History of this blog - Part 1: our time at CHEO

Monday, October 27, 2008

Our son was born on Sunday October 19, 2008 at 10:06am. He weighed 5 lbs, 13 oz. and has strawberry blond hair.
To update everyone... it was discovered later that day that Caelan was born with some differences... first his esophagus was not attached to his stomach. This could be fixed with surgery and Caelan was transferred to the CHEO neonate intensive care unit. Surgery was planned for Monday. However the pre surgery work up of blood work, ultrasounds and an echocardiogram caused the surgery to be delayed until Tuesday, so that all the appropriate people had reviewed everything... We got a surprise when we were told that Caelan only had one kidney. Something that hadn't been realized in any prenatal ultrasound. It seems to be working at an acceptable level but we're keeping an eye on it. AND ... It was found that Caelan's heart also had some unique qualities. He had what's called a vascular ring in the precise area where the esophagus-stomach surgery would be taking place. Cardiovascular surgeons would correct the vascular ring at the same time and surgery was delayed until Wednesday.
The surgery went good. There was a little more of a gap than they had hoped between the esophagus and the stomach, resulting in a little more tension than they would have liked, but the surgeons were all happy with how it all went.
Caelan spent the next couple days "snowed" - very sedated to prevent any wriggling or squirming that could hurt the repairs. He was also put on a ventilator to help him breath post op. since he'd be sedated to the point that he wouldn't breath on his own. On Saturday they attempted to remove the breathing tube which didn't go so well and unfortunately he had to be re-intubated... it wasn't a very good day.

So we're currently working on the next phase of the plan... He's got lots of specialists reviewing all his bits and pieces and I can't say enough good things about all the amazing nurses and doctors at CHEO - they are a very special group of people...

 


Proud Mommy and Daddy xo

 





Caelan post-op with all his 'stuff' in the NICU



 Sunday, November 9, 2008

Caelan's recovery from surgery is going well... Getting him feeding is a slow process... we were up to 10 cc/hour but the little guy started having reflux and spitting up the milk in his tummy. This is all through a feeding tube that bypasses the surgical site and goes directly to his stomach. The feeding tube is weighted and we would like it to actually be past his stomach and in his duodenum but that doesn't seem to suit Caelan's plan, so we wait...

Caelan seems to like to do things his own way. He's developed pneumonia. The doctors believe that some of the milk he spit up has landed in his lungs. We've added antibiotics to his cocktail of sedatives and medications. This will probably further delay our attempts at getting him off the ventilator. (The last time they tried, the nerve to his vocal cord seems to have been stretched during surgery, since it was in the exact area they were working - basically the nerve got pissed off and refuses to tell the vocal cord to move when Caelan tries to breath... the nerve needs time to calm down and decide to work again... it's possible that he'll need a tracheostomy)

We met with the doctors on October 31 to discuss the link between all of Caelan's differences. Caelan has what's called CHARGE syndrome. For more information visit www.chargesyndrome.org or www.chargesyndrome.ca
It's a syndrome with a lot of different symptoms... some Caelan has, others he doesn't and maybe never will. The name of the syndrome is an acronym.

C= coloboma, which refers to an incomplete forming of the eyes. The opthamologist believes that Caelan will have limited/poor vision in his left eye, and worse in his right.

H= heart abnormalities, Caelan's heart is working well, but is unique with the main aorta going right instead of left and the vascular ring that has already been repaired.

A= ok there's a fancy medical term, but it's basically his esophagus/stomach stuff.

R= retarded growth, we've been told to expect developmental delays and that he'll probably be smaller than average.

G= genitalia displasia (I think? doing this by memory??) and urological... this is with regards to his kidney/bladder concerns.
E= ears, hearing loss is expected with CHARGE children. In Caelan's case an MRI showed that he could potentially be missing some canals in his inner ear. They measure 2mm in adults and they were unable to move Caelan into the exact position they wanted to, that's why they aren't sure. However because hearing loss is common, we're basically working on the assumption that they aren't there and potentially he won't be able to hear.

He's got a long road ahead of him... but lots of support and love surrounding him... and man, he's still as cute as ever... if I do say so

Monday, November 17, 2008  

This morning Caelan had an upper GI test in preparation for his next surgery... it's basically to get a better picture of his intestines and make sure that all looks good.

He also had an audiology test to check his hearing... we got GREAT news, Caelan has normal hearing levels in his right ear. HOORAY! We are SO happy about this. We haven't received the full report yet, but understand there is some hearing loss in the left ear.

Feels wonderful to have a good news day. :)

Tuesday, November 18, 2008

Caelan had surgery again today. He had a fundoplication which basically means the surgeon wrapped the upper part of his stomach around his esophagus to tighten the opening and try and reduce if not prevent the reflux. They also inserted a feeding tube directly through his tummy into his stomach.

The surgery went well. A little harder simply because his stomach had already been stretched by the first surgery (joining his esophagus and stomach). This means that Caelan's stomach is now more elongated vertically as opposed to sitting cradled inside his tummy. It's also quite small so when he does start feeding it will have to be on a very small amount and a slow infusion, but that won't be for a couple days and after another test to ensure that there aren't any leaks around the surgical site.

For now, Caelan will spend some time nicely sedated while he recovers from the operation.

Wednesday, November 19, 2008

Happy 1 month Birthday Caelan!!

Thursday, November 20, 2008

A very sedated Caelan started getting food through his new feeding tube today. It's on a very slow infusion, at a rate of 1ml per hour. Baby steps... :)

Monday, November 24, 2008

Over the past few days Caelan has steadily increased his formula intake (up to 7cc/hour) and has been gradually weened off his assortment of medications. He's finished his antibiotic for pneumonia, he's off his sedative, and his pain medication has been reduced by more than half.

All this has made Caelan a much more alert and active little guy - and someone who is not particularly happy about having a tube down his throat, understandably! He wears boxing gloves (socks on his hands) to prevent him from pulling the tube out on his own - he has made it very clear that this is his agenda. However, the doctors have planned the extubation for tomorrow. We're all keeping our fingers crossed and everyone's had little "chats" with him to explain the importance of behaving this time around.

