Home at last

After six very long and grueling weeks, Elyse was finally discharged from CHEO yesterday.  The last few days have been a flurry of picking up equipment, filling prescriptions, and coordinating a variety of follow up appointments over the next few weeks, but we finally made it!

so long, 4 East!

She is still using an NG tube to finish feeds, so we needed to rent a feeding pump to use at home, as well as learn to insert the NG tube ourselves.  We saw the pediatrician today, and came up with a plan to start waiting a little longer before topping her up through the feeding tube, in hopes that she will start to bottle or breastfeed more efficiently herself.  I feel like we are getting close, and hopefully being back in her home environment will help encourage her to return to old habits.  She will also continue to receive a Pulmicort (steroid) mask twice daily for another week, to treat the intubation granuloma.  Fortunately, we were able to borrow a nebulizer from the hospital to finish those treatments at home. 

aw Mom, do I have to?!

Despite having a few more challenges to work through, CHEO has been really good at supporting us through the transition home, and we are so happy to finally all be under the same roof again!  Emmett was especially pleased that they could finally wear their Halloween costumes together...better late than never!

finally reunited with his favourite dalmation

Day pass

Elyse had a good week, and continues to make progress.  Her trial off the NG tube last weekend was good, but not great, and so she is still using it for now.  The good news is that her oral feeding is getting better everyday, and she has recently taken up to half of her feed by bottle, before finishing it through the NG tube.

 

Ever since she was extubated, we had noticed she was more hoarse and wheezy than usual.  We had a consult with an ENT (ear, nose, and throat specialist), who found a granuloma (like a small bump or lesion) near her vocal cords, caused by irritation from the intubation.  She was put on an inhalable steroid for one week, and we have already noticed a reduction in her noisy breathing.

 

The highlight of the week was getting approved to take her home on a day pass over the weekend.  She was able to leave each day after her 9am assessment and medications, and would return for her 9pm ones.  Needless to say, after 5 weeks in the hospital (and 3 weeks of staying round-the-clock), it was wonderful to all be under the same roof again, even just for a few hours.

 

Emmett was overjoyed to see his sister, and would pull up a chair during her feeding sessions to keep her company.  He even let her use his favourite bunnies during her nap -- now that's love! ❤️ Now it's just a matter of tying up all the final loose ends and follow-up appointments, and hopefully it's just a matter of time before we are home for good!

 



lots of catching up to do

 

not going to let her go anytime soon!

Smiles all around

It has been a good week.  Over the last few days we have noticed Elyse's personality starting to return and she is acting more and more like her old self -- complete with smiles, giggles, and her sweet baby babbling.  She has been weaned completely off the methadone, and will continue to wean off the clonidine over the next few weeks.  Interestingly enough, clonidine is primarily a medication used to treat high blood pressure, so the slow weaning process is not so much for the withdrawal as it is for the rebound hypertension that may occur if it is discontinued too quickly.

happy to see that smile again

 

We are still struggling with her feeding, and trying to get her off of the NG tube.  After being intubated for so long, she has most likely developed a bit of oral aversion, and I can only assume some muscle weakness too.  We are working alongside the Occupational Therapy (OT) team here at CHEO, and they have been great at suggesting a few exercises and techniques to try to make her more comfortable. 

 

the wild 'do came back too

 

The other issue is that because of her feeding schedule (every 3 hours over an hour and a half), I don't think she gets hungry enough to want to drink anything else by mouth.  So this weekend we are trying without the feeding tube for a few meals, to see if she will be more willing to take the bottle when she stops feeling full all the time.  And hopefully once she is comfortable drinking from a bottle again, we can transition back to breastfeeding -- because heaven knows I'm about ready to throw this pump out the window!  The doctors have mentioned possibly bringing her home with the feeding tube still in if we need to -- but we will see how the next few days go, and keep our fingers crossed that it is the motivation she needs to start eating on her own again.

 

they have toys here too!

No news is good news? (Or just a busy week)

I wish there was more exciting news to share, but we are still here at CHEO (26 days and counting), trying to get through this recovery period.  The good news is that Elyse's respiratory virus has run it's course and her lungs have completely cleared.  The bad news is she's still in withdrawal and it really, really sucks.

the smiles are slowly returning

As we continue to wean her off the medications, each change in dose has been met with a variety of symptoms ranging from insomnia and irritability to sweating and vomiting.  We are starting to see her old personality start to return, but as she continues to be more alert during the day she is definitely needing a lot of hands-on attention and extra cuddles.

lots of cuddles

The biggest hurdle now is getting her back onto oral feeds.  We had worked our way back up to full-feed boluses every 3 hours through the NG tube, until she started having trouble keeping anything down and we switched back to continuous feeds to make it a little easier on her belly.  Today we will start shifting back towards bolus feeds and start again.

visit with Emmett

This has definitely been the most tiring stage of this journey so far.  Matt and I are doing 24hr shifts at the hospital, so we each get a chance to rest or catch up on things on our "days off".  There was talk of being able to go home this week, but that will all depend on how the next few days go.  Keeping our fingers crossed that the end is in sight!

