skeptic but I do have to take their word for it!!
Anyway, what a busy day! Caelan's day started with a visit from the surgery resident around 7am when they removed the bandages around the surgical site. Not a pleasant way to start the day, and unfortunately it didn't get much better...
Immediately following this Caelan's epidural was turned off! The only pain medication he was now on was whatever was left floating around in his system. Mommy was very nervous about this, but surprised once again how strong her little man is! He did fabulously, even fell back asleep.
While Caelan slept another big decision was made to start getting these feeds back on track. We started with pedialyte, running at 15mL/hour for three hours. At noon, because the pedialyte was being tolerated, we switched to peptamen jr. (his milk formula) running at the same rate. The order was written that as long as the formula was being tolerated we would increase his feed rate by 5mL/hour every 6 hours, so at 6pm tonight he should have gone up to 20mL/hour, and at midnight to 25mL/hour, etc... He was being fed at a rate of 45 mL/hour before the surgery and that's the goal prior to going home. We can work on increasing it from there at home, but it's not a reason to keep him in the hospital.
When I asked Dr. Bass if this meant that Caelan would be coming home on Wednesday he reminded me of those special words "as tolerated"... Meaning we have to wait for Caelan to tell us when he's ready to come home!!
Oh and while were on the topic of feeds, it's also been decided that we will stop Caelan's anti-acid/reflux med, prevacid. The fundoplication is supposed to prevent the reflux of the acids so there shouldn't be a need for this medication anymore. Again, makes Mommy a little nervous, no matter how much sense that makes. Although getting rid of a medication is so exciting... Guess we'll just have to wait and see how Caelan does.
Now back to the pain management. Epidural turned off at 7am and Caelan didn't get any morphine until noonish!! He did still get his tylenol, but no morphine until noon -- Mommy was very impressed. I have to admit that it went much better than I had ever expected!!
Right after getting that shot of morphine (through his IV) the epidural was removed - and all the tape holding it in place - I'm not sure which part bothered him more... actually I think it was probably me holding him firmly on his side while the nurse was working on his back!! Less than an hour after getting the epidural out, next came his catheter. Again not sure which bothered him more; removing the tape or the actual catheter!? It feels great to me to be rid of those two big things, and I can't imagine how much better it must feel to Caelan!!
Caelan did have another dose of morphine later in the afternoon, this time in his g-tube. This one should last longer since it will need to be digested and absorbed, hopefully it works well.
When I left the hospital Caelan was much like he was last night, smiling, playing and happier than he's been in days. He was offering up those feet for nibbles and kisses, trying to pull Daddy's nose off and sending raspberries to nurse Jenn who stopped in for a visit.
Once again I really want to say a big THANK YOU to everyone for all their support, whether you're around to listen to me rant, preparing us dinner, bringing us lunch, stopping in for visits, getting the girls off the bus, or just sending positive vibes... THANK YOU! It means so much to us. xo
Anyway, what a busy day! Caelan's day started with a visit from the surgery resident around 7am when they removed the bandages around the surgical site. Not a pleasant way to start the day, and unfortunately it didn't get much better...
Immediately following this Caelan's epidural was turned off! The only pain medication he was now on was whatever was left floating around in his system. Mommy was very nervous about this, but surprised once again how strong her little man is! He did fabulously, even fell back asleep.
While Caelan slept another big decision was made to start getting these feeds back on track. We started with pedialyte, running at 15mL/hour for three hours. At noon, because the pedialyte was being tolerated, we switched to peptamen jr. (his milk formula) running at the same rate. The order was written that as long as the formula was being tolerated we would increase his feed rate by 5mL/hour every 6 hours, so at 6pm tonight he should have gone up to 20mL/hour, and at midnight to 25mL/hour, etc... He was being fed at a rate of 45 mL/hour before the surgery and that's the goal prior to going home. We can work on increasing it from there at home, but it's not a reason to keep him in the hospital.
When I asked Dr. Bass if this meant that Caelan would be coming home on Wednesday he reminded me of those special words "as tolerated"... Meaning we have to wait for Caelan to tell us when he's ready to come home!!