Tuesday, November 25, 2008

Alright... Caelan was extubated (they took out his breathing tube) this afternoon. His vocal cords are not moving but they're far enough apart that Caelan is able to breath on his own, although it's not easy. This may have to do with his wild and frantic attitude more than anything else. When he gets himself all worked up nothing seems to calm him down and the harder it is for him to catch his breath. It's been a long evening trying to comfort him and get him to settle for any length of time. He's been given three doses of the sedative that we thought we were done with to try and help. His formula has been on hold since this morning... and if he's anything like his father, the empty tummy isn't helping his cranky disposition!

We're also trying something called CPAP - which is positive air pressure. Basically, it's oxygen being pushed into his nose through nasal prongs so that he doesn't have to work so hard. It's quite the contraption and requires him to wear a hat that holds the tubes in place - again, not convinced he likes this set up, but when he does calm down it seems to help with his breathing.

We're trying everything possible to keep from having to re-intubate...

Caelan is showing some signs of withdrawal from all his medication and a new drug has been introduced. Hopefully this will help.

Friday, November 28, 2008

Just a quick update to let everyone know that Caelan is still breathing on his own with some help from the CPAP.

The new medication seems to be helping and Caelan is much calmer when awake. The extra doses of sedative that they were giving have also been reduced - not happening as often.

They started giving him his formula again on Wednesday morning and we're already up to 10cc/hr.

Oh yah, Caelan really likes his soother. He can suck away on that thing like crazy!! If only he'd swallow some of the saliva it produces!! Another thing to learn, since he couldn't swallow before the first surgery when his esophagus was attached to his stomach...

Saturday, November 29, 2008

Late yesterday afternoon Caelan got himself all worked up and was unable to settle down. He got a clean diaper, all the secretions in his mouth sucked out, changed position and we finally resorted to an extra shot of sedative in our attempts at calming him. Through all this he really struggled to breath, he lost colour and when they tested the gas levels in his blood he wasn't leaving us any choice but to put back in his breathing tube.

However, Caelan managed to calm himself down as the doctor was about to reintubate... so much so, she checked his stats and decided to give him a half hour to prove he was ok. IF he started struggling for air again she would reintubate right away. He didn't and remained calm enough the rest of the night and today.

We also checked his hemoglobin level at the same time the other blood work was done and found that it was really low and he was in need of another transfusion, which he got last night. It was great to see him all rosy cheeked again today.

It's been determined that Caelan really likes his drugs and that we can't reduce his meds the'average' way. I think Caelan has proved that he is anything but average! Anyway, "Pain Management Specialists" (I think that's what they're referred to) have been asked to provide advice on managing and reducing Caelan's pain medication. It's hard to believe that in all his time with us, it was only his first few days that he wasn't on a sedative and/or a narcotic.

In the meantime we are not reducing his medications and will conitnue to increase his formula very slowly. We wonder if the increase in his formula to 12 cc (the highest he's ever received) in combination with the reduction in his pain medication by 20%, all in the same day, was too much for him. In the future we'll make sure that food in not increased in the same time frame as a reduction in medication... at least until we speak with those specialists...

Sunday, November 30, 2008

Just coasting through the weekend... Formula up to 13cc and no change to medications.

Caelan is out of his overbed and is now in a crib!! Hopefully we'll have pictures of the new digs up soon...


Wearing his CPAP and sucking his soother

He looks so tiny in this big boy bed...



Monday, December 1, 2008

We have a plan of action - don't tell Caelan!

We're going to try increasing his formula by 1cc every other day and on the opposite days we'll decrease his pain medication by 10%

Today Caelan got a new PIC line as the plan for reducing his meds will take longer than we had originally expected. A PIC line is a more permanent type of IV that goes into a central artery and is a much more efficient way of administering medication and nutrients.

Hopefully we'll be able to max out on his formula soon as the nutrients that Caelan gets are increasing his bili levels so he's getting quite the yellow glow!!

Friday, December 5, 2008

So far, so good... the plan seems to be working.

Caelan is tolerating the increase in food and the decrease in his medication this week. He's slowly gaining weight. He was up 15 grams this morning so it's a very slow process.

He's thoroughly enjoying his soother and seems to be catching on to the whole swallowing thing. yeah!

Monday, December 8, 2008

The plan continues, so far nobody has leaked the plan to Caelan so he is still managing to follow it. We did manage to sneak in a couple of extras on the weekend by taking him off of his cpap and allowing him to breath all on his own unaided. Saturday he went about 5 hrs and Sunday I believe about 6, today when I left him it had been 8 and counting, they will put it back on tonight for bed or if he gets tired and needs the help.

Wednesday, December 10, 2008

Well, Caelan had a different plan for Monday night...

He decided that he would no longer tolerate having that CPAP contraption on his head! He's been breathing all on his own ever since. HOORAY!

Friday, December 12, 2008

Yesterday, Caelan had another bronchial scope to see if his vocal cords were moving at all. We wanted to determine if he was just growing stronger and able to push more air through cords that weren't moving or if one or both had started to move on their own. We were VERY happy to hear that his right vocal cord was moving ever so slightly. It's going to be a long road but it's great to know that we're on it and not on the fast route to a tracheostomy!

We also added some extra calories to his formula in our attempt to grow him and were able to stop the solution they were giving him (full of vitamins and minerals he get's enough of in his formula now) that was increasing his bili level and making him yellow... We're hoping that his normal colour will return soon.

We're almost done weaning off the pain medication, but as we said, it's a long process since we can only reduce it by 10% every other day... I think we have about one week left.

We were advised of the results of a cystogram test that was done on Wednesday. This checked to see if he had reflux when he went pee, meaning when urine left his bladder it also travelled back up to his kidney. This would explain why the ureter (tube going from the kidney to the bladder) was enlarged. The test confirmed that Caelan does have reflux, which is apparently common in little boys and often something they simply grow out of with time. However, the concern with reflux is that with a urinary tract infection it could potentially infect the kidney and with Caelan only having the one kidney that would be bad. For this reason Caelan will remain on antibiotics to prevent any infections.

There was also some concern about Caelan having an enlarged renal pelvis (lower part of the kidney) as this could indicate an obstruction or a blockage restricting the flow from the kidney. Another test was done today and there's no indication of a blockage. The Doctor advised that it could be enlarged because it's trying to do the work of two kidneys.

We'll be following up with the urologist in a few months.

