Sunday, 24 January 2016

A VERY trying week!

So, a while back I bought a whole pile of 'Jenga' blocks from Dollarama.  The kids use them as bulidnig blocks to build towers, bridges, houses etc...  The last little while the kids have been using them as dominoes to create different paths that they then topple down.  This week I was reminded of that as Jadon ran into multiple complications.

On Sunday evening Jadon was complaining about a sore side.  Bloodwork and an ultrasound on Monday confirmed that it was indeed another pancreatitis flare-up.  One of the symptoms of pancreatitis is nausea.  Jadon can not vomit because of his fundoplication but he can retch.  The excessive retching has caused a tear at his g-tube site which is causing discomfort and some leaking.

The treatment for pancreatitis is stopping feeds and overhydrating.  On Tuesday they stopped Jadon's feeds and started giving him dextrose and saline through IV.  Of course, because they have been struggling with Jadon's fluid excess, overhydrating can cause issues.  Aware of this, as a precaution the team decided to give Jadon a little less than the required fluids.  What ended up happening is that Jadon's sodium got very elevated (dehydrating).  This can cause neurological issues.  The treatment for this is... overhydrating (but slowly to bring down the sodium at a controlled rate).  So Jadon was taken off his diuretics and his sodium was coming down nicely, but his fluid balance was going very positive.  They had to increase his oxygen and he became quite lethargic.  The staff was drawing blood for electrolytes every 4 hours and changing the saline concentrations they were giving Jadon to try and maintain a good balance.

Yesterday evening Jadon sat up for about 10 minutes and smiled a little.  He woke up this morning much more himself with a little grin and played with water for a couple of hours.  The Critical Care Response Team which has been following him over the last week during his setbacks has told us today that they don't need to follow him anymore at this time given his improvement.  While he still is not completely himself, he is feeling quite a bit better and seems to have turned the corner yet again.  Hopefully he'll be up and walking again within the next several days.  This week has aged Sara and I another 6 months or so!

Tuesday, 19 January 2016

So close to being home... but not yet!

Jadon was supposed to come home today.  He has been doing really well.  He has improved his walking and his stamina.  He even came home on Saturday for about 6 hours on a day pass and we had a great time!  The plan was for a Tuesday discharge as Monday was to be used to make sure everything was lined up for a smooth transition.
Jadon hanging at home on Saturday with his two brothers
But, Jadon's story is never in a straight line!  On Sunday evening he seemed to be favouring his side.  By Monday the medical staff was concerned enough that bloodwork and an ultrasound were done and Jadon was diagnosed with another bout of pancreatitis.  So, for now he is off feeds and on IV fluids for calories.  The GI doc thinks that his pancreas may have sustained an injury during his major bout of pancreatitis in November, putting him at a high risk for new 'attacks'.  He was feeling pretty well despite the tenderness, but this morning he also woke up with a cold and this evening had a fever and was feeling miserable.

So, obviously Jadon's homecoming is delayed once again until they sort out this latest setback.  We are all pretty disappointed he didn't make it home today but are thankful this was caught before he did make it here.  Once again we are reminded to live life 'day by day'.
My lovely wife and superman kid... photo taken New Year's eve


Friday, 8 January 2016

More "steps" in the right direction!

They say a picture is worth a thousand words.  I wonder what two videos are worth?  From Jadon's busy day today.
video
First unaided steps in over 6 months

video
First bites of food in over 4 months

It is absolutely wonderful and thrilling to see the amazing progress that this little guy has made, particularly over the last three weeks.  He is amazing!

As far as moving forward is concerned, the ID (infectious diseases) team decided that they want Jadon to remain on the caspofungin (antifungal IV medication) for at least another 3 months.  They really, really want to make sure that the fungal infection is out of his sternum (what little remains of it after his continued infection over the summer!)  The remaining issue right now is his fluid balance and need for significant diuretics.  Changes have been made in the hopes that he can get off the IV diuretics shortly.

God is good.