Oh and while were on the topic of feeds, it's also been decided that we will stop Caelan's anti-acid/reflux med, prevacid. The fundoplication is supposed to prevent the reflux of the acids so there shouldn't be a need for this medication anymore. Again, makes Mommy a little nervous, no matter how much sense that makes. Although getting rid of a medication is so exciting... Guess we'll just have to wait and see how Caelan does.
Now back to the pain management. Epidural turned off at 7am and Caelan didn't get any morphine until noonish!! He did still get his tylenol, but no morphine until noon -- Mommy was very impressed. I have to admit that it went much better than I had ever expected!!
Right after getting that shot of morphine (through his IV) the epidural was removed - and all the tape holding it in place - I'm not sure which part bothered him more... actually I think it was probably me holding him firmly on his side while the nurse was working on his back!! Less than an hour after getting the epidural out, next came his catheter. Again not sure which bothered him more; removing the tape or the actual catheter!? It feels great to me to be rid of those two big things, and I can't imagine how much better it must feel to Caelan!!
Caelan did have another dose of morphine later in the afternoon, this time in his g-tube. This one should last longer since it will need to be digested and absorbed, hopefully it works well.
When I left the hospital Caelan was much like he was last night, smiling, playing and happier than he's been in days. He was offering up those feet for nibbles and kisses, trying to pull Daddy's nose off and sending raspberries to nurse Jenn who stopped in for a visit.
Once again I really want to say a big THANK YOU to everyone for all their support, whether you're around to listen to me rant, preparing us dinner, bringing us lunch, stopping in for visits, getting the girls off the bus, or just sending positive vibes... THANK YOU! It means so much to us. xo
Tuesday, May 4, 2010
Late update tonight because Mr.C thinks it's party time!! Good reason for it though... We're heading for home in the morning!
Caelan's had a pretty good day, much cuddlier than usual and I'm just soaking that up! Not hard to take at all. This morning Dr. Bass changed the plan because he was tolerating his feeds so well. His feeds were increased every 2 hours by 5 ml/hour. He's spent the better part of the day running at 45 mL/hour and we can work on increasing from there at home. It's basically up to us (and for the better part, him) on how we want to work his feeding schedule as long as he gets his 1000mls./day.
As far as pain medication goes, Caelan is getting regular doses of tylenol which he'll continue to get at home as needed. He hasn't had any morphine since just before lunch time. If he manages through the night (which it looks like he will) then we're out of here in the morning.
He napped quite late this afternoon because he has a new 7 month old roomie whose apparently in quite a bit of pain post op. We understand, but Caelan's pretty worried about all the noise coming out of the little guy. I must admit I'm worried about the fact that Mom says he only sleeps for an hour and a half at a time all night long!!! Hopefully they've given him some really strong pain medication that knocks him out for longer than that!!
Anyway, as a result of this long late nap Caelan had, he started into play mode at about 9 o'clock tonight and has been going strong for the past hour and a half, being a real turkey. Not really the schedule I want to get on before going home.
Hoping that tomorrow night he's so thrilled to be sleeping in his own bed that it's a long peaceful night... I know I'll be looking forward to it!
Caelan's had a pretty good day, much cuddlier than usual and I'm just soaking that up! Not hard to take at all. This morning Dr. Bass changed the plan because he was tolerating his feeds so well. His feeds were increased every 2 hours by 5 ml/hour. He's spent the better part of the day running at 45 mL/hour and we can work on increasing from there at home. It's basically up to us (and for the better part, him) on how we want to work his feeding schedule as long as he gets his 1000mls./day.
As far as pain medication goes, Caelan is getting regular doses of tylenol which he'll continue to get at home as needed. He hasn't had any morphine since just before lunch time. If he manages through the night (which it looks like he will) then we're out of here in the morning.
He napped quite late this afternoon because he has a new 7 month old roomie whose apparently in quite a bit of pain post op. We understand, but Caelan's pretty worried about all the noise coming out of the little guy. I must admit I'm worried about the fact that Mom says he only sleeps for an hour and a half at a time all night long!!! Hopefully they've given him some really strong pain medication that knocks him out for longer than that!!