Tuesday, December 16, 2008

Yesterday we tried changing Caelan's pain medication from PIC form (going directly into his veins) to oral (which in Caelan's case isn't really oral because it goes directly in his feeding tube). He seems to be tolerating this well and today they took out his PIC line. It's nice to get that out - it's one step closer to coming home and the longer it's in the more risk of infection.

It also means no more pumps for medications... but he has a new one that's called a "kangaroo pump" for his feeding which is similar to what we'll have once he's home.

Saturday, December 20, 2008

As a birthday present (2 months) Caelan got his first vaccine yesterday. He got the rest of his immunizations today. He seems to be handling it quite well... although I'm sure the tylenol in addition to his normal doses of morphine and clonidine help!

We also started holding his feeds for half an hour out of every three hour feed. He's still on a continuous feed of formula and still getting the same amount, it's just being infused over shorter period of time.

The next step is to increase the holding time thereby increasing the amount of food he gets over a shorter period of time until we get into more of a normal baby feeding schedule.

We're up to 7 lbs. 10 oz. from a birth weight of 5 lbs. 13 oz.

Not too much else new. The updates have been slowing down as things have been going well... which is really nice!

Monday, December 29, 2008

Over the past week we've tried a few different things with Caelan's feeding in an attempt to make him grow. We tried to feed him over 2 hours with an hour break but that didn't seem to go to well and we went back to the 2 1/2 hour feeding. We've also added varying amounts of calories to his food to help him gain weight without adding volume in his tummy. All this seems to add to the cramps and gas in his belly making him more uncomfortable and irritable, which results in him working harder on his breathing...

He also developed a urinary tract infection and started antibiotics this past Saturday... not a good infection to get anytime, but worse when you've only got one kidney. It also means another IV for 10 days - which Mommy never likes!

On a good note, Caelan was able to have a field trip out of the NICU and into a "Cuddle room" (technically still in the NICU, but a different room) to spend time alone with his family on both Christmas Eve and Christmas Day. This allowed his big sister Ryland to hold him for the first time! It was definitely a special day for all of us.



First photo of our three kids together



Very first photo of the Piché Five!!

 Saturday, January 3, 2009

Yesterday we changed Caelan back to continuous feeds in an attempt to reduce or stop the reflux. It's believed that the reflux is irritating his throat and vocal cords and that's what's causing him to be a sqeaky breather again - he has quite the stridor, meaning that every time he inhales he sqeaks like he's breathing through a pinched straw. This was only happening when he got himself all upset but is happening more often than not now...We're hoping that when ENT (ears nose and throat specialists) returns on Monday they'll do a bronchial scope to see what's going on.

Good news is Caelan now weighs about 8lbs. 3 oz and he's got the cheeks to prove it!!

Unfortunately he's "gone off" his soother... not interested in it at all... can't blame him since he's never gotten any oral feeding but it does mean that when that time comes it will probably be that much harder:(

Only a few days left on the antibiotics for the urinary tract infection... oh and we stopped the morphine today! He was getting 0.03ml every three hours and we were going to go slow and change him to 0.03 every 6 hours but I was willing to try just stopping it and see how he handled it. If he showed withdrawal symptoms at all we could go every six hours but for such a miniscule amount (hard to see in the syringe!!) it seemed silly! Keeping our fingers crossed that Caelan sees it the same way!

Sunday, January 4, 2009

Good news! I spoke to soon... Caelan sucked away on his soother this morning! Maybe he hasn't gone completely off it!

Unfortunately, that's about the end of the really good news for today...

Overnight, Caelan lost the IV he had for his antibiotic to treat the urinary tract infection. He's his mothers son and went through 4 IV's in a week, and only one was put in on the first try, most required several attempts. They tried unsuccesfully last night to get a new IV started and then tried again this morning. It was decided that Caelan would get his antibiotics through a shot in his thigh for the remaining three days.

At some point early this afternoon Caelan got fed up... he was inconsolable and they were unable to settle him. He managed to keep his oxygen levels good through it all, although his carbon dioxide levels did raise slightly. He had several reasons to be upset: he had a bowel movement - which for some reason sends him over the edge, he got his antibiotic shot in his thigh, ENT came in and did a bronchial scope of his vocal cords and they did a chest x-ray!! I think it was probably just too much for him... anyway he vomitted milk more than once. For Caelan there's too much risk of him aspirating that milk.

It's looking like the fundoplication surgery Caelan had has failed. He has definite reflux, proven by the scope performed today, his throat is red and inflammed.

He took a quick trip down to radiology where they tried to slide his feeding tube in further, past the stomach and into the duodenum. This is done using a wire to guide the tube and watching it all on an x-ray television thing. (We've attempted this before when the feeding tube went through Caelan's nose.) Unfortunately they were unsuccesful.

This means no food for the time being - I don't see this going over well. But no food through the feeding tube also means we need a way to get nutrients and vitamins into him... Given the lack of success with recent IV attempts, a surgeon came in to do a cut down and get another PIC line started. This time it's in his left arm...

Monday, January 5, 2009

We're still trying to figure out what happened yesterday!

Today involved meetings with all of Caelan's entourage, getting everyone's perspective on what the next step should be.

Caelan spent most of the day sleeping. Yesterday took a lot out of him and he's just taking some time to rest.

Wednesday, January 7, 2009

To add some excitement to his boring days, Caelan has decided to introduce some "spells" into his daily routine. This isn't good. When he gets frantically mad about having to have a bowel movement, (there are other reasons, but this one is the most common) his oxygen levels take a serious dip. His colour goes 'off' and we've resorted to bringing the oxygen mask near his face to help him catch his breath. Not sure how much it actually helps, but makes us feel like we're doing something to help him. Now, I have to believe that anyone having a fit like he is would have a dip in their oxygen levels too, we're just not all hooked up to monitors! Regardless, nobody likes how long it takes him to recover from these episodes. It certainly takes a lot out of him. Good news is that his heart rate is holding strong through the spells.

Yesterday we had a feeding study done and we have another test scheduled for Thursday. We're trying to gather information to make a decision on the next step. We're hoping to have another inter-disciplinary meeting with the entourage once all the results are in.