Friday, 25 December 2015

I'll be Home for Christmas

Grandmaman optimistically bought Jason these pyjamas for Christmas and today, just for the day, it came true!
We were off to an early start and met Santa on our way out the door.  Sick Kids is amazing... we got gifts for our kids, activities throughout the week, a Christmas dinner and much more...
Greeting Santa on our Way Home!
Jadon sporting his toque given to him by a Ronald McDonald Room worker
The kids absolutely loved having Jadon home for the day.  The older two ran outside to greet him in their bare feet.  When I asked them what they were doing, they cried "Dad, this is a once in a year event!"
The cousins
Lilin took a picture of her favourite ornament... one celebrating her adoption.
video
It was so nice to see Jadon walking about and playing around!
Taking a nap after the festivities!
We were able to enjoy the day with family and friends, have a good turkey dinner put on by Sara's parents at our home, and some play time.  An exhausted Jadon is now sleeping peacefully in his room back at Sick Kids.

Sunday, 13 December 2015

More steps in the right direction

This has been another eventful week.  It has been determined by the cardiac team that the changes seen on the last echocardiogram indicate that the improvement in Jadon's heart function is substantial and that his heart is not really a big issue anymore.  It seems likely that the cardiac artery bypass graft (CABG) surgery performed in June has had some effects.  We were told it may take up to 6 months to show improvement and here we are!  His function has moved from moderate/severe dysfunction to only mild dysfunction.  As a result, late this past week he was transferred out of the Cardiac critical care unit (CCCU) and into the Pediatric intensive care unit (PICU).
The three bros sharing smiles!
On Friday they removed his replogle (the tube providing constant suction) to see how he would be able to manage his secretions, given he has been on the prokinetic drug for 2 weeks now.  He is still being suctioned every 3 hours but is doing well.  We are hoping and praying that he will start to be able to fully manage his saliva on his own.  The plan is to transfer him to the general pediatric floor as they continue to manage this.  He is in really good spirits and has been pulling himself up in his bed and even taking a few steps - something he really hasn't had the strength and energy to do for several months.
Standing in his crib!
We are once again cautiously optimistic that he may finally be on the mend.
Mischief!

Sunday, 6 December 2015

Heading in the right direction once again!

Well it has been another eventful few weeks.  Jason has been in the CCCU for two weeks.  He has gone through stages of extreme lethargy, to discomfort to agitation.  He has had days and nights of almost constant sleeping to days and nights with hardly any sleep. He's gone through another round of multiple medications.  He has been NPO'ed (no food through mouth, or for him, gtube), and had feeds started once again.  He has gone through intessusception and pancreatitis.
Yet here he is once again smiling.  The last few days have been pretty good.  We've seen the rascally Jadon come out again.  He's squirted several staff members with water from syringe during rounds.  He's taken to playing on a mattress on the floor, even napping there at times, prompting the head of the ICU to take his picture and send it to the CEO as 'proof' that they need more critical care bed space at Sick Kid's! ;-)
We are currently waiting to see how the new prokinetic drug they started about a week ago is working to increase his esophagus motility.   If this works it would be great.  If not we are likely looking at another surgery to undo the fundoplication.  We are desperately praying that this works and we can continue heading in the right direction.

Wednesday, 25 November 2015

Emotional yo-yo!



Sunday night Jadon was admitted to the cardiac critical care unit because of severe lethargy and low blood pressure.  On Monday morning after a blood transfusion and some time on a blood presser, he was doing much better.  He was followed up with several ultrasounds and x-rays and since he was doing so well, was moved up to the cardiac floor early Tuesday afternoon.  It was nice to have such a short stay in the CCCU.  

Our relief however was very short lived.  In the evening, Jadon's blood pressure was extremely low once again.  Less than 8 hours after leaving, Jadon was once again admitted into the CCCU.  This time he was put onto 2 different blood pressers and ended up on a morphine infusion due to his obvious pain and discomfort.  He has had several other diagnostic tests to help figure out what the issue is.  The telescoping of his intestine has corrected iteslf, but tonight he sits in the CCCU, lethargic and uncomfortable.  The medical team is not exactly sure as to the source of the issues, but are currently querying pancreatitis, given his pancreas enzymes are elevated.

Through this all, Jadon has been able to remain on room air, which is encouraging.  One of the tests was an echo-cardiogram (heart ultrasound).  It shows that there may be some small improvement in heart function through this all.  We will take whatever positives we can during this difficult past 2 weeks.

On a positive note, Jadon is featured on some huge monitors around the hospital as part of an advertisement. The woman in the picture is was awarded a "Smile" award and asked for Jadon to be in the photo with her. To bad he had just woken up and did not smile. ( The pic was taken in the summer when he was more fluid overloaded)