Anyway, as a result of this long late nap Caelan had, he started into play mode at about 9 o'clock tonight and has been going strong for the past hour and a half, being a real turkey. Not really the schedule I want to get on before going home.
Hoping that tomorrow night he's so thrilled to be sleeping in his own bed that it's a long peaceful night... I know I'll be looking forward to it!
Wednesday, May 5, 2010
We're home!!!
As promised Dr. Bass was in bright and early this morning to see how Caelan's night went. Caelan didn't really settle well all night, but I don't think he was in pain. Just uncomfortable, anxious to be rid of all the monitors and fed up with being checked for blood pressure and temperature. I think he'd had enough! I know Mommy had and I was thrilled to hear that we were being discharged at 6:30 in the morning!!!
Then we just had to wait for Dad to come and get us and we packed up all our stuff - it's amazing how much you accumulate while there for 6 days! We were out of there before 10am.
Caelan seemed to recognize the house and was waving his arms in the air, all smiles, when we got home. Once inside we began the game of 'point and raspberry' to check out each toy on the shelf to make sure they all still worked since he'd last played with them. It was pretty cute. :)
He still looks pretty rough... very tired and pale, but so happy to be home. I can't wait for his sisters to get home from school. They'll be excited to have him home and he'll be excited to see them too. Should be a fun family night tonight! HOORAY!
As promised Dr. Bass was in bright and early this morning to see how Caelan's night went. Caelan didn't really settle well all night, but I don't think he was in pain. Just uncomfortable, anxious to be rid of all the monitors and fed up with being checked for blood pressure and temperature. I think he'd had enough! I know Mommy had and I was thrilled to hear that we were being discharged at 6:30 in the morning!!!
Then we just had to wait for Dad to come and get us and we packed up all our stuff - it's amazing how much you accumulate while there for 6 days! We were out of there before 10am.
Caelan seemed to recognize the house and was waving his arms in the air, all smiles, when we got home. Once inside we began the game of 'point and raspberry' to check out each toy on the shelf to make sure they all still worked since he'd last played with them. It was pretty cute. :)
He still looks pretty rough... very tired and pale, but so happy to be home. I can't wait for his sisters to get home from school. They'll be excited to have him home and he'll be excited to see them too. Should be a fun family night tonight! HOORAY!
Monday, May 10, 2010
Well, I guess life at home just seemed too normal for Caelan so he thought he'd liven it up a bit... thanks, just what I wanted for Mother's Day!
On Friday night I noticed that Caelan's incision was oozing a little bit. I attributed it to his increased activity level and mentioned it to our night nurse who wasn't alarmed. We checked the incision for any redness and there wasn't any. In the morning Caelan was covered in hives, itching himself silly, and the incision was definitely oozing more. Hi ho, hi ho, it's off to CHEO we go...
When I see hives I automatically think allergic reaction so my mind raced through everything he's been in contact with and everything he's ingested trying to think of anything new. The only thing I could think of was that we switched from a red flavoured acetamitophen to a purple flavour. I couldn't even say for sure whether he'd ever had purple before, I just knew that we had started a new bottle and new flavour on Friday.
In the emergency room they checked out the oozing from his incision and again weren't too concerned since there was no redness around the area. They suggested we meet with the surgeon in clinic this week just to be safe. They wondered if he was starting an infection and advised to keep the area clean using warm water and just to keep an eye on it. Easy enough. As for the hives, give him benadryl. Probably a reaction to the new flavoured acetamitophen. They gave him a dose and within an hour the difference was noticeable. On our way home from CHEO we pick up yet another flavour of acetamitophen and some benadryl.
