Home Sweet Home!

Yes, Jadon is home.  After slightly more than a year as a patient at Sick Kids Hospital, he came home Tuesday afternoon.  We had been transitioning Jadon home over the last few days.  He came home for a sleepover Thursday and spent the day Friday.  He went back to the hospital in the evening for his antifungal IV medication.  He spent the day Saturday and Monday at home as well.  Sunday was spent at the hospital with a friend watching Jadon so that Sara and I could spend a little bit of 'us' time on Valentine's Day (the older two kids insisted we go out for lunch and leave them to care for the two siblings at home :-) )

Tuesday was the big day and he's been doing relatively well.  The transition to home was in part because the night nursing had not been arranged yet.  We have nursing care overnight to give Jadon his IV med, his continuous g-tube feeds and to keep an eye on him as he sleeps.  The first few nights have been quite interesting as we iron out some kinks and get settled into some sort of routine.  Hopefully over time things will normalize and the two of us will be able to get regular sleep.  The days are busy sorting out medications and appointments and trying to get used to having a mini-hospital room set up in our living room.

All the kids are thrilled that Jadon is home.  The siblings love playing with him and entertaining him as they are rewarded with one of his huge smiles!  Jadon is excited to be here and has recently learned every one's name and so loves to call out for whichever sibling is not around.  Jadon is scheduled to start an intensive daily rehabilitation program at Bloorview Hospital where they will focus on occupational, physio and speech therapy.  This is in addition to weekly visits to Sick Kids and our local pediatrician.  So, yes it's better but will still be very busy!  Despite the challenges, it's wonderful to be able to be together as a family once again!

An Anniversary we wish didn't have!

Well, here we are, 365 days after bringing Jadon to the hospital early morning for his first OHS (open heart surgery) to repair his Tetrology of Fallot.  He is still at Sick Kids.  He has gone through a tremendous amount.  If you had told us what the last year was going to be like, we would not have believed you, yet here we are!

In addition to everything Jadon had gone through as of Aug 11: 6 months in the hospital, this is what has happened since:

1 surgery (fundoplication and g-tube insertion)
2 cardiac arrests
4 more CCCU admissions
1 endoscopy
3+ intubations
multiple bronchoscopies
1 fundoplication dilatation
4 g-tube size changes
1 g-tube advanced to gj-tube in IGT
intussusception (bowel telescopes on itself)
gj-tube back to g-tube
1 mickey (replace g-tube with button)
2 bouts of pancreatitis
7 weeks on a replogle tube (continuous suctioning)
1 PICC line change
1 CT scan of his chest
1 MRCP (special liver/pancrease MRI)
10+ new different medications (bringing his total to over 64)
1 medication is restricted and only available through the Special Access Programme
learning to walk 3 more times
multiple more ultrasounds, x-rays, echocardiograms, EKGs

Through all this, Jadon has been absolutely amazing.  He is such a happy little guy and worms his way into the heart of all his health care practitioners.  For the last 2 months or so we have been on a general medical pediatric floor, so Jadon had a whole new set of nurses, doctors and others to charm.  It did not take long!

He is taking a little bit of food orally now

Colouring in the library at Sick Kids

I'll say it again as we have countless times... we are hoping for a homecoming very soon!

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!

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

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.

First unaided steps in over 6 months

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.

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.

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.

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!