We restarted his feed today, not that it's anything that will fill his tummy, a whopping 1mL/hour!! It's just to keep his gut working. For his nutrition he's back on the TPN (total parenteral nutrition) and fat lipids through the PIC... have to admit I wasn't happy to see all those infusion pumps back at the bedside!

We also brought back his miniscule morphine medication of 0.02 mL, just in case he was missing it. He'll get this through his PIC every 6 hours now. He's still getting his "anti-withdrawal" medication too.

AND he gets prevacid, an anti acid for his tummy to try and help the reflux.

AND he gets a low dose general antibiotic to protect his kidney.

While the past few days have become challenging again, he's also surprised us with some awesome smiles! Some say it might just be gas, but hey, I'll take them anyway!!

Thursday, January 8, 2009

No official results from the test Caelan had today, but it looks like the fundoplication is holding?!? Doesn't make any sense to me since there is definite reflux...

During the test they put liquid down Caelan's esophagus and the muscles that should contract to push the liquid down, didn't, and the liquid pooled at the bottom of the esophagus without entering the stomach. The fact that the muscles aren't contracting is not a good thing, it's the result of the first surgery. The repair was to join his esophagus to his stomach, but there's nothing that could have been done about the muscles that should have been around the esophagus to ensure that food gets worked down that passage into the stomach...

The fact that the liquid pooled at the bottom of the esophagus means the fundoplication surgery (the tightening of the sphincter at the top of the stomach) is still holding well. This should be reducing the amount of acid reflux that Caelan experiences.

In another effort, his dietician has decided that we should try a pre-digested formula, Neocate. It may take some time to see the effect as he'll have to work the Carnation Good Start formula out of his system. So we wait and see... It may be a long wait at 1 ml/hour.

His morphine was reduced again today, instead of getting his 0.02ml every 6 hours he'll get it every 12 hours.

The best part of today was that there were more SMILES:)

Friday, January 9, 2009

Another long day...

I could sum it up in one word... intubation.

After putting up a good long fight, Caelan told us today that he'd pretty much had enough with his struggle at breathing. He was reintubated this afternoon and has been strongly medicated and sedated to help him rest after such an eventful day.

I have to admit it feels like a major step backwards. He's back in the overbed with the monitors beside him on one side and the tower of pumps and ventilator on the other... and our little Caelan, completely sedated, sleeping peacefully, and hopefully dreaming of better days.

Saturday, January 10, 2009

Caelan had a very sleepy day... too much excitement yesterday I guess!

Over the next few days we'll be trying to determine exactly how much sedation he requires to keep him comfortable and to prevent him from tearing that tube out. We restarted feeds today (1cc/hour), but have added some blue dye to it to see if he's refluxing milk or just saliva.

I miss hearing him cry... Waited so long to hear it and it felt like we only got it for a short time... To watch him cry out but hear no sound just breaks my heart. Although I am trying very hard to stay hopeful that we'll hear it again one day, just not sure when that will be.

Sunday, January 11, 2009

Another lazy day for Caelan...

We decided today that we'd start increasing his feeds by 1 cc every 3 hours, hoping to be back up to full feeds in the next 3-4 days. No blue dye has appeared in the secretions yet, but I wasn't expecting any until we were closer to full feeds.

Caelan has picked up another bad habit though... when he gets really upset now, he has taken to holding his breath to the point he's turning purple - talk about a temper tantrum!! His ventilator is on room air with minimal pressure and only a back up rate set. This means that Caelan breathes on his own and if the ventilator senses that he hasn't taken a breath in a certain amount of time then it does it for him.

Despite all the tubes for Caelan's PIC, IV and ventilator I did get to manage a little snuggle today :) It's a lot of work for the nurse to transfer him over to me, but she's a fantastic woman who understands how much it means to a mom to be able to hold her baby. I am so grateful!

Wednesday, January 14, 2009

I've missed a couple days...

On Monday we had some follow up ultrasounds done on Caelan's head and diaphram. The results are back and everything is good there. He also received his second RSV (synergis) immunization - he'll receive this monthly until cold season is officially declared over. With cold and flu season underway the hospital is also on restricted access for visitors.

Tuesday was a pretty quiet day... and I think Caelan might have listened for once as there were no breath holding episodes. We also had a visit from discharge planning, and although Caelan's still months away from homeward bound it's exciting that people are already planning and organizing for that big day!

Today, Caelan reached full feeds again. We've added blue food colouring to his neocate and now it looks like he's being fed blue kool aid! (We had put the food colouring on hold until we got to full feeds.) Now we wait and see if the secretions the nurses suction from his mouth will be blue... and of course we'll get some blue poop out of the deal too! Speaking of which, he had his first non frantic bowel movement early this morning. So I'm very hopeful that we're taking steps in the right direction.

We also finished weaning one of the pain medications that Caelan was on for the intubation. He's a hard little boy to take medication away from! He's still got his sedative, the anti-withdrawal medication, antibiotics and the anti reflux med.

We met with "The Team" this afternoon to discuss everyone's perspective on the next step. The surgeon feels that the fundoplication is strong, but Caelan's stomach is very small. We will have to be very careful as we move forward from full feeds. We spoke a lot with the ENT (Ears, Nose and Throat) surgeon and the Respirologist about Caelan's vocal cords and his struggle with breathing. Caelan will be getting a tracheostomy. This will make it easier for him to breath. It will however, be a huge impact to our family. The risk of infection with a tracheostomy is a really big deal, our house will become "Purell" central and we'll become the germ police! We'll be intitled to 40 hours/week of at home nursing care... the trick, as we understand it, will be finding a nurse! And most importantly he won't come home until we are completely comfortable with the care that he'll require. This will include suctioning out the trach, and replacing it if gets plugged... more to learn!

The surgery for the tracheostomy was scheduled for Friday afternoon but we just got a call that we've been postponed as more urgent heart surgeries take precedent.

Thursday, January 15, 2009

I'm sure you've all been waiting to hear... and yes, today a SMURF exploded in Caelan's diaper! How many people out there can say they've changed a blue diaper?? Probably more than I care to know about...

We also got blue secretions from his mouth earlier this morning. This confirms that reflux is still an issue despite not having to work hard at his breathing.

No news on surgery time yet.

Friday, January 16, 2009

We're kind of in a holding pattern right now. On full feeds. Finished the antibiotics. Still waiting for a surgery date... nothing scheduled yet...