At home after Caelan's next dose of his new acetamitophen the hives came back. Another trip to get dye free tylenol and another dose of benadryl and we're hoping for the best. Overnight Caelan only received some tylenol and no benadryl. This was a huge mistake because he woke up COVERED in hives and we felt like we were playing catch up. We didn't give any more tylenol as Caelan was unbelievably more himself, happy and playing, smiling despite all the itchy scratchies. We were now giving him the recommended dose of benadryl as per the bottle every four hours. The hives were by no means disappearing but we could see some improvement, not as much as we thought we should though. Our concern was that we were going to hit the "do not exceed" dosage before bedtime and then what were we going to do. Hi ho, hi ho it's back to CHEO we go...
To our disbelief the recommended doses on the bottle are what the ER doctor referred to as 'underdosed'. Basically the daily maximum is what Caelan could get for one dose, up to six times a day!!! WHAT?!@!? This seemed absolutely insane to us. They gave Caelan a dose in the ER (equal to what we'd given him all day) and within an hour the hives/rash had improved. He got another whopper dose before I went to bed and this morning he's almost back to normal only a few tiny ones on his hands!
Hopefully that's the end of that! We're off to see the pediatrician today and I can't wait to see what he has to say about all this drama!! I'm hoping he has some good ideas as to what caused the hives...
On Friday night I noticed that Caelan's incision was oozing a little bit. I attributed it to his increased activity level and mentioned it to our night nurse who wasn't alarmed. We checked the incision for any redness and there wasn't any. In the morning Caelan was covered in hives, itching himself silly, and the incision was definitely oozing more. Hi ho, hi ho, it's off to CHEO we go...
When I see hives I automatically think allergic reaction so my mind raced through everything he's been in contact with and everything he's ingested trying to think of anything new. The only thing I could think of was that we switched from a red flavoured acetamitophen to a purple flavour. I couldn't even say for sure whether he'd ever had purple before, I just knew that we had started a new bottle and new flavour on Friday.
In the emergency room they checked out the oozing from his incision and again weren't too concerned since there was no redness around the area. They suggested we meet with the surgeon in clinic this week just to be safe. They wondered if he was starting an infection and advised to keep the area clean using warm water and just to keep an eye on it. Easy enough. As for the hives, give him benadryl. Probably a reaction to the new flavoured acetamitophen. They gave him a dose and within an hour the difference was noticeable. On our way home from CHEO we pick up yet another flavour of acetamitophen and some benadryl.
At home after Caelan's next dose of his new acetamitophen the hives came back. Another trip to get dye free tylenol and another dose of benadryl and we're hoping for the best. Overnight Caelan only received some tylenol and no benadryl. This was a huge mistake because he woke up COVERED in hives and we felt like we were playing catch up. We didn't give any more tylenol as Caelan was unbelievably more himself, happy and playing, smiling despite all the itchy scratchies. We were now giving him the recommended dose of benadryl as per the bottle every four hours. The hives were by no means disappearing but we could see some improvement, not as much as we thought we should though. Our concern was that we were going to hit the "do not exceed" dosage before bedtime and then what were we going to do. Hi ho, hi ho it's back to CHEO we go...
To our disbelief the recommended doses on the bottle are what the ER doctor referred to as 'underdosed'. Basically the daily maximum is what Caelan could get for one dose, up to six times a day!!! WHAT?!@!? This seemed absolutely insane to us. They gave Caelan a dose in the ER (equal to what we'd given him all day) and within an hour the hives/rash had improved. He got another whopper dose before I went to bed and this morning he's almost back to normal only a few tiny ones on his hands!
Hopefully that's the end of that! We're off to see the pediatrician today and I can't wait to see what he has to say about all this drama!! I'm hoping he has some good ideas as to what caused the hives...
Thursday, May 13, 2010
We went to see the pediatrician on Monday and were happy to hear that we really shouldn't worry too much about the hives. Most likely they were caused by a virus since Caelan also had a very low grade fever and more frequent bowel movements. I was having a hard time believing that it could be a reaction to the acetamitophen since he'd been on it since the surgery in hopsital and at home. He also confirmed the correct (massively increased) dosage for the benadryl. The hives are still gone and Caelan's back to himself.
