Wednesday, March 25, 2009
Wow, what a busy week we've had!!
Last week we just tried to get into the routine of having Caelan home. As much as we did all his care when we were at the hospital it's still much different at home; most noticeable is probably that the formula doesn't magically appear in the fridge and we don't have an endless supply of sterile water or clean bottles!
But life is good, in fact, it's great. Waking up knowing that there's no drive into the hospital is wonderful. Getting the girls ready and off to school has been going smoothly in the morning (not sure how long that will last) although I have to admit that Tuesday was my first day home with Darcy and Caelan and it was exhausting!! She's so happy to have her baby brother home, but what I would have done for 5 minutes of peace! And of course, this week she's home for three days :) I keep thinking if I was better organized it would be easier, just not sure when I'm supposed to find the time to get there!
Our nursing is getting settled. We're so lucky to have this help for 7 nights a week and I'm so grateful. So when our nurse on Saturday night felt a little less confident in Caelan's care I didn't mind staying up with her. Unfortunately for reasons unforseen we had no nursing on Sunday night, which meant that for two days in a row I was up from 1 o'clock in the morning, while Damian covered the hours before. This left both of us running on empty. Luckily we had a great nurse on Monday night. So great, we both slept through our alarms and she had to wake us up in the morning!!
Monday we met a couple new people on Caelan's team; our case manager in the community and Caelan's pediatrician - Dr. Michael Richler. Nothing new except a terrible diaper rash which resulted in yet another prescription. I remember the girls getting some bad diaper rash but this one is worse than anything I remember. We've been letting Caelan have some nice, fresh naked bum time trying to help dry it out. We also now have a scale at home to weigh Caelan... 10lbs. 14 oz!!!
As I mention our growing boy, we've also added that 2am feed back in the middle of the night. When I was up with him last weekend I couldn't believe how much he smacked and sucked through the night. I made note of it and realized that during the day he seems to do this for about half an hour before his feed is scheduled to begin. I've come to the conclusion he must be hungry! So instead of dividing his feeds over 5, we're dividing over 6 - every four hours he's getting 130 ml at a rate of 70ml/hour.
Today we spent a long day at CHEO. We started our day with an appointment in audiology that confirmed normal hearing in the right ear with moderate to severe hearing loss in the left ear. We bumped into another NICU grad down there in audiology and it was great to see the familiar faces (xoxo). Can't wait for the opportunity for a real visit!
Next we were off to urology. Nothing really new here; still severe urinary reflux - grade 4, I think. Anyway because it often goes away in little boys we're kind of in a wait and see mode. Follow up will be in the fall.
Occupational Therapy was next. This consisted of several exercises to get Caelan's development back on track after being intubated and on his back for so long. We help him practice rolling from side to side and then really make him mad by putting him on his tummy or sitting him up!
Last was surgery clinic. Caelan had his feeding tube replaced and has been prescribed a mickey. Whenever the mickey arrives we'll be making the appointment to have it put in. Shouldn't be long though and it will be nice to not have the long feeding tube all the time!
Anyway, the night nurses are here and I should be in bed, like my son, sleeping away... Sweet dreams.
Wednesday, April 1, 2009
I can't believe that another week has passed with Caelan home... the black hole of maternity leave has officially begun! Where do the days go!?!?
Our biggest news is that Caelan got his mic-key put in yesterday. The mic-key is a low profile gastrostomy feeding tube. It reminds me of the plug on a beach ball! When it's time for a feeding there's an extension set that's added to the mic-key. It locks into place and you attach the feeding pump tube to it just like his previous feeding tube. The benefit is that when feeding time is over you remove the extension set and close the mic-key button and there's no hanging bits! It's taking some getting used to but it's such an improvement.
Tomorrow we have appointments at CHEO in the afternoon. One with Occupational Therapy (hopefully Caelan will show off some rolling!) and then with Nephrology (kidney specialist) We're hoping to drop in at the NICU to see some friendly faces and maybe deliver some hugs to friends who are back for a cardiac procedure.
Monday, April 6, 2009
In my last entry I forgot to mention that we did our first at home trach change on March 29th. Gramma and Grampa watched on as Auntie Vicky took out the old trach and Daddy put in the new one. Everything went smoothly with no concerns - a success! Caelan has an ENT appointment on April 29th where I believe the next trach change will take place.
Everything with the mic-key is going well. Although both Damian and I feel that Caelan's been more gassy lately. Not sure if it's just a coincidence or not!!?!?
We had another appointment with Occupational Therapy that went great. Caelan is doing really well with rolling although we've got some work to do with the neck strength, but progress is being made for sure! So proud of our little boy. We were also able to get our pinky finger into his mouth and move it along his gums without any strong objections. Only if you go over his tongue does he gag, so we're staying away from that and just getting him used to having something in his mouth.
We also had an appointment with nephrology. No real changes there - still one kidney :) We've got blood work to go do and they took a urine sample.
Our week finished off with a visit from the nutritionist/dietician. We weighed Caelan and he's 5.14 kilos which means he gets to eat a little bit more. It seems to have helped with the smacking and tongue sucking that was going on before every feed.
This weekend marked another first for our family. All five of us went on our first outing together and it couldn't have been for a better reason. We went to the Whyte Easter Dinner and introduced Caelan to Damian's mom's side of the family. He got to be in the same room as all his cousins and even had a little snuggle with Aunt Debbie (guess that would be Caelan's Great Aunt Debbie!) Caelan did really well and even though it was really noisy with so many people Caelan fell asleep! It felt a whole lot like normal and that was great!!
Sunday, April 19, 2009
I seem to be at a loss for words lately as we're just living our new normal. It feels really good... except for when our nurse is sick and we're up all night!! Thank goodness that doesn't happen very often, just so happens that it did last night. When you think about it, it's better they don't come sick and besides it gave both Damian and I time to watch some movies we got for Christmas!
Caelan is doing great! He is such a good natured little boy. He tolerates all the loud noises that Poppa makes around the house with drills, saws and hammers. He even sleeps through the girls being crazy, playing or yelling. He's so happy and content and if he isn't there's a reason for it. He either needs a clean diaper (yep, still likes a clean bum - but really, who wouldn't!?!?!), wants back in bed, or needs venting or suctioning. He's sleeping great through the night and on the rare occasion he does wake up he's all smiles for the nurses.
We're trying to live life as normal as possible. Over Easter weekend we visited grandparents in Orleans and Barrhaven. On Wednesday night we all went to Pizza Hut for dinner! (Ryland had 4 teeth pulled out on Thursday morning and it was her choice for her "last supper" before a diet of applesauce, pudding, jello and ice cream! Actually, she did fantastic and was out playing that afternoon. She was begging for real food the next day - and here I thought she'd be dragging this one out!)
He's got the whole roll from side to side thing down great. Not liking the tummy time at all, but we have succeeded in tricking him a bit by holding him on our chest and slouching down so he's kind of in the same position... it's a start!
Slow progress with the oral stimulation but we're still working on it. I have managed to get a soother in his mouth more that a few times and he still looks at me with this surprised look, eyebrows raised, then a frown, then the gag.
We've been out for a walk just the two of us without complications or drama. I'm hoping for more nice weather to try and keep up with that. I'm used to much more of a schedule or routine and would like to think that Caelan would cooperate with me on that one but so far no such luck... Rarely is one day like the next. Just when I think I've got him figured out he goes and changes everything. A lot depends on how well he sleeps overnight and that makes sense to me.
I think the hardest part of all this for me personally is having to rely on other people driving us since I can't drive with him on my own. It's hard not being able to go visiting with him, or go shopping without arranging a driver. With that in mind I wanted to say a HUGE THANK YOU to everyone who has been driving us around town! I really appreciate your help.
Caelan is doing great! He is such a good natured little boy. He tolerates all the loud noises that Poppa makes around the house with drills, saws and hammers. He even sleeps through the girls being crazy, playing or yelling. He's so happy and content and if he isn't there's a reason for it. He either needs a clean diaper (yep, still likes a clean bum - but really, who wouldn't!?!?!), wants back in bed, or needs venting or suctioning. He's sleeping great through the night and on the rare occasion he does wake up he's all smiles for the nurses.