Today I got to meet an amazing little boy. He's three and a half years old and full of beans. He also has a lot of the same differences that Caelan has. It was so encouraging to see this happy little boy bouncing around so full of energy and know that someday Caelan will be doing the same! I so very much appreciate that his mother was willing to come in to talk with me about raising a CHARGE child and share some of their struggles. I hope they know how much this meant to me; to have someone who understands completely what you're going through because they've been there. We only met for an hour but I felt like I was talking to a long lost friend and I can't wait to meet them again.

Monday, January 19, 2009

Looks like surgery might be scheduled for Wednesday afternoon and if not we're hoping for Thursday afternoon... Vague, but that's kind of how things work at CHEO, surgery time is at a premium and you never know when you might get bumped by a more urgent surgery.

Other than that we're still in the same holding pattern... no other changes...

Tuesday, January 20, 2009

At three months old, Caelan's almost 9 pounds!! Such a big boy now!

Surgery still "planned" for tomorrow afternoon

Wednesday, January 21, 2009  

ARGH! What a frustrating day!

Surgery was put off until tomorrow because the order to hold his feeds wasn't written correctly. He was taken off all his foods four hours before surgery instead of six... and the fact that it had been five hours when they came to get him was irrelevant... rules are rules!! However the rules are there for his safety so it's hard to get too upset, no matter how ridiculous it may seem.

We are rescheduled for surgery for 10:15 tomorrow morning - the orders have been checked and rechecked - his formula feed will be stopping six hours and fifteen minutes before the scheduled surgery time!:)

It's not going to be pretty... little mister Caelan likes having food in his tummy and was going a little bezerk this afternoon as the hours went on without food or the mega sedation drugs we had promised him!!

We're all anxious for this new chapter to begin...


the equivalent of being all dressed up and no place to go!  :(

Thursday, January 22, 2009

YEAH! Surgery is finally done and all is well...

Our little boy is resting comfortably... back to that "snowed" post operative state that he so enjoys! He will remain heavily sedated for a few days to allow the surgical site to heal without him moving about.

It was so nice to see his face without any tape or tubes on it. His cheeks have gotten so chubby and I made sure to cover them in kisses this afternoon!!

Monday, January 26, 2009

What a busy day!

We started weaning Caelan's medications again... this seems to be an on going theme in Caelan's life. He's on more narcotics than he's ever been since he's become more tolerant of them over time. When I look at all the pain and sedation medication that he's been on the past few days, I find it unbelievable that he was still able to look around and wiggle. This only meant they had to "top him off" with extra shots of one of his meds or some cloral hydrate to put him to sleep, as the surgeon wanted him completely still for a few days after surgery.

Today he got none of those extra shots and remained in a great mood. We also dropped his pain med by over 20% because he shouldn't be in any pain from the surgery any more. We aren't able to drop it much faster than that or we'd be even more worried about withdrawal.

Caelan was happy and awake most of the day. He even spent some of the day enjoying time in a vibrating chair. He looked like such a big boy sitting up in there. Speaking of big boy, he's done with that overbed and has moved back into his big boy crib.

Mommy got a lesson in changing his trach ties and helped a little in the process. Those were stinky! They were the same ones since surgery and weren't a very pretty site.

We also worked on weaning Caelan from the ventilator, gradually lowering the rate, although he continuously breathes over the machine. This evening we got a great call from Caelan's nurse and he is officially off the ventilator and breathing on his own! This is fantastic news and I'm so excited about going in tomorrow and scooping him up out of bed all by myself!!

Tuesday, January 27, 2009

Well it wasn't quite the "scoop him up" I had planned, but I did get to have an awesome cuddle with Caelan this morning. I could sit there all day in the rocking chair holding him... slowly losing feeling in all my limbs! Love it!

Right now Caelan has a humidity hood over his trach to keep the secretions moist. It looks a lot like a breathing mask, but it's placed over his trach and warm oxygen is pumped out. So technically he still is on oxygen, but there's no panic when he doesn't have the hood on.

We decreased more medications today and Caelan seems to be coping well.

We got another visit from Discharge Planning. All the forms have been completed and sent requesting at home nursing care for us, as well as other forms for the various equipment that will be required at home. There's still lots for us to learn before we'll be bringing Caelan home but like I've said before, it's nice to be talking about it!

Saturday, January 31, 2009

One more day and we should be off all the pain medications given through Caelan's PIC line! We finished the sedative last night and Caelan is tolerating all of this well. He still gets some medication through his feeding tube, but we're anxiously awaiting the day when we can get rid of that PIC line.

The past couple days Caelan has shown us some of his usual signs of withdrawal; sneezing, yawning, hiccups and just general irritability. We really don't want to prolong his time on the narcotics and have managed to settle him with some cloral hydrate, which is his sleeping drug (I keep thinking that stuff would sure come in handy at home!!) He hasn't needed a lot of it but it does seem to help take the edge off and help Caelan relax.

The next thing to work on is increasing Caelan's volume of formula throughout the day so that he can go for a span of 6 hours over night with no continuous feed running. Caelan was getting an anti-acid medication twice daily that required that his food be off for an hour and a half each time. We have changed that to once a day, but keeping the three hours that he was off... so we're already half way there! He's geting 27cc/hour for 21 hours a day... I think tonight the plan was to increase the time off by one hour and increase the continuous feed accordingly - as long as he tolerates it. We haven't forgotten who's boss!

The humidity hood that is placed over Caelan's trach is now only pumping room air, not oxygen and it is still warmed. However we've been told that warm humidity will not be available at home so we will have to gradually start getting him used to cooler humidity. We also tried him on a "swedish nose" today. This is a tiny contraption that attaches to the trach and captures the moisture from his own breath so he creates and uses his own humidity. It increases his mobility as he's not connected to a humidity machine... another wonderful step forward. It will take some getting used to for him though.

Still lots of learning, I've been suctioning his secretions and have changed his trach ties again as Gramma and Aunti Vicky watched on. Today I watched ENT actually change the trach and have been told that next time it's my turn... little nervous about that one, not that it looks difficult, just a little nerve racking I guess... And after all the lessons on trach ties they've been switched to these fancy velcro ones - very stylish with little ducks on them!