The oozing at the incision site unfortunately increased and became quite bloody. I was happy to go and see the surgeon yesterday, who exclaimed "oh, that's not as bad as I thought it was going to be!" Glad he thought so because I was having a hard time with my sons oozing... He proceeded to inform us that he would just cauterize it if Gramma would hold his arms and Mom hold his legs... I'm thinking this isn't a great plan and maybe I should be getting the ambu bag out to revive Caelan after he turns blue!! But he did GREAT! Once again I think he might have been more upset about us holding him than what the surgeon was doing. Well, maybe not, I know he didn't like when the surgeon was squeezing his tummy around the incision! Now for those of you that thought like me that cauterization was done with some big hot iron tool-like-thing... think again, it actually looked like a long matchstick. It apparently has silver nitrate on the end of it and only reacts with liquid and is therefore effective in stopping blood loss. I was very proud of Gramma and I, neither of us known for our strong stomachs, did very well. It's amazing how you draw strength when someone you love needs you. Although I will admit that I didn't watch too closely...
Oh and Caelan has a new sound, kisses!! I LOVE IT!
The oozing at the incision site unfortunately increased and became quite bloody. I was happy to go and see the surgeon yesterday, who exclaimed "oh, that's not as bad as I thought it was going to be!" Glad he thought so because I was having a hard time with my sons oozing... He proceeded to inform us that he would just cauterize it if Gramma would hold his arms and Mom hold his legs... I'm thinking this isn't a great plan and maybe I should be getting the ambu bag out to revive Caelan after he turns blue!! But he did GREAT! Once again I think he might have been more upset about us holding him than what the surgeon was doing. Well, maybe not, I know he didn't like when the surgeon was squeezing his tummy around the incision! Now for those of you that thought like me that cauterization was done with some big hot iron tool-like-thing... think again, it actually looked like a long matchstick. It apparently has silver nitrate on the end of it and only reacts with liquid and is therefore effective in stopping blood loss. I was very proud of Gramma and I, neither of us known for our strong stomachs, did very well. It's amazing how you draw strength when someone you love needs you. Although I will admit that I didn't watch too closely...
Oh and Caelan has a new sound, kisses!! I LOVE IT!
Thursday, May 20, 2010
Monday I was tested to new levels and I'm not sure I succeeded... Caelan and I took our sign language teacher on a walk around the neighbourhood! Serioulsy, I thought I had the walking and talking thing down ok, but ask me to sign and walk and push a stoller... well, there were lots of stops so I could concentrate on what was being signed. One thing at a time, I guess. :)
We also had a session with the Blind Low Vision Specialist on Monday. It went really well and she was very happy with how well he was able to put things into a container that had a hole cut in the lid. It's a tricky one since it's difficult to see the hole since the lid on the container is a clear plastic. He also had a blast with a new toy that lights up, vibrates and plays music. This boy loves his music!
Tuesday we had a follow up with nephrology. The prerequisite blood work ahead of the appointment went well and so far everything looks clear. We will continue to have follow ups every 3 months to ensure that Caelan's solitary kidney is functioning at an acceptable level. I find these appointments long since primarily it the blood work and urine sample they need. Other than that the nephrologist could really review Caelan's chart on his own and then call us if there are any concern with the results from the blood and urine. It can be frustrating, especially when you get to review things with the resident or intern and then again with the offical doctor!
Yesterday we finally made our return to OCTC post op. Caelan had a great time playing with Julie and is doing great sitting strong. He's even tolerating spending a few seconds on his knees which is a big step for him. We're working on him getting more comfortable playing and reaching across his midline, side sitting and of course completing tasks. That last one is going to be the biggest challenge. When Caelan is done with something it goes flying and trying to get him to change his mind and complete the task is very difficult. He's a very independant and strong willed boy!
We had an appointment with surgery at CHEO an hour after OCTC but found out when we got there that the surgeon had been called to the OR for an emergency surgery. They had called home to cancel and reschedule the appointment but because we were at OCTC we didn't get the message. Caelan's incision has split even more and I was nervous about waiting until Tuesday to see Dr. Bass. The nurse took a look and called a resident to have a look, who suggested that we wait to see the doctor. They expected him to be at least another hour and a half. Now, lots of people would say we were very patient to wait... But you have to remember Caelan was once a newborn in that hospital and we saw lots of babies who needed emergency surgery, I am grateful that these surgeons are here. Besides it was a beautiful day, we had the stroller, Caelan needed a nap, and now we had time for a nice walk in the sunshine.