We're trying to live life as normal as possible. Over Easter weekend we visited grandparents in Orleans and Barrhaven. On Wednesday night we all went to Pizza Hut for dinner! (Ryland had 4 teeth pulled out on Thursday morning and it was her choice for her "last supper" before a diet of applesauce, pudding, jello and ice cream! Actually, she did fantastic and was out playing that afternoon. She was begging for real food the next day - and here I thought she'd be dragging this one out!)
He's got the whole roll from side to side thing down great. Not liking the tummy time at all, but we have succeeded in tricking him a bit by holding him on our chest and slouching down so he's kind of in the same position... it's a start!
Slow progress with the oral stimulation but we're still working on it. I have managed to get a soother in his mouth more that a few times and he still looks at me with this surprised look, eyebrows raised, then a frown, then the gag.
We've been out for a walk just the two of us without complications or drama. I'm hoping for more nice weather to try and keep up with that. I'm used to much more of a schedule or routine and would like to think that Caelan would cooperate with me on that one but so far no such luck... Rarely is one day like the next. Just when I think I've got him figured out he goes and changes everything. A lot depends on how well he sleeps overnight and that makes sense to me.
I think the hardest part of all this for me personally is having to rely on other people driving us since I can't drive with him on my own. It's hard not being able to go visiting with him, or go shopping without arranging a driver. With that in mind I wanted to say a HUGE THANK YOU to everyone who has been driving us around town! I really appreciate your help.
Tuesday, April 21, 2009
Caelan had an appointment with his Pediatrician yesterday.
Wanted to let everyone know that he's almost 24" long (average length at 6 mths old is about 26") and he weighed 12 lbs (which is the average weight for his height).
The doctor said his heart and lungs sound good and his eyes and ears look good, all around no concerns. Then he went to go get the shots... Yep, 6 months old, happy birthday to you Caelan and here you go a shot in each leg! He wasn't impressed. After the first one he held his breath and began to change colour, so mean mom that I am I blew in his face so he'd catch his breath, when the Doc thought that was good timing for the second one... he held his breath a little longer that time along... nothing a little snuggle couldn't fix... but man shots suck!
Wanted to let everyone know that he's almost 24" long (average length at 6 mths old is about 26") and he weighed 12 lbs (which is the average weight for his height).
The doctor said his heart and lungs sound good and his eyes and ears look good, all around no concerns. Then he went to go get the shots... Yep, 6 months old, happy birthday to you Caelan and here you go a shot in each leg! He wasn't impressed. After the first one he held his breath and began to change colour, so mean mom that I am I blew in his face so he'd catch his breath, when the Doc thought that was good timing for the second one... he held his breath a little longer that time along... nothing a little snuggle couldn't fix... but man shots suck!
Wednesday, April 29, 2009
What a long day at CHEO!
Our day started with a 9 o'clock ENT appointment (running a good hour late - them not us!) Waiting was the longest part of the visit and probably the most fun part too! The only exception to that may be that we met with the Speech Language Pathologist and tried the speaking valve on Caelan again. With three attempts we had some success and were able to hear some cooing and crying before he coughed it off. It's a lot of work for him though. I have the speaking valve at home now and will be able to work on it with Caelan more regularly. I was also given a "talking to" regarding my slack/non-existent use of the swedish nose so we'll be working on that too!
Next I held Caelan on my lap restraining both his arms and legs while ENT scoped to see if his vocal cords were moving. I don't think this was fun for either of us and unfortunately no movement was detected. :(
We were due for a trach change and had invited a couple of our night nurses along to the appointment to watch. Didn't go quite as smoothly as I remember my last one going. Caelan has more strength and moves his head so much more making the change that much more difficult. More of a moving target and the pressure is definitely on!
After two traumatizing procedures, Caelan was exhausted and instantly asleep. (Obviously wasn't that bad since he recovered so quickly) What better time to head over to audiology to get some more hearing tests done! Audiology was able to test Caelan's left ear more extensively than ever before and although they learned more, the end result is still the same; moderate to severe hearing loss. I actually had it backwards - he can hear lower tones better than higher ones.
It's now 1 o'clock and at this point we decided it was time for some friendly faces and headed up to the NICU for a quick visit. It was great to see everyone. In fact, I was telling Damian how I find the NICU a comforting place to visit, kind of unbelievable but to see all these people that supported us through some of the most difficult days of our lives... I can't explain it. I really hope they understand just how special they are to us. xoxo
Finally we headed over to occupational therapy. We had arranged a sort of open appointment for whenever we were finished in ENT, aiming for 10 -10:30... It was now almost 2 o'clock!?!? Lucky for us Jessica was available - unlucky for us Caelan was one tired little boy! Actually he did quite well considering the day he had and we did manage to sneak a couple exercises by him.
Caelan was very excited to get home and get some good "kick and play" time in. After such an exhausting day he turned in for an early night and has been sleeping ever since!! Wish I could say the same...
Our day started with a 9 o'clock ENT appointment (running a good hour late - them not us!) Waiting was the longest part of the visit and probably the most fun part too! The only exception to that may be that we met with the Speech Language Pathologist and tried the speaking valve on Caelan again. With three attempts we had some success and were able to hear some cooing and crying before he coughed it off. It's a lot of work for him though. I have the speaking valve at home now and will be able to work on it with Caelan more regularly. I was also given a "talking to" regarding my slack/non-existent use of the swedish nose so we'll be working on that too!
Next I held Caelan on my lap restraining both his arms and legs while ENT scoped to see if his vocal cords were moving. I don't think this was fun for either of us and unfortunately no movement was detected. :(
We were due for a trach change and had invited a couple of our night nurses along to the appointment to watch. Didn't go quite as smoothly as I remember my last one going. Caelan has more strength and moves his head so much more making the change that much more difficult. More of a moving target and the pressure is definitely on!
After two traumatizing procedures, Caelan was exhausted and instantly asleep. (Obviously wasn't that bad since he recovered so quickly) What better time to head over to audiology to get some more hearing tests done! Audiology was able to test Caelan's left ear more extensively than ever before and although they learned more, the end result is still the same; moderate to severe hearing loss. I actually had it backwards - he can hear lower tones better than higher ones.
It's now 1 o'clock and at this point we decided it was time for some friendly faces and headed up to the NICU for a quick visit. It was great to see everyone. In fact, I was telling Damian how I find the NICU a comforting place to visit, kind of unbelievable but to see all these people that supported us through some of the most difficult days of our lives... I can't explain it. I really hope they understand just how special they are to us. xoxo
Finally we headed over to occupational therapy. We had arranged a sort of open appointment for whenever we were finished in ENT, aiming for 10 -10:30... It was now almost 2 o'clock!?!? Lucky for us Jessica was available - unlucky for us Caelan was one tired little boy! Actually he did quite well considering the day he had and we did manage to sneak a couple exercises by him.
Caelan was very excited to get home and get some good "kick and play" time in. After such an exhausting day he turned in for an early night and has been sleeping ever since!! Wish I could say the same...
Friday, May 22, 2009
I know it's been a long time but I really don't know what to say. Life is getting normal - I know how wierd is that?? It's a new normal, but it is what it is.
Caelan is weighing in at 13 pounds this week. His dietician is thrilled! (so are we) We're still on neocate with the increased calories (22). We've got some gas issues that we're coping with by lots of venting of his feeding tube and it seems to help.
We continue to go to Occupational Therapy every week and work on a variety of exercises. He's great at rolling from side to side, does it all the time now, and hates tummy time. In fact, tummy time is almost non existent since as soon as you put Caelan on his tummy he 'freaks', to the point that he's holding his breath and you've got no choice but to roll him back. He really has relaxed so much since we brought him home though. He's much calmer being 'handled' but still has that temper and definitely know what he wants or doesn't want. Despite his dislike for tummy time we still work on neck strength by supporting him sitting up and other positions to work on the side neck muscles. It's exhausting work for Caelan and after about an hour of exercises he's done.