Movin' on up (to the 4 East side)

It has been a busy (and tiring) few days.  Elyse was cleared to leave the PICU on Sunday, and was moved up to the "4 East" recovery wing that afternoon.  Her first few days off the narcotics went as well as we could have hoped -- she was quite dopey for the first 24 to 48 hours, but the fog slowly lifted as she continued to become more alert and focused.  

 

Her biggest withdrawal symptom over the weekend was insomnia and restlessness -- even though she was exhausted, she could not keep her eyes closed for longer than 30 seconds.  But despite not sleeping, she was quiet and did not seem to be in any distress.  The team continued to try and optimize the timing and dose of each medication, in order to keep her comfortable but not needlessly over-medicated.  Unfortunately, despite her orders being written out and transferred along with her, her Sunday evening dose of Clonidine was missed.  This resulted in an extremely long and miserable night for everyone.  We did not find out about the error until the next day, but needless to say, it will not be happening again!

can I just go home already?!

 

Elyse finally started sleeping again on Monday, and we are continuing to notice small improvements each day.  Where yesterday she was very sensitive and reactive to noise, today she has been much calmer with less of a startle.  We are figuring out what she needs and how to stay ahead of her withdrawal before the symptoms get out of control.  It is a heartbreaking thing to watch her go through, but one of us is always with her and we are doing our very best to keep her as comfortable as possible.

eight months old

(and catching up on some much-needed sleep)

 

Aside from the withdrawal, her recovery is going very well.  She ended up only needing supplemental oxygen for two days, and is back to breathing room air again.  Her PICC line and ECG probes were removed today, so the only tubes and wires left are the oxygen saturation monitor and feeding tube.  The occupational therapy team is coming to visit her tomorrow to ensure she is able to start oral feeds safely again, and there is no residual damage from the breathing tube.  We still don't have any idea how much longer she may need to stay, but at least progress is being made.

No tricks, just treats!

Halloween turned out to be a pretty magical day after all.  For starters, it felt like the whole hospital showed up in costume -- from the nurses and doctors, to volunteers and patients.  I know I certainly wasn't expecting morning rounds being presented by Snow White, a cat, and Kanye West, but it was pretty fun to see.  There were also stations set up all around the hospital for the kids to go trick-or-treating for toys and treasures.  You can tell everyone goes out of their way to make it a fun day for the kids, despite their not-so-fun circumstances.

Just another day at the office

Elyse had another great day too.  Although she has taken her time getting through the worst of this virus, now that she's on the other side of it she really seems to be raring to go home!  Her team was really impressed by how well she had tolerated the weaning of ventilation pressure and medication overnight, and decided to go ahead and extubate a day early.  She handled the procedure like a champ -- in fact, the worst part was probably peeling the tape off her face (I have a feeling we will be scrubbing that sticky residue off for a while).  Once she was settled, we had our first cuddle in over two weeks, and it was amazing!
 

Best feeling ever

 

I made it back home last night in time for some trick-or-treating with Emmett the fireman, and then it was Matt's turn for some much-needed cuddles with Elyse.  Now that she is starting to wake up, we will start staying with her around the clock again.  Thanks to the wonders of FaceTime, Emmett can still get his goodnight kisses from the hospital too.  He has certainly been a trooper through all of this, although his last request before bed is always to scroll through pictures of his baby sister.  Hopefully it won`t be much longer until we are all under the same roof again!

Happy Halloween!

cuddles with Daddy

 

Today they were also able to remove the arterial line as well as both chest tubes, which should make things more comfortable for Elyse, and certainly much easier for cuddles.  She has been becoming more alert throughout the day, but you can tell that she is still pretty dopey and often quite agitated, which could be a sign of withdrawl.  They have now switched her over fully to a non-narcotic medication, and will start to wean that one as tolerated.  Tonight I was encouraged by the fact that she was quite a lot calmer than this time yesterday, and was also able to maintain eye contact for longer periods of time.  Let`s home this trend continues and she is back to her old self in no time!

 

Whoa...that was some nap