Most importantly, the past couple days we have enjoyed some awesome snuggling with wonderful smiles. It amazes me that our little guy that's been through so much is still so happy and full of smiles. One little smile from him will make my whole day!

Sunday, February 1, 2009

I spoke to soon... Caelan didn't tolerate his last decrease of the pain medication too well. He had a rough afternoon and horrible night. As a result we're giving him a day to adjust to it and topping him off with that sleeping drug. We also increased the anti-withdrawal medication that he's on. Hopefully he'll be in better spirits tomorrow and we'll be able to come up with a plan to get rid of that last little bit without upsetting him too much...

Tuesday, February 3, 2009

Not too much to report... we've been making adjustments to his medications and Caelan seems much happier about it.

We have also increased his continuous feed of neocate slowly over the past couple of days. He's now up to 31ml/hour over 21 hours a day.

We're scheduled to attend a modified CPR course (trach specific) on February 10th. This is something we wanted to take but also found out it was mandatory before discharge of a trach child. The paperwork and planning involved in disharge is quite overwhelming; organizing nursing, ordering equipment and co-ordinating insurance... thank goodness there is someone working on most of this for us!

Wednesday, February 4, 2009

Slight correction... Caelan decided 31 ml/hour was too much so we're holding at 30!

We also sneaked away the last of his narcotic pain medication today. I got the feeling he was missing it even though it was a whopping 0.1ml/hour infusion... we'll have to see how he does over night.

Today we gave Caelan a nice sponge bath, weighed him, changed his trach ties and feeding tube dressing - all part of our regular routine in the NICU. He weighed in at 4140 grams or 9 lbs. 2 oz. The best part of the whole routine is that you're rewarded with a cozy snuggle afterwards!

Sunday, February 8, 2009

After finishing the narcotic pain med we started weaning the narcotic sedative that we had to restart when he began showing withdrawal symptoms last weekend. Today we finished that one as well and so far, so good. Keeping our fingers crossed that we can get rid of the PIC line in the next couple days.

He's still maxed out on clonidine. I often refer to that as his 'anti-withdrawal' medication. It's not a narcotic and is given to help with withdrawal. He's taking this one through his feeding tube. Along with prevacid (to reduce stomach acid), nitrofurantoin (an antibiotic to protect his kidney), and iron.

I'm not sure what the next step will be... we have a few choices for tomorrow:

We could begin weaning the clonidine.

We could try increasing his continuous feed to allow for more time off during the night... again:(

We could work on reducing the heat in his humidity since there won't be any at home.

But you never know what tomorrow will bring, Caelan, or his doctors for that matter, may have something else entirely in mind! We'll keep you posted!

Monday, February 9, 2009

What a good day! Caelan seemed to have lots of smiles for us, despite us changing his trach ties on our own today. Not that this hurts him, but we're not the fastest at it yet and it certainly isn't his favourite part of the day! I think we did pretty good for our first shot at it tag team. We had each done it before with a nurse, but never with each other.

Caelan had a bit of trouble settling down into a good sleep last night, which we're blaming on the end of all his narcotic medications. For that reason they left his clonidine alone today.

We did increase his continuous feed to 31cc/hour over 21 hours a day and the plan is to continue to increase this daily as he tolerates it. We also added calories to his formula to help him gain weight.

AND we also took the heat out of his humidity, which didn't seem to bother him too much. He spent over an hour with the swedish nose on, sleeping and smiling. It definitely takes a little more effort for him to breath with that on but it will make him so much more mobile if he can get used to it.

It was a busy Monday. We also met with our Case Manager from CCAC, the Discharge Planner, and a wonderful lady referred to as "the ostomy lady". Each with important information and forms to get us equipped at home. The ostomy lady showed us the mickey that will replace Caelan's Foley feeding tube. She'll need to speak with Caelan's surgeon to get the go ahead to replace it but we're hoping that can be done soon.

I don't want to get too far ahead of myself - or Caelan - but it finally feels like we're making progress on the road to home, and that's a GREAT feeling!

Tuesday, February 10, 2009

What an unbelievingly frustrating day!!! ARGH!

First our Modified CPR course that was scheduled for this morning was cancelled, but someone forgot to let us know... not a good start.

ENT was supposed to come by before 3 o'clock this afternoon to change Caelan's trach while we were both there, but we were heading out the door at four to pick up the girls when they arrived!

You want to be understanding about emergencies that come up, it is a hospital after all... but at the same time, a little respect for our time would be nice! A phone call would go a long way.

Now having said all that, it was actually one of the bestest days yet because we got to spend the entire day alone with our little guy in our very own room!! It's a way for us to exercise a day pass of sorts without actually leaving the hospital, to ensure that we're comfortable with all of Caelan's care.

We began our day with a bit of a drama... Caelan pooped all over a receiving blanket, his leads, his feeding tube... it was everywhere, feet, legs, hands... just lovely... I'm happy to say Daddy was holding him. Good thing we had just weighed him and we're getting ready for a bath! He was up to 9lbs. 5 oz.

Caelan seemed to accept all the changes we made yesterday so today we went up to 32cc/hour on his formula and reduced his clonidine (the anti-withdrawal medication) from 20 to 19.

The ostomy lady did come back to say that she had spoken with the surgeon and that it was decided we would wait until Caelan was a bit bigger before putting the mickey on.

Looking forward to another "alone" day tomorrow!

Wednesday, February 11, 2009

I forgot to mention another big piece of news from yesterday... Caelan got his PIC line taken out! This is fantastic because now when you pick him up there's a lot less "spaghetti" that is attached to him. Really there's only his feeding tube!

Another good day, up on feeds and down on medication. That's the plan from here on, as tolerated.

They've also changed the timing of one of his medications to better suit home life. His prevacid has to be given during his time off of food, about a half hour before it restarts. Starting tonight, instead of getting this at 1:30 in the morning he'll be getting it at 5:30 in the morning, with his formula feed restarting at 6am. His "off time" is now up to 3.5 hours... it's going to be a slow road to 6 hours off, but there's no rush... unless of course you want him home!!