The whole family will be participating in Walmart's Walk for Miracles on Sunday June 14th. We'll be participating as a team, the CHEO Trio, with two other little troopers from our days in the NICU. We are very excited about this reunion of the three musketeers so keep your fingers crossed for a sunny day! If you would like to make a donation on line, 100% of the proceeds go to the CHEO Foundation. The website is www. walmartwalkformiracles.ca
Caelan is weighing in at 13 pounds this week. His dietician is thrilled! (so are we) We're still on neocate with the increased calories (22). We've got some gas issues that we're coping with by lots of venting of his feeding tube and it seems to help.
We continue to go to Occupational Therapy every week and work on a variety of exercises. He's great at rolling from side to side, does it all the time now, and hates tummy time. In fact, tummy time is almost non existent since as soon as you put Caelan on his tummy he 'freaks', to the point that he's holding his breath and you've got no choice but to roll him back. He really has relaxed so much since we brought him home though. He's much calmer being 'handled' but still has that temper and definitely know what he wants or doesn't want. Despite his dislike for tummy time we still work on neck strength by supporting him sitting up and other positions to work on the side neck muscles. It's exhausting work for Caelan and after about an hour of exercises he's done.
The whole family will be participating in Walmart's Walk for Miracles on Sunday June 14th. We'll be participating as a team, the CHEO Trio, with two other little troopers from our days in the NICU. We are very excited about this reunion of the three musketeers so keep your fingers crossed for a sunny day! If you would like to make a donation on line, 100% of the proceeds go to the CHEO Foundation. The website is www. walmartwalkformiracles.ca
Tuesday, May 26, 2009
Well I will NEVER again write that I don't know what to say or that life has become normal!!
Caelan is back at CHEO.
He started spitting up more frequently on Sunday, but sometimes there's just an 'off' day now and then. Unfortunately it seemed to get worse and by Monday afternoon we knew there was something wrong. Caelan had been unable to settle most of the day. With no sleep worth mentionning, he had grown quite irritable and was very pale. There was no consoling him and his feed was just bubbling back while he was vented.
Damian drove into CHEO with his sister Vicky, while I stayed home with the girls. I can add to the drama by mentionning that I've got strep throat (on antibiotics since Sunday) and had put my back out earlier in the day. Knowing this, we were on watch for any symptoms of strep in Caelan. Damian had taken his temperature regularly throughout the day but there was never a fever, not even a mild one, if anything his temp was unusually low for him.
After spending many hours in the emergency room with a multitude of examinations, blood test, chest x-rays, ultrasounds, it was decided that Caelan should be admitted.
Once again I was sleeping at home without my son and it sucked. How quickly it all comes back. Damian got home around 4:30 this morning and then headed back in to see Caelan before lunchtime.
Caelan has still not developed any fever and has the staff befuddled... again. It's looking like a stomach virus but they really aren't sure. We're back to the guessing game.
They've tried giving him pedialyte a couple times but he consistently spits it back up. At this point Damian and I are convinced our little boy must be beyond exhausted. He didn't sleep well on Monday during the day and then his night was spent with all the doctors and nurses assessing him. Even once he was admitted and settled in his room it seemed that he'd wake every 20 minutes gagging or coughing, although his stomach was very empty by this time. This evening he's getting a familiar dose of chloral hydrate to try and help him get some decent sleep.
We also got a visit from our Doc from ENT. He came up to take a look at his trach since it had some redness around the stoma that we had been slightly concerned about, wondering if an infection there could be causing all this. They've taken a swab and an apparently "stoma specialist nurse" is going to check him out tomorrow.
I never thought I would miss the sound of the humidity compressor... but that sound would mean that Caelan is where he belongs... home with his family. Right now the house just feels too quiet.
Caelan is back at CHEO.
He started spitting up more frequently on Sunday, but sometimes there's just an 'off' day now and then. Unfortunately it seemed to get worse and by Monday afternoon we knew there was something wrong. Caelan had been unable to settle most of the day. With no sleep worth mentionning, he had grown quite irritable and was very pale. There was no consoling him and his feed was just bubbling back while he was vented.
Damian drove into CHEO with his sister Vicky, while I stayed home with the girls. I can add to the drama by mentionning that I've got strep throat (on antibiotics since Sunday) and had put my back out earlier in the day. Knowing this, we were on watch for any symptoms of strep in Caelan. Damian had taken his temperature regularly throughout the day but there was never a fever, not even a mild one, if anything his temp was unusually low for him.
After spending many hours in the emergency room with a multitude of examinations, blood test, chest x-rays, ultrasounds, it was decided that Caelan should be admitted.
Once again I was sleeping at home without my son and it sucked. How quickly it all comes back. Damian got home around 4:30 this morning and then headed back in to see Caelan before lunchtime.
Caelan has still not developed any fever and has the staff befuddled... again. It's looking like a stomach virus but they really aren't sure. We're back to the guessing game.
They've tried giving him pedialyte a couple times but he consistently spits it back up. At this point Damian and I are convinced our little boy must be beyond exhausted. He didn't sleep well on Monday during the day and then his night was spent with all the doctors and nurses assessing him. Even once he was admitted and settled in his room it seemed that he'd wake every 20 minutes gagging or coughing, although his stomach was very empty by this time. This evening he's getting a familiar dose of chloral hydrate to try and help him get some decent sleep.
We also got a visit from our Doc from ENT. He came up to take a look at his trach since it had some redness around the stoma that we had been slightly concerned about, wondering if an infection there could be causing all this. They've taken a swab and an apparently "stoma specialist nurse" is going to check him out tomorrow.
I never thought I would miss the sound of the humidity compressor... but that sound would mean that Caelan is where he belongs... home with his family. Right now the house just feels too quiet.
Thursday, May 28, 2009
Well good news for today... no, Caelan isn't home yet, but Damian did get smiles today - and that's a big step in the right direction.
The chloral hydrate that they gave Caelan the other night did a wonderful job of allowing him to settle down and as a result he slept a great night. In fact, he slipped back into teenage mode and slept most of yesterday too with only some brief moments of being awake and alert yesterday afternoon. He really wasn't too interested in being social though. Damian said that his sleep looked so much more restful, so much more normal. He was even in his standard sleep pose with his hands up behind his head. That alone made me feel better. Last night they introduced the neocate back into Caelan's diet. It was a 50/50 mix between the neocate and the pedialyte. He tolerated that well. A new concern was some blood from his trach. ENT did a scope down his trachea and noticed some granulation tissue just past the end of his trach. Granulation tissue is what forms around a new wound (? body's way of trying to repair or adjust to this new wound) This could have been caused by a nick when suctioning or just the normal movement of the trach itself. The Doctor prescribed some drops that are to be put down Caelan's trach 2x a day and would like to scope again in 5 days when the drops are done to make sure it's cleared up. The stoma specialist was actually an open wound specialist and she suggested a barrier treatment that should be applied and then allowed to dry for one minute before letting Caelan move about all those chins. It seems to be just a simple irritation caused by all the friction around his trach.
Today, Caelan slept most of the morning again, but this afternoon he played and rolled and smiled and was much more his normal self. YEH! We finally got results that confirmed that Caelan did/does have strep throat. Although he's already on antibiotics that should take care of it. The barrier application was administered and seems to be working wonders on all the redness around Caelan's trach. ENT came later in the afternoon to do a trach change and a procedure with some silver nitrate to remove some excess skin/granulation tissue around the stoma. They did as much as possible around his trach with it still in, then removed it and finished it off before putting the new trach in. It definitely wasn't Caelan's favourite part of the day; he despises being held in place or having his movement restricted in any way. So to have that combined with a trach change where he loses his ability to breath momentarily and add to that another procedure (which sounds completely nasty to me), you can imagine the state he was in by the end of it all. Sheer exhaustion once again, but after a quick "I've had enough of all of you" nap - that's the one with the arm over his eyes - he was back to himself.