When we returned to the surgery clinic the doctor was only minutes behind us, looking exhausted after hours in the OR and apologizing for the wait! Really?!? I made sure to thank him for everything he does. That was before he made Caelan cry - don't know how these docs do what they do while these babies scream their heads off!?!? Guess you have to separate yourself from the bawling baby! Caelan's incision is infected and he advised us to keep it clean and wash it with peroxide. He did cauterize it again and wants to see us again in two weeks to keep an eye on it. He also felt that it might be easier if the mic-key were in instead of the foley and all its dressings. So three weeks after surgery we've got the mic-key back in, hooray!! Never thought I'd miss the thing so much, lol! Anyway, Caelan recovered from all this trauma quickly enough and we headed home.
Unfortunately the little guy has been quite unsettled and restless since then. Not sure what's up but hope he's back to himself soon. Thankfully we have a day with nothing scheduled today and are trying our best to enjoy it! :)
We also had a session with the Blind Low Vision Specialist on Monday. It went really well and she was very happy with how well he was able to put things into a container that had a hole cut in the lid. It's a tricky one since it's difficult to see the hole since the lid on the container is a clear plastic. He also had a blast with a new toy that lights up, vibrates and plays music. This boy loves his music!
Tuesday we had a follow up with nephrology. The prerequisite blood work ahead of the appointment went well and so far everything looks clear. We will continue to have follow ups every 3 months to ensure that Caelan's solitary kidney is functioning at an acceptable level. I find these appointments long since primarily it the blood work and urine sample they need. Other than that the nephrologist could really review Caelan's chart on his own and then call us if there are any concern with the results from the blood and urine. It can be frustrating, especially when you get to review things with the resident or intern and then again with the offical doctor!
Yesterday we finally made our return to OCTC post op. Caelan had a great time playing with Julie and is doing great sitting strong. He's even tolerating spending a few seconds on his knees which is a big step for him. We're working on him getting more comfortable playing and reaching across his midline, side sitting and of course completing tasks. That last one is going to be the biggest challenge. When Caelan is done with something it goes flying and trying to get him to change his mind and complete the task is very difficult. He's a very independant and strong willed boy!
We had an appointment with surgery at CHEO an hour after OCTC but found out when we got there that the surgeon had been called to the OR for an emergency surgery. They had called home to cancel and reschedule the appointment but because we were at OCTC we didn't get the message. Caelan's incision has split even more and I was nervous about waiting until Tuesday to see Dr. Bass. The nurse took a look and called a resident to have a look, who suggested that we wait to see the doctor. They expected him to be at least another hour and a half. Now, lots of people would say we were very patient to wait... But you have to remember Caelan was once a newborn in that hospital and we saw lots of babies who needed emergency surgery, I am grateful that these surgeons are here. Besides it was a beautiful day, we had the stroller, Caelan needed a nap, and now we had time for a nice walk in the sunshine.
When we returned to the surgery clinic the doctor was only minutes behind us, looking exhausted after hours in the OR and apologizing for the wait! Really?!? I made sure to thank him for everything he does. That was before he made Caelan cry - don't know how these docs do what they do while these babies scream their heads off!?!? Guess you have to separate yourself from the bawling baby! Caelan's incision is infected and he advised us to keep it clean and wash it with peroxide. He did cauterize it again and wants to see us again in two weeks to keep an eye on it. He also felt that it might be easier if the mic-key were in instead of the foley and all its dressings. So three weeks after surgery we've got the mic-key back in, hooray!! Never thought I'd miss the thing so much, lol! Anyway, Caelan recovered from all this trauma quickly enough and we headed home.