Thursday, February 12, 2009

Another wonderful day! I gave him his bath in the big boy tub this morning and he loved it, full of smiles and legs just a kicking. A nice change from Tuesday's bathing fiasco! Gained another ounce too (9lbs. 6oz)

Caelan's doing so well weaning his anti-withdrawal medication, clonidine, they've decided to go down once every 12 hours instead of every 24 hours... as tolerated. His formula is still increasing one cc/hour every day.

Today I got to assist ENT as they changed the trach... I took out the old one and they put in the new one. Both Damian and I have to replace Caelan's trach 3 times before we're allowed to bring him home. Once we're home we'll only be changing the trach monthly, but there's no harm doing it more often for learning purposes... thank goodness. Don't know what I'd do if we had to wait another 6 months before bringing him home!!

Saturday, February 14, 2009

Caelan and I had a nice quiet Valentine's Day together. Another fun bath, followed by the less fun changing of trach ties and feeding tube dressing... Caelan was exhausted after such an eventful morning and had a nice long nap. Although the nap may have more to do with his new habit of waking at 3am for fun and games! And here I thought we were all set for home with beautiful sleeping patterns of 11 to 6 or 7!! Should have known he wouldn't let us off that easy.

Another exciting event today was that I was able to walk around the room with Caelan in my arms while we got ready for his bath (something I don't really think you're supposed to do, but it felt so good!) I stopped his feed and plugged his feeding tube and with no other attachements off we went, it felt so normal!

Later in the afternoon I packed Caelan up in a more mobile crib with a portable suction unit and off we went to the cuddle room for some alone time. It was quite the operation and Caelan brings that whole concept of parents travelling heavy to a whole new level!

Tuesday, February 17, 2009  

Over the past few days it's fascinated me to watch Caelan as he discovers his ears. I really think he thinks they should be removable. The look on his face as he tries to pull them off is priceless. And then it was his hands... He gets those fingers right in front of his face and just stares at them. Can't wait until he finds those toes!

Well, today was a big day - for me anyway. I finally did it. I changed his trach entirely on my own. Pulled the old one out and put the new one in. It went really well. I was worried because Caelan was sleeping and I wasn't convinced that this was how he wanted to wake up. I was expecting some serious feedback on my timing, but I think it actually worked in my favour. He was drowsy enough in my prep, woke briefly when unable to breath (kind of understandable?!?!), and then right back to sleep! Made me feel really good about it all, and it's great to get that first one out of the way.

While on the topic of sleeping... I think our little guy is upside down and inside out! He slept today until 3 o'clock in the afternoon!! He only awoke when I'd had enough; I changed his diaper, stripped off his clothes and sat him up to tell him that enough was enough, that it was time to wake up!! He wasn't impressed. I'm very much of the "don't wake a sleeping baby" school, but there comes a time (and I think it's really before 3 in the afternoon) when you have to do something. This didn't start all of a sudden today...It actually began on Friday night and he hasn't slept a night through since.

We're finally at our six hours off overnight. We're now working towards an extra hour off that we can use at any point during the day. If he tolerates that, then we'll work on a second hour, etc... This will allow for time off his feed for a fun bath or whatever else suits his routine at home. Can't wait to find out what kind of routine that might be!

Thursday, February 19, 2009

We actually walked OUT of the unit with Caelan today and I have to admit it was VERY tempting to just keep on walking and take him home! Caelan is now off his continuous feed for an extra hour during the day (in addition to his 6 hours off at night). This made him even more mobile. So we got out the swedish nose, packed up the portable suction and put Caelan in a stroller for a leisure stroll down the Intensive Care hallways! We were out of the NICU and it felt good (and maybe a little silly walking up and down the same hallway). After that we settled in the cuddle room to watch a little boxing (Daddy's pick).

It was a busy day...

Caelan also got his four month immunizations today - what a birthday present!

I changed his trach again while Daddy watched for the first time.

We started organizing an emergency kit that will always be with Caelan.

Our sat monitor has arrived at CHEO from the vent pool so we'll start using our own monitor tomorrow to make sure we're comfortable with it.

We met with a speech language pathologist who explained how a speaking valve would work for Caelan. We have to wait until he's a little bigger and stronger but the more he tolerates his swedish nose the better it will prepare him for the speaking valve. Essentially it will allow Caelan to breath in through the trach but force him to exhale past his vocal cords, enabling Caelan to make his own noise.

We reviewed more elements of discharge planning - the end is in sight... and it's such a wonderful view! Now if only we could find a nurse!!

Sunday, February 22, 2009

On Friday, Damian successfully completed his first trach change - one down, two more to go!

We're up to two full hours off the continuous feed during the day and still have the six hours off overnight. I have to admit that I never thought he'd tolerate his feed at this rate, he's at 44mL/hour. Our little man is full of surprises!

A bit of excitement today. I'm not sure exactly how it happened, but after his bath Caelan pulled his feeding tube out. I think that while I was getting ready to change the dressing he must have caught the end of it between his toes and those legs are rarely still - he's a bicycling maching that guy! He wasn't happy about it, but settled easily while we waited for surgery to arrive to put in the new one. I almost did it myself but couldn't remember if I was supposed to! The nurses were teasing him saying he wanted a new one that matched his outfit better... I kept saying he wanted a nice new clean one before going home!

... still no news on nurses...

Wednesday, February 25, 2009

We met with genetics today. They finally received the results from the blood work that was sent to Toronto for testing for the CHARGE gene. The results were basically inconclusive and Damian and I have agreed to have ours tested to see if either of us carry the abnormal gene for CHARGE.

We were really hoping to be bringing our little guy home next week and we've done everything on our end to make this happen. I have completed my three trach changes and gone through some troubleshooting scenarios with ENT. Damian has one trach change left and it's scheduled for Friday.

Unfortunately, there just aren't the nurses in the community programs to support us right now. So, we'll be making a move out of the NICU and up to the 4th floor of CHEO once a bed is available. As much as we want Caelan home, we know that the level of around the clock care that he needs would burn us out without nursing support. The good news is that from the floor we will be allowed to have day passes to test our preparedness for his true arrival home. We're looking forward to taking full advantage of those passes!

Thursday, February 26, 2009

Great news! We have nurses! I think everyone is in shock, but we have three nurses that are willing to share 6 out of 7 nights a week. All the details still need to be figured out but we are so excited. If I understood correctly they're available for training starting the week of March 9th. This would be in the hospital and we're unsure of how long it may take. In the meantime we're still waiting for a bed on the floor to become available.