Unfortunately still no word as to when he's coming home... we need to get his feeds back to normal first. Today he was switched to 100% neocate, but still only 30 mL/hour. Oh, and he lost his IV and Damian managed to point out the obvious that we really didn't need another one at this time. The one med that he was getting through IV was changed to an oral one. Small steps towards home though...
I was finally given the OK to go see him tomorrow and it can't come soon enough!!!
The chloral hydrate that they gave Caelan the other night did a wonderful job of allowing him to settle down and as a result he slept a great night. In fact, he slipped back into teenage mode and slept most of yesterday too with only some brief moments of being awake and alert yesterday afternoon. He really wasn't too interested in being social though. Damian said that his sleep looked so much more restful, so much more normal. He was even in his standard sleep pose with his hands up behind his head. That alone made me feel better. Last night they introduced the neocate back into Caelan's diet. It was a 50/50 mix between the neocate and the pedialyte. He tolerated that well. A new concern was some blood from his trach. ENT did a scope down his trachea and noticed some granulation tissue just past the end of his trach. Granulation tissue is what forms around a new wound (? body's way of trying to repair or adjust to this new wound) This could have been caused by a nick when suctioning or just the normal movement of the trach itself. The Doctor prescribed some drops that are to be put down Caelan's trach 2x a day and would like to scope again in 5 days when the drops are done to make sure it's cleared up. The stoma specialist was actually an open wound specialist and she suggested a barrier treatment that should be applied and then allowed to dry for one minute before letting Caelan move about all those chins. It seems to be just a simple irritation caused by all the friction around his trach.
Today, Caelan slept most of the morning again, but this afternoon he played and rolled and smiled and was much more his normal self. YEH! We finally got results that confirmed that Caelan did/does have strep throat. Although he's already on antibiotics that should take care of it. The barrier application was administered and seems to be working wonders on all the redness around Caelan's trach. ENT came later in the afternoon to do a trach change and a procedure with some silver nitrate to remove some excess skin/granulation tissue around the stoma. They did as much as possible around his trach with it still in, then removed it and finished it off before putting the new trach in. It definitely wasn't Caelan's favourite part of the day; he despises being held in place or having his movement restricted in any way. So to have that combined with a trach change where he loses his ability to breath momentarily and add to that another procedure (which sounds completely nasty to me), you can imagine the state he was in by the end of it all. Sheer exhaustion once again, but after a quick "I've had enough of all of you" nap - that's the one with the arm over his eyes - he was back to himself.
Unfortunately still no word as to when he's coming home... we need to get his feeds back to normal first. Today he was switched to 100% neocate, but still only 30 mL/hour. Oh, and he lost his IV and Damian managed to point out the obvious that we really didn't need another one at this time. The one med that he was getting through IV was changed to an oral one. Small steps towards home though...
I was finally given the OK to go see him tomorrow and it can't come soon enough!!!
Friday, May 29, 2009
More good news for today... Caelan is out of isolation and has been released into the public ward of 4East at CHEO.
To prepare for this momentous occasion Mommy gave him a quick bath and changed his trach ties so that he'd be all fresh and clean to meet his new roommate.
(You know there isn't much news when I tell you about giving him a bath because he usually gets one every day - but that really is a good thing!!)
Caelan is still a very sleepy boy and not quite 100% but definitely well on his way there. They increased his feed to a rate of 55mL/hour which is much closer to what he was on (65) and he tolerated his 2pm feed well. We need him back on his normal feeding schedule before we can bring him home.
As thrilled as I was to finally get to see Caelan after what felt like so long, the high point of my day was after a handfull of smiles he reached for me... talk about feeling the love :) We rounded out our visit with lots of playing, rolling and chewing on anything and everything. Those teeth must be getting close!!
To prepare for this momentous occasion Mommy gave him a quick bath and changed his trach ties so that he'd be all fresh and clean to meet his new roommate.
(You know there isn't much news when I tell you about giving him a bath because he usually gets one every day - but that really is a good thing!!)
Caelan is still a very sleepy boy and not quite 100% but definitely well on his way there. They increased his feed to a rate of 55mL/hour which is much closer to what he was on (65) and he tolerated his 2pm feed well. We need him back on his normal feeding schedule before we can bring him home.
As thrilled as I was to finally get to see Caelan after what felt like so long, the high point of my day was after a handfull of smiles he reached for me... talk about feeling the love :) We rounded out our visit with lots of playing, rolling and chewing on anything and everything. Those teeth must be getting close!!
Monday, June 1, 2009
Our little boy is back - in more ways than one - He's back to his normal happy self and back home where he belongs.
We are all so excited to have him home and by the smiles Caelan gave while getting into his car seat, I would say that he was happy to escape the walls of CHEO too! He even stayed happy the entire drive home which is rare.
We are all so excited to have him home and by the smiles Caelan gave while getting into his car seat, I would say that he was happy to escape the walls of CHEO too! He even stayed happy the entire drive home which is rare.
Monday, June 15, 2009
What a busy week!
Last Friday (June 5) Caelan surprised us by finally reaching one of those baby moments that I've been waiting for... he put his foot in his mouth without any prompting or assistance. It's kind of silly but I was really excited about another really 'normal' milestone. Since then he's tasted those toes daily and it seems that the left ones taste better than the right!
That weekend Caelan had his first sitter, while Mommy and Daddy went to a wedding. We got a nurse for the evening in addition to our regular overnight shift nurse and the girls were at Nana and Grampsy's. It was a wonderful evening and a big step for us.
On Tuesday we had a follow up appointment with ENT. They wanted to check the stoma where that extra tissue was taken off with the silver nitrate. It was healing well but they used a bit more silver nitrate to clean it up a little more. They also scoped down Caelan's trach to check the granulation tissue that was noted just past the bottom of the trach while he was in hospital. It was all cleared up, yeh!
On Thursday we went to Occupational Therapy with a new therapist. Actually it's the same Therapist that checked Caelan's car seat before he came home and who fed Caelan that first taste of hawaii blue neocate! It was a great session. We sat Caelan in a corner (sounds like he was bad!?!? he wasn't!) with a pillow behind him, holding his legs down and he played like a trooper for a few minutes. He did really well, especially since before that we had him sitting in another position wedged between our legs. He's still not a fan of going on his tummy but we're making progress on the neck and trunk strength all the same. The Therapist also mentionned oral feeds. It seems like Caelan is requiring less suctioning than before and swallowing more of his secretions successfully so we're optimistic. She's going to check with our ENT doctor to see if he's okay with another trial. It will either be grape juice or blueberries!!
Sunday was our big walk. What a success!!! The CHEO Trio raised $5800!! Thanks to everyone who supported this wonderful cause and helped us pay back a little of what we owe CHEO. We had great weather and it was wonderful to see those three little boys all out of the NICU and in the fresh air. It was a fun family outing for us and we look forward to participating in it next year. Our Team Captain did a fantastic job with organizing and motivating us, even spoiled us with a BBQ back at her house after the walk - THANK YOU HEATHER!
Last Friday (June 5) Caelan surprised us by finally reaching one of those baby moments that I've been waiting for... he put his foot in his mouth without any prompting or assistance. It's kind of silly but I was really excited about another really 'normal' milestone. Since then he's tasted those toes daily and it seems that the left ones taste better than the right!
That weekend Caelan had his first sitter, while Mommy and Daddy went to a wedding. We got a nurse for the evening in addition to our regular overnight shift nurse and the girls were at Nana and Grampsy's. It was a wonderful evening and a big step for us.
On Tuesday we had a follow up appointment with ENT. They wanted to check the stoma where that extra tissue was taken off with the silver nitrate. It was healing well but they used a bit more silver nitrate to clean it up a little more. They also scoped down Caelan's trach to check the granulation tissue that was noted just past the bottom of the trach while he was in hospital. It was all cleared up, yeh!