Unfortunately the little guy has been quite unsettled and restless since then. Not sure what's up but hope he's back to himself soon. Thankfully we have a day with nothing scheduled today and are trying our best to enjoy it! :)
Monday, May 31, 2010
On the long weekend the CHEO TRIO reunited here for a bbq. It was great to have the boys together again and always fun to have a chance to visit with their families. It was wonderful to see Campbell's smiles and hear his giggles, to watch Logan bum scootch all over the house exploring the new surroundings and Caelan just taking it all in. These three boys are really something and when I see them together it just makes my heart swell. Joanna, Heather and I will be together again this coming weekend as we are volunteering to answer phones at the CHEO telethon that takes place June 5 & 6. Then next weekend, on June 13, we will get to walk together in the Walk for Miracles to raise money for CHEO again! I think about how much CHEO has done for all of our families and I ask for your support to give back and say thanks!!
On May 21st Caelan had an ultrasound on his kidney and a VCUG (cystogram). During this test, radioactive liquid is inserted into the bladder and then watched to see if it travels up to the kidney or just down and out when he urinates. We followed up with an appointment in urology on Tuesday. Not the fantastic news we were hoping for, but not bad. The urinary reflux has not been eliminated, however it has improved. This leaves us with options once again. We can repeat the STING procedure in hopes of eliminating the reflux completely or we can wait to see if the reflux will correct itself. Because Caelan has been UTI free since last July, we opted to wait it out a bit longer. The risk with urinary reflux is that with the UTIs the infection has a much greater chance of being carried up to the kidney and with a solitary kidney that's a scary thing.
At OCTC last week we came home with a new contraption to add to Caelan's daily routine. It's called a Prone Board Stander. It's kind of a table top that is designed to support a child standing up at it to play. There's a semi-circle cut out of the table, heavy duty straps to hold him upright and foot holds for his feet. Caelan seems to enjoy this different perspective on the world, and once again we are grateful for the opportunity to have these things available to us! This in addition to his pony are to help him on his quest to walking. The pony helps work the muscles, the stander is supposed to get those bones growing strong, to help them realize they're supposed to support this little body!
This past weekend we attended Mayfest 2010, a festival for the deaf community. I must admit it was very overwhelming to walk into a hall full of people signing, and signing REALLY fast!! We found our ASL instructor and took a tour through all the booths gathering up information on programs available for deaf and hard-of-hearing children, interpreting services, communicative devices, and lots more. Little Ray's Reptiles was there so we also got to visit with snakes, spiders and a bunch of other creatures which was... fun.
On May 21st Caelan had an ultrasound on his kidney and a VCUG (cystogram). During this test, radioactive liquid is inserted into the bladder and then watched to see if it travels up to the kidney or just down and out when he urinates. We followed up with an appointment in urology on Tuesday. Not the fantastic news we were hoping for, but not bad. The urinary reflux has not been eliminated, however it has improved. This leaves us with options once again. We can repeat the STING procedure in hopes of eliminating the reflux completely or we can wait to see if the reflux will correct itself. Because Caelan has been UTI free since last July, we opted to wait it out a bit longer. The risk with urinary reflux is that with the UTIs the infection has a much greater chance of being carried up to the kidney and with a solitary kidney that's a scary thing.
At OCTC last week we came home with a new contraption to add to Caelan's daily routine. It's called a Prone Board Stander. It's kind of a table top that is designed to support a child standing up at it to play. There's a semi-circle cut out of the table, heavy duty straps to hold him upright and foot holds for his feet. Caelan seems to enjoy this different perspective on the world, and once again we are grateful for the opportunity to have these things available to us! This in addition to his pony are to help him on his quest to walking. The pony helps work the muscles, the stander is supposed to get those bones growing strong, to help them realize they're supposed to support this little body!
This past weekend we attended Mayfest 2010, a festival for the deaf community. I must admit it was very overwhelming to walk into a hall full of people signing, and signing REALLY fast!! We found our ASL instructor and took a tour through all the booths gathering up information on programs available for deaf and hard-of-hearing children, interpreting services, communicative devices, and lots more. Little Ray's Reptiles was there so we also got to visit with snakes, spiders and a bunch of other creatures which was... fun.
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