Tomorrow we're hoping to do 12 hours of full care, preferably during the day if a room is available. If not, we'll be having a sleepover - but without the sleep!

Tuesday, March 3, 2009

I don't know where to begin... we've been having computer troubles at home so I'm updating from the hospital family lounge and on a time limit!

We've received some of our equipment for Caelan. We have his feeding pump, the bags that go with that, the IV pole and the backpack. We also have his oxygen monitor. We're still waiting for his humidity compressor and his suction. It's great fun getting ready for home!

Damian and I spent a very long day last Friday with Caelan in Room 4. It was great to spend a day 'just us'. At the same time, it's a very small room with no windows and as cute as Caelan is, after 10 hours you just need to stretch your legs and see outside. We didn't stay for the sleepover. Caelan has been sleeping his nights and usually wakes once for a diaper change. We're keeping our fingers crossed that he keeps up that routine!

Caelan is completely off all his pain medications and sedatives. He finished his clonidine last week and is doing great! Now he gets; nitrofurantoin - an antibiotic for his kidney, prevacid - the anti acid for his tummy, iron and vitamin D... NO narcotics!! Hooray!

He's doing amazing with his feeds. Still on neocate at a rate of 58cc/hour!! He's on a schedule and gets fed at 6, 10, 2, 6 and 10 with about an hour and a half off in between except for the 5 1/2 hours before 6 am.

Wednesday, March 4, 2009

We've tried a couple things in the past 36 hours...

Yesterday we tried giving Caelan a little bit of formula by bottle. First time he's ever had a bottle near his lips, let alone formula - and this was fancy formula since we used blue food colouring to make sure we knew if we suctioned it out his trach. The Occupational Therapist was trying to interest him in the flavour of the formula (and I have to tell you this neocate stuff smells absolutely awful!!) and Caelan did seem to get the hang of it a bit, but not before looking like he'd devoured a blue popsicle. His lips were blue, his cheeks had blue on them, it was quite the sight! Anyway, within moments Caelan coughed and it was the colour of the bright blue ocean coming out his trach. Disappointing, but it's hard to be too upset when in the grand scheme of things he's really doing so well.

Today we tried the speaking valve. The Speech Therapist came in and as an initial test she put her finger over his trach when he exhaled. This was done ten times in a row without incident. He didn't panic or get mad, but didn't make any noise either, which is what we were kind of hoping for. The fact that he tolerated her blocking the trach was a good sign though. The speaking valve is like a one way valve that would allow Caelan to breath in through his trach, but in order to exhale he'd have to force the air past his trach, past his vocal cords and out his nose or mouth. By pushing the air past his vocal cords he should be able to make sounds or noise. We put it on, and within moments his face went red, he coughed hard and that speaking valve went flying! I guess he told us how he felt about that! Apparently that's a common reaction the first time around. We're going to give it another try on Friday.

As far as Caelan's move up to the floor... well, tis the season, cold and flu season that is. We thought we were moving upstairs on Monday evening, but then it was decided there were too many babies up there already. Good thing, because today they closed the ward he was supposed to move because of a gastro outbreak. Sometimes the NICU isn't a bad place to be!

Tuesday, March 10, 2009

Today was moving day!

I would love to say that he moved home but not quite yet. Caelan's new home is on the 4th floor. Hopefully we won't be there for long though. We've received tons of supplies for home, new things arriving every day and the home nurses are scheduled for training on Friday.

Oh and I've been meaning to mention that he's over the 10 pound mark!! Getting to be quite the big boy.

Friday, March 13, 2009

I forgot to mention the best part about Caelan's new digs - he's got a window!!! In the NICU there are NO windows at all, so this is the first time he's seen the sky - not that he's too impressed by the view.

On Wednesday the sun was shining in the window and I thought it felt so nice. I decided that on the counter by the window would be the perfect spot for his bath. Caelan wasn't convinced. It was the first time in a long time that he cried through his bath. I kept telling him this was such a wonderful treat to have the sunshine warming him through the window and he just kept 'screaming' at me!

It's quite the adjustment to be up there on the 4th floor and I'd be lying if I said we didn't miss the NICU. I miss our nurses and the comfort level of knowing everyone and everything. We were the old timers down there. It's amazing how different everything is on the 4th but we're just trying to roll with it and keeping our eyes focused on home... but I still miss our nurses, they've become a very important part of our family. We've relied on them to love and care for our son when we couldn't be there and they've done it whole heartedly and knowing that has made this experience so much easier. They are an amazing group of people.

We love you. Thank you.

We are so close to coming home we can taste it, smell it and see it!! Equipment and supplies continue to come in and with that a whole other stress level as we experience equipment malfunctions, receive incorrect supplies and don't receive the stuff we really need. It's been very frustrating but we're getting it all sorted out.

We did meet our home nurses today. There are four of them; Christine, Jessica, Mary Beth and Kylie. Four fantastic ladies that will be covering our nights for us, eleven to seven, 7 nights a week. We are so grateful for these women. It is such a relief to have this night support and I don't know how we could ever have coped without it. Caelan made sure to turn the charm on today to win them over too!

Tuesday, March 17, 2009

BIG NEWS! He's home, he's home, he's home!!!

We're a little excited to finally have our little man home!

It was a very busy weekend as we worked really hard to make sure that all the last minute details were taken care of in order to bring Caelan home.

Yesterday we were given a 24 hour pass to bring Caelan home and spend the night. It was very emotional to take him out of the hospital and into the fresh air for the first time at almost 5 months old. The girls were having a sleepover at Nana and Grampsy's so Damian and I were able to give Caelan a quiet welcome home and attempt to organize all his paraphenalia. It was a long night with Damian and I taking shifts since our home nursing doesn't start until tonight, but well worth it. Today we had to go back to the hospital so the doctors could have the final once over him and officially discharge him. The words were music to my ears and we were out of there - with one final stop in the NICU to say goodbye to the friendly faces down there.

I'm exhausted from being up all night, I ate my supper cold and I can't explain how great it feels... must have something to do with finally having the whole family together under one roof. Let the adventure continue!



Caelan saying goodbye to NICU Nurse Diane and Transport Nurse Heather