On Thursday we went to Occupational Therapy with a new therapist. Actually it's the same Therapist that checked Caelan's car seat before he came home and who fed Caelan that first taste of hawaii blue neocate! It was a great session. We sat Caelan in a corner (sounds like he was bad!?!? he wasn't!) with a pillow behind him, holding his legs down and he played like a trooper for a few minutes. He did really well, especially since before that we had him sitting in another position wedged between our legs. He's still not a fan of going on his tummy but we're making progress on the neck and trunk strength all the same. The Therapist also mentionned oral feeds. It seems like Caelan is requiring less suctioning than before and swallowing more of his secretions successfully so we're optimistic. She's going to check with our ENT doctor to see if he's okay with another trial. It will either be grape juice or blueberries!!
Sunday was our big walk. What a success!!! The CHEO Trio raised $5800!! Thanks to everyone who supported this wonderful cause and helped us pay back a little of what we owe CHEO. We had great weather and it was wonderful to see those three little boys all out of the NICU and in the fresh air. It was a fun family outing for us and we look forward to participating in it next year. Our Team Captain did a fantastic job with organizing and motivating us, even spoiled us with a BBQ back at her house after the walk - THANK YOU HEATHER!
Wednesday, June 17, 2009
We took Caelan to see his pediatrician yesterday. He's developed a bit of a yeast infection around his trach that we're now treating with a prescription cream. There was also some concern that he may be starting an ear infection and was put back on Keflex - the antibiotic he started in the hospital for his strep throat. We're also trouble shooting with some serious gas issues.
Caelan's been a little "off" and I was relieved to see that there are definitely some little teeth trying to poke through on the bottom. This helps to explain his cranky behaviour of late... Or at least I'm hoping it does! (Although as I type this he's grinning at me through the bars of his crib at 4:30 in the morning!!!)
The good news of the day was that Caelan weighed in at 13lbs. 6oz. This is absolutely fantastic because we were concerned he'd lost a pound or more while in the hospital but with no consistent scale being used it's always hard to say for sure how much he'd lost. It's also our understanding that when these little guys lose weight like that it's harder for them to just gain it back. Based on his last weight taken at the pediatrician's office he's doing fine. What a relief!
Our only other concern right now is nursing... this is our third work night in a week with no nurse! It's getting a bit ridiculous and I think tomorrow (well, later this morning!) I'll have to start looking at other options to try and help with the situation.
Caelan's been a little "off" and I was relieved to see that there are definitely some little teeth trying to poke through on the bottom. This helps to explain his cranky behaviour of late... Or at least I'm hoping it does! (Although as I type this he's grinning at me through the bars of his crib at 4:30 in the morning!!!)
The good news of the day was that Caelan weighed in at 13lbs. 6oz. This is absolutely fantastic because we were concerned he'd lost a pound or more while in the hospital but with no consistent scale being used it's always hard to say for sure how much he'd lost. It's also our understanding that when these little guys lose weight like that it's harder for them to just gain it back. Based on his last weight taken at the pediatrician's office he's doing fine. What a relief!
Our only other concern right now is nursing... this is our third work night in a week with no nurse! It's getting a bit ridiculous and I think tomorrow (well, later this morning!) I'll have to start looking at other options to try and help with the situation.
Sunday, July 5, 2009 7:08 PM, CDT
Lots of news... and I'm a little late getting the updates out to everyone!
I'll go all the way back to last Saturday when we did our routine trach change. It didn't go so well and we ended up having to put in a smaller size trach because we had so much difficulty with his regular one. It was not an experience I care to repeat ever again but all in all, Caelan recovered from it quite quickly -Probably faster than the rest of us!
I called the hospital to let them know what had happened and they advised us to call our ENT doctor on Monday and let them decide on how to proceed since they knew Caelan best. As a result we ended up with an ENT appointment for Friday morning. (During this appointment his ENT Dr. was able to change the trach back to the regular size without any problem.)
Then on Canada Day we brought Caelan into CHEO because he just hadn't been himself since the trach change. Although this could be just a coincidence it seemed to me that he had much more secretions since his trach change and was coughing and spitting up more and more. I was hoping for a quick fix - change the trach back up to the correct size and all would be well... But there was also a bit of a fever. So... they did a chest x-ray to rule out any aspirations that may have caused pneumonia and a urinalysis to be safe with the solitary kidney. The chest x-ray showed some cloudiness in the lower left lung, and the prelimnary results from the urine sample looked good. We were given an antibiotic and sent home. If anything worsened we were to return.
Well overnight there weren't really any signs of improvement. In fact it was the opposite, we were really concerned because the liquid he was spitting up and pushing up his vent tube now had brown granules. As I prepared to head back to CHEO it became more and more brown and then a dark green... I could only imagine where he was pulling this from ... let's just say I've changed enough of his diapers to recognize the colour and didn't think this could be a good thing any way you looked at it!
The emergency doctors revisisted the results from Canada Day's tests and advised that the x-ray technician's report didn't feel that there really was 'cloudiness' in the lower left lung but that it was the texture of his lung they could see, basically just the way he is. They also advised that the cultures from the urine sample were growing bacteria and that they strongly suspected a urinary tract infection. They wanted to be sure so another urine sample was taken and to rule out any obstructions or blockages an abdominal x-ray was ordered. The results of the x-ray were all good but because of all his spitting up they felt it best to get an IV started to get some fluids into him, and start him on an antibiotic to treat the UTI (Urinary Tract Infection). So on July 2, 2009 Caelan was again admitted into CHEO.
He's been in isolation up until today because many of his symptoms correspond with the H1N1 Flu (cough, fever, respiratory distress, vomit -- he's a baby with a trach?!!?? - oh, well better safe than sorry... and I have to admit being in an isolation room all to yourself is the best way to visit the fourth floor at CHEO!) They've also done blood work to confirm that he doesn't have H1N1.
So, yah, it sucks... Caelan's back in the hospital. But we knew this would be the road. However, if you had seen Caelan earlier this week, we knew there was something off. He just wasn't himself. He was irritable, cranky and down right miserable. There were no smiles, he wasn't interested in playing and had a hard time sleeping, always restless.
After the first 24 hours on the IV antibiotic I would say that Caelan was 80% himself. He was a much happier little boy, playing and giving some small smiles. Today he's 100% Caelan - flirting with all the nurses. The doctor has suggested, and we've agreed, to keep him on the IV antibiotics for a good 5 days. We want to make sure we kick this thing since obviously it holds a much greater risk for Caelan and his solitary kidney.
It sure is strange being home without him though... The doctor who is overseeing him advised on Friday that he was on for the next 8 days - he's the same doctor who discharged him initially way back in March - anyway, we half joked that he would get to discharge him again and he agreed... so we're not planning an extended stay! Can't wait to have him home again, but we won't rush the recovery.
I'll go all the way back to last Saturday when we did our routine trach change. It didn't go so well and we ended up having to put in a smaller size trach because we had so much difficulty with his regular one. It was not an experience I care to repeat ever again but all in all, Caelan recovered from it quite quickly -Probably faster than the rest of us!
I called the hospital to let them know what had happened and they advised us to call our ENT doctor on Monday and let them decide on how to proceed since they knew Caelan best. As a result we ended up with an ENT appointment for Friday morning. (During this appointment his ENT Dr. was able to change the trach back to the regular size without any problem.)
Then on Canada Day we brought Caelan into CHEO because he just hadn't been himself since the trach change. Although this could be just a coincidence it seemed to me that he had much more secretions since his trach change and was coughing and spitting up more and more. I was hoping for a quick fix - change the trach back up to the correct size and all would be well... But there was also a bit of a fever. So... they did a chest x-ray to rule out any aspirations that may have caused pneumonia and a urinalysis to be safe with the solitary kidney. The chest x-ray showed some cloudiness in the lower left lung, and the prelimnary results from the urine sample looked good. We were given an antibiotic and sent home. If anything worsened we were to return.
Well overnight there weren't really any signs of improvement. In fact it was the opposite, we were really concerned because the liquid he was spitting up and pushing up his vent tube now had brown granules. As I prepared to head back to CHEO it became more and more brown and then a dark green... I could only imagine where he was pulling this from ... let's just say I've changed enough of his diapers to recognize the colour and didn't think this could be a good thing any way you looked at it!
The emergency doctors revisisted the results from Canada Day's tests and advised that the x-ray technician's report didn't feel that there really was 'cloudiness' in the lower left lung but that it was the texture of his lung they could see, basically just the way he is. They also advised that the cultures from the urine sample were growing bacteria and that they strongly suspected a urinary tract infection. They wanted to be sure so another urine sample was taken and to rule out any obstructions or blockages an abdominal x-ray was ordered. The results of the x-ray were all good but because of all his spitting up they felt it best to get an IV started to get some fluids into him, and start him on an antibiotic to treat the UTI (Urinary Tract Infection). So on July 2, 2009 Caelan was again admitted into CHEO.
He's been in isolation up until today because many of his symptoms correspond with the H1N1 Flu (cough, fever, respiratory distress, vomit -- he's a baby with a trach?!!?? - oh, well better safe than sorry... and I have to admit being in an isolation room all to yourself is the best way to visit the fourth floor at CHEO!) They've also done blood work to confirm that he doesn't have H1N1.
So, yah, it sucks... Caelan's back in the hospital. But we knew this would be the road. However, if you had seen Caelan earlier this week, we knew there was something off. He just wasn't himself. He was irritable, cranky and down right miserable. There were no smiles, he wasn't interested in playing and had a hard time sleeping, always restless.
After the first 24 hours on the IV antibiotic I would say that Caelan was 80% himself. He was a much happier little boy, playing and giving some small smiles. Today he's 100% Caelan - flirting with all the nurses. The doctor has suggested, and we've agreed, to keep him on the IV antibiotics for a good 5 days. We want to make sure we kick this thing since obviously it holds a much greater risk for Caelan and his solitary kidney.
It sure is strange being home without him though... The doctor who is overseeing him advised on Friday that he was on for the next 8 days - he's the same doctor who discharged him initially way back in March - anyway, we half joked that he would get to discharge him again and he agreed... so we're not planning an extended stay! Can't wait to have him home again, but we won't rush the recovery.
Tuesday, July 7, 2009
Caelan's home! Hooray!
Just a quick visit at CHEO this time. Five days on the IV antibiotics and now he'll be on antibiotics at home for nine days.
He was very happy to see his big sisters and had some really big smiles to greet them with.
We're all happy to have him home.
No offence to CHEO but we'd like to stay away a little longer this time!
Just a quick visit at CHEO this time. Five days on the IV antibiotics and now he'll be on antibiotics at home for nine days.
He was very happy to see his big sisters and had some really big smiles to greet them with.
We're all happy to have him home.
No offence to CHEO but we'd like to stay away a little longer this time!
Friday, July 10, 2009
Another milestone for Caelan yesterday...
He rolled over from his back onto his tummy AND was happy about it!! He's done this before but more by accident and was always upset with the outcome. Yesterday he was reaching for a toy and although he ended up on his tummy he was thrilled to have the toy in his hand. We've been working on sitting and his neck strength is definitely improving which probably explains why the tummy time was accepted this time since he had more control over his head. Still a ways to go though...
We met with Genetics at CHEO yesterday and heard the results from our blood tests. Neither Damian or I have the same gene mutation as Caelan; the little guy made it all up himself.
This morning we're off to CHEO again for a fluroscopy (??). Basically, it's a video x-ray that allows us to watch what happens when Caelan swallows. The exciting part is that we're going to give him applesauce for the first time - actually it's exciting to give him anything in his mouth and I'm so happy that it's not his neocate. I've said this before, but that stuff stinks and I almost think he's lucky he doesn't have to taste it!!
He rolled over from his back onto his tummy AND was happy about it!! He's done this before but more by accident and was always upset with the outcome. Yesterday he was reaching for a toy and although he ended up on his tummy he was thrilled to have the toy in his hand. We've been working on sitting and his neck strength is definitely improving which probably explains why the tummy time was accepted this time since he had more control over his head. Still a ways to go though...
We met with Genetics at CHEO yesterday and heard the results from our blood tests. Neither Damian or I have the same gene mutation as Caelan; the little guy made it all up himself.
This morning we're off to CHEO again for a fluroscopy (??). Basically, it's a video x-ray that allows us to watch what happens when Caelan swallows. The exciting part is that we're going to give him applesauce for the first time - actually it's exciting to give him anything in his mouth and I'm so happy that it's not his neocate. I've said this before, but that stuff stinks and I almost think he's lucky he doesn't have to taste it!!
Friday, July 10, 2009
Well, they called the feeding study a success although I'm not sure that Caelan would agree... Nor would I agree that what he got to taste was applesauce! I understand that it needs to be mixed with some radioactive stuff so they can see it on the x-ray but this looked a lot like glue. When Caelan wouldn't swallow it they had a thick liquid in a bottle that we tried to get him to take to help wash it down and when he would have none of that we used a syringe to squirt a thinner liquid into his mouth. I wouldn't say that Caelan enjoyed any of the experience, in fact, I would say he was down right offended! However, he did swallow and it was considered 'a good one'. I presume this means it all went the right way. We have a meeting next Tuesday to discuss some ways of making the whole oral eating experience a more pleasant one for him... I'm thinking of putting a little maple syrup on a spoon and letting him give that a try!
Sunday, July 12, 2009
Well I wish I had a better update to give... we've had a rough weekend.
Caelan started vomiting on Friday and I tried giving every excuse possible; he ate that awful paste stuff in the feeding study and got himself all upset, too long in the car seat, too hot, too tired, etc... He was still pretty happy and smiley, still interested in playing so I was trying hard to convince myself that there wasn't anything to be too worried about. But when this continued over into a very restless night with no good peacefull sleep and still throwing up we decided on Saturday morning to bring Caelan back to the emergency room at CHEO.
We went through all the same testing; blood work, urinalysis, chest x-ray. This time they started the IV right away to get him some fluids and before too long he was getting antibiotics again. His blood work had come back with a high white blood cell count and although the specific infection was unknown at this time they were already suspecting another urinary tract infection. I find it so hard to believe that you could get another UTI while still being treated for one but apparently it's another strain that doesn't respond to the antibiotic he was on. As I mentioned before, UTI's are scary stuff because of Caelan's solitary kidney. We will be meeting with both urology and nephrology later this week.
We knew he was being admitted long before 5 o'clock but unfortunately there were no nurses on the floor to look after him. Initially we were told it would be around eight that night, after the next shift started at 7:30, before they could accept him on the floor... but that turned into around 11:30 when someone could come in to cover for the staffing shortages... and that turned into 12:45am because a trauma came into the emergency room and chaos broke out bumping Caelan pretty low on the priority list. It was a very frustrating evening in the emergency room at CHEO
It was a very long day, especially because my day had started at 3am. That's right, we had no nurse again on Friday. So after a 22 hour day I was exhausted and ready to go home to bed!
Caelan started vomiting on Friday and I tried giving every excuse possible; he ate that awful paste stuff in the feeding study and got himself all upset, too long in the car seat, too hot, too tired, etc... He was still pretty happy and smiley, still interested in playing so I was trying hard to convince myself that there wasn't anything to be too worried about. But when this continued over into a very restless night with no good peacefull sleep and still throwing up we decided on Saturday morning to bring Caelan back to the emergency room at CHEO.
We went through all the same testing; blood work, urinalysis, chest x-ray. This time they started the IV right away to get him some fluids and before too long he was getting antibiotics again. His blood work had come back with a high white blood cell count and although the specific infection was unknown at this time they were already suspecting another urinary tract infection. I find it so hard to believe that you could get another UTI while still being treated for one but apparently it's another strain that doesn't respond to the antibiotic he was on. As I mentioned before, UTI's are scary stuff because of Caelan's solitary kidney. We will be meeting with both urology and nephrology later this week.
We knew he was being admitted long before 5 o'clock but unfortunately there were no nurses on the floor to look after him. Initially we were told it would be around eight that night, after the next shift started at 7:30, before they could accept him on the floor... but that turned into around 11:30 when someone could come in to cover for the staffing shortages... and that turned into 12:45am because a trauma came into the emergency room and chaos broke out bumping Caelan pretty low on the priority list. It was a very frustrating evening in the emergency room at CHEO
It was a very long day, especially because my day had started at 3am. That's right, we had no nurse again on Friday. So after a 22 hour day I was exhausted and ready to go home to bed!
Tuesday, July 14, 2009
Our little man is slowly getting back to himself, more smiles every day as the antibiotics kick in.
Yesterday I got a more thorough explanation on the "UTI while being treated for a UTI" thing. Apparently the last time he was in they found two different bacterias in the urine culture. Both responded to the amoxicillan. However, a third bacteria was either hiding really well or showed up after the sample was taken (possibly being introduced through the catheters he had to gather the urine samples). Anyway that third bacteria didn't respond to the amoxicillan, so while the other bugs were being destroyed this new one was getting stronger with more room to party. That's how I understand it anyway!
Caelan's been seen by Infectious Disease to ensure that there's no underlying concerns with the two UTI's so close together and they'll be making the call on which antibiotics he'll be on and for how long. They're the bacteria and bug experts.
The urology resident came up to gather information and will report back to our Doctor. It sounds like they'll want to do another cystogram (vcug) when he's feeling better to get a clear picture on the extent of the reflux first. I think we'll be discussing that procedure to reduce or prevent the urinary reflux earlier than initially anticipated.
On the agenda for today is another abdominal ultrasound to check his kidney and see if it's more inflamed and a visit from nephrology. It's also the day we were supposed to visit Occupational Therapy to discuss how to start making food in his mouth an enjoyable experience!
Yesterday I got a more thorough explanation on the "UTI while being treated for a UTI" thing. Apparently the last time he was in they found two different bacterias in the urine culture. Both responded to the amoxicillan. However, a third bacteria was either hiding really well or showed up after the sample was taken (possibly being introduced through the catheters he had to gather the urine samples). Anyway that third bacteria didn't respond to the amoxicillan, so while the other bugs were being destroyed this new one was getting stronger with more room to party. That's how I understand it anyway!
Caelan's been seen by Infectious Disease to ensure that there's no underlying concerns with the two UTI's so close together and they'll be making the call on which antibiotics he'll be on and for how long. They're the bacteria and bug experts.
The urology resident came up to gather information and will report back to our Doctor. It sounds like they'll want to do another cystogram (vcug) when he's feeling better to get a clear picture on the extent of the reflux first. I think we'll be discussing that procedure to reduce or prevent the urinary reflux earlier than initially anticipated.
On the agenda for today is another abdominal ultrasound to check his kidney and see if it's more inflamed and a visit from nephrology. It's also the day we were supposed to visit Occupational Therapy to discuss how to start making food in his mouth an enjoyable experience!
Tuesday, July 14, 2009
Another busy day up on the fourth floor at CHEO... but before I get today I should mention a couple of important things that I missed about yesterday-
Caelan's out of isolation, once again he tested negative for H1N1 flu, stopped throwing up and all his blood cultures came back clear.
He also lost his IV in the evening. This is never a good thing since Caelan's not considered an easy poke. It's always tricky finding good veins on him and the nurses often seem amazed at all his scars from previous blood work and IV's. Add to that the fact that Caelan freaks as soon as the blue rubber band is tied around a limb, it's just never a good time. I can't blame him as I tend to freak at the rubber band too... Anyway this time it's in his foot and I spent much of today pulling the IV board out of his mouth!!
Speaking of things in his mouth... Today was super exciting!! We gave him some blue applesauce (just applesauce with blue food colouring in it). I held the spoon with the applesauce on it and he grabbed my hands and pulled the spoon into his mouth - what a surprise! Again he seemed offended at this new substance in his mouth, but he recovered much quicker than the test with the barium/radioactive paste stuff. In fact, we got a little sneaky and dipped his keys (chew toy) into the applesauce and then gave him the keys, which he immediately put in his mouth. Again not impressed with the trick but recovered even quicker and then reached for the keys again!! This whole time our Occupational Therapist and I are cheering him on and waving our arms like a bunch of crazies, but the distractions worked and he seemed to be tolerating the experience - not sure I could say he enjoyed it yet but it was so much better than Friday and gave me such hope. We even got a smile in there between tastes! I wish I'd had my camera with me because he had this great big blue grin, blue lips, blue tongue, with blue hands and fingernails - quite a sight!!
Damian was able to meet with the Urologist who gave him a brief overview of two surgical options to prevent the reflux and protect Caelan's kidney. He isn't saying that we have to do this immediately but there is definitely a concern with the three UTI's in 7 months. He'd still like to review things further and wanted to make sure we knew there were two different surgical procedures to consider. One is a much simpler procedure, only 20 minutes. They use a collagen injection to prevent the reflux but over time the body will naturally break this down and it's only got an 80% success rate. The other procedure is much more invasive, it's an hour and a half surgery where everything is basically redirected. We'll be scheduled for an appointment with urology following discharge to discuss things further.
Nephrology came by for a visit earlier in the morning. There is a concern that his blood pressure is slightly higher than usual and I understand that this could be indicative of kidney problems. So we're keeping a close watch on that. They were also waiting on the ultrasound that was supposed to have happened yesterday before making any decisions. He finally had that abdominal ultrasound late this afternoon. We haven't heard any results yet but this will also help determine his length of stay and time on the IV antibiotics.
Caelan's out of isolation, once again he tested negative for H1N1 flu, stopped throwing up and all his blood cultures came back clear.
He also lost his IV in the evening. This is never a good thing since Caelan's not considered an easy poke. It's always tricky finding good veins on him and the nurses often seem amazed at all his scars from previous blood work and IV's. Add to that the fact that Caelan freaks as soon as the blue rubber band is tied around a limb, it's just never a good time. I can't blame him as I tend to freak at the rubber band too... Anyway this time it's in his foot and I spent much of today pulling the IV board out of his mouth!!
Speaking of things in his mouth... Today was super exciting!! We gave him some blue applesauce (just applesauce with blue food colouring in it). I held the spoon with the applesauce on it and he grabbed my hands and pulled the spoon into his mouth - what a surprise! Again he seemed offended at this new substance in his mouth, but he recovered much quicker than the test with the barium/radioactive paste stuff. In fact, we got a little sneaky and dipped his keys (chew toy) into the applesauce and then gave him the keys, which he immediately put in his mouth. Again not impressed with the trick but recovered even quicker and then reached for the keys again!! This whole time our Occupational Therapist and I are cheering him on and waving our arms like a bunch of crazies, but the distractions worked and he seemed to be tolerating the experience - not sure I could say he enjoyed it yet but it was so much better than Friday and gave me such hope. We even got a smile in there between tastes! I wish I'd had my camera with me because he had this great big blue grin, blue lips, blue tongue, with blue hands and fingernails - quite a sight!!
Damian was able to meet with the Urologist who gave him a brief overview of two surgical options to prevent the reflux and protect Caelan's kidney. He isn't saying that we have to do this immediately but there is definitely a concern with the three UTI's in 7 months. He'd still like to review things further and wanted to make sure we knew there were two different surgical procedures to consider. One is a much simpler procedure, only 20 minutes. They use a collagen injection to prevent the reflux but over time the body will naturally break this down and it's only got an 80% success rate. The other procedure is much more invasive, it's an hour and a half surgery where everything is basically redirected. We'll be scheduled for an appointment with urology following discharge to discuss things further.
Nephrology came by for a visit earlier in the morning. There is a concern that his blood pressure is slightly higher than usual and I understand that this could be indicative of kidney problems. So we're keeping a close watch on that. They were also waiting on the ultrasound that was supposed to have happened yesterday before making any decisions. He finally had that abdominal ultrasound late this afternoon. We haven't heard any results yet but this will also help determine his length of stay and time on the IV antibiotics.
Friday, July 17, 2009
We were told yesterday that we could bring Caelan home today, however I'm not convinced it will happen until we're actually out those CHEO doors!
There are a couple of reasons for this... First they decided to take another urine sample last night and I guess it came back less than perfect. They're considering doing a catheter to get another urinalysis this morning. Caelan also lost his IV overnight so hasn't received his full five days of IV antibiotics. Infectious Disease will be consulted this morning to determine if they're confident we've destroyed this bug and are safe to go home on 'oral' antibiotics (feeding tube). I really don't want him to have to get another IV for such a short period of time, but at the same time I don't want to be back in CHEO starting from scratch all over again because we didn't wipe this thing clear! What a roller coaster ride!!
Good news is that we tried another oral (in his mouth!) feed yesterday. The blueberry applesauce went everywhere, including in his mouth, and again although it would be difficult to say he was enjoying the experience he was going back for more. His cheering team has expanded and I think he was thrilled with all the attention. Whatever works!
So I'm keeping my fingers crossed that the next journal entry will be to tell you he's home...
There are a couple of reasons for this... First they decided to take another urine sample last night and I guess it came back less than perfect. They're considering doing a catheter to get another urinalysis this morning. Caelan also lost his IV overnight so hasn't received his full five days of IV antibiotics. Infectious Disease will be consulted this morning to determine if they're confident we've destroyed this bug and are safe to go home on 'oral' antibiotics (feeding tube). I really don't want him to have to get another IV for such a short period of time, but at the same time I don't want to be back in CHEO starting from scratch all over again because we didn't wipe this thing clear! What a roller coaster ride!!
Good news is that we tried another oral (in his mouth!) feed yesterday. The blueberry applesauce went everywhere, including in his mouth, and again although it would be difficult to say he was enjoying the experience he was going back for more. His cheering team has expanded and I think he was thrilled with all the attention. Whatever works!
So I'm keeping my fingers crossed that the next journal entry will be to tell you he's home...
Friday, July 17, 2009
Caelan is HOME!!! I wasn't sure it would happen but we made it, we're all home again. Ten more days of antibiotics ahead of us ... at least we're all under one roof.
He gave that blueberry applesauce another try today before we left but it's still no big hit. We basically just have to make it part of our daily routine until he realizes that this funny stuff in his mouth is a good thing and that it's not going away!
Even more exciting though is that Cealan's first tooth has pushed through!!! Hooray! Maybe now we can stop partying in the middle of the night!?!?
He gave that blueberry applesauce another try today before we left but it's still no big hit. We basically just have to make it part of our daily routine until he realizes that this funny stuff in his mouth is a good thing and that it's not going away!
Even more exciting though is that Cealan's first tooth has pushed through!!! Hooray! Maybe now we can stop partying in the middle of the night!?!?
Saturday, July 18, 2009
What a good family day! All five of us went to the museum of science and technology. Caelan slept through most of it though... When he was awake he was all smiles, especially going through the tunnels with all the different colour lights. He just didn't know where to look! We came home and the girls swam while Caelan hung out on the deck in his playpen until the rain came.
When it came to blueberry time, I think the little guy has decided that he's done with it. He actually turned his head away from the spoon tonight. If we handed him the spoon, he looked at it and dropped it over the edge of the high chair and then gave us the 'not amused' face. Completely uninterested. He wouldn't even take his keyes! Maybe it's a good thing that we're through three days of blueberries and we can try a new flavour tomorrow!
Oh yah, and there was no party last night or early this morning. He slept the whole night through. Must feel good to be back in his own bed!
When it came to blueberry time, I think the little guy has decided that he's done with it. He actually turned his head away from the spoon tonight. If we handed him the spoon, he looked at it and dropped it over the edge of the high chair and then gave us the 'not amused' face. Completely uninterested. He wouldn't even take his keyes! Maybe it's a good thing that we're through three days of blueberries and we can try a new flavour tomorrow!
Oh yah, and there was no party last night or early this morning. He slept the whole night through. Must feel good to be back in his own bed!
Thursday, July 30, 2009 10:37 AM, EDT
Well we've tried the bleuberry applesauce, sweet potato, peaches and carrotts and it would be difficult to say that Caelan prefers any one over another. He still turns his head and throws the spoon over the edge, on occasion he manages to spit it out of his mouth, but mostly he just tries to dodge the spoon altogether. At least he's not crying. It really is quite entertaining since it seems he enjoys it most when we cheer him on. Not sure how long that can last as I envision us years from now in a public restaurant cheering Caelan on like a bunch of very enthusiastic sports fanatics as he puts every mouthful in!! For now that's the routine though. Whatever it takes for him to 'accept' this stuff in his mouth.
We've finished the antibiotics and are still at home... I have to admit he's making me nervous though since he's been throwing up a lot more often and I fear we're headed towards another infection. In fact, one week after we were out of the hospital, last Friday we were at the hospital for an appointment when we stopped into the emergency room because I was so convinced that this was the case. He had thrown up 4 times in the hour and half appointment. However, the urine test came back negative and I've never been happier to be wrong!
Yesterday we had our ENT appointment. We started off in audiology for some fancy big boy hearing tests. They seemed happy with the results and determined he's at about the 7-8 month old stage. Not bad for a 9 month old that was in CHEO for the first five months... way to go Caelan!
While we were with ENT I confessed that I was rather nervous about the trach change that was due and asked if our doctor would mind if we did it then so he could assist me if we ran into any troubles. He was more than willing to assist and reassured me that it was completely normal that I be anxious about it. I'm pleased to say that I did it without any trouble at all! "Easy peasy lemon squeezy" as the girls would say! :) Phew!
On a similar topic I had my first experience with having to reinsert Caelan's mic-key. I felt awful enough given that it was my fault it came out; I caught in on the edge of his crib as I was laying him down. He wasn't impressed and neither was I, talk about guilt ridden. I calmed him down (and myself) and got out the emergency kit. I was very proud of myself that I was able to reinsert it without too much difficulty.
As for our nurses... I have been reassured that they are in the process of hiring two nurses, specifically with Caelan in mind. We've had no nurse the past two Sundays and we don't have anyone scheduled for tonight either. I can't wait for the day when we're able to put Caelan down in his crib in his own room for the night and walk down the hall to our own bedroom. That's one of the dreams I've been holding onto lately, when our need for night nursing is over! Oh, the party we'll have!
We've finished the antibiotics and are still at home... I have to admit he's making me nervous though since he's been throwing up a lot more often and I fear we're headed towards another infection. In fact, one week after we were out of the hospital, last Friday we were at the hospital for an appointment when we stopped into the emergency room because I was so convinced that this was the case. He had thrown up 4 times in the hour and half appointment. However, the urine test came back negative and I've never been happier to be wrong!
Yesterday we had our ENT appointment. We started off in audiology for some fancy big boy hearing tests. They seemed happy with the results and determined he's at about the 7-8 month old stage. Not bad for a 9 month old that was in CHEO for the first five months... way to go Caelan!
While we were with ENT I confessed that I was rather nervous about the trach change that was due and asked if our doctor would mind if we did it then so he could assist me if we ran into any troubles. He was more than willing to assist and reassured me that it was completely normal that I be anxious about it. I'm pleased to say that I did it without any trouble at all! "Easy peasy lemon squeezy" as the girls would say! :) Phew!
On a similar topic I had my first experience with having to reinsert Caelan's mic-key. I felt awful enough given that it was my fault it came out; I caught in on the edge of his crib as I was laying him down. He wasn't impressed and neither was I, talk about guilt ridden. I calmed him down (and myself) and got out the emergency kit. I was very proud of myself that I was able to reinsert it without too much difficulty.
As for our nurses... I have been reassured that they are in the process of hiring two nurses, specifically with Caelan in mind. We've had no nurse the past two Sundays and we don't have anyone scheduled for tonight either. I can't wait for the day when we're able to put Caelan down in his crib in his own room for the night and walk down the hall to our own bedroom. That's one of the dreams I've been holding onto lately, when our need for night nursing is over! Oh, the party we'll have!
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