Happy 4th birthday! What a difference a year makes!

It has been a long while since the last post.  Jadon has been mostly home since being discharged in February (with several fainting/near fainting spells, two 911 calls and three short hospital stays) but the last few months have been much better.  He is progressing well, gaining strength, stamina, vocabulary and mischief!

Today Jadon turned 4!  We had tears in our eyes when we remembered his last birthday.  Of all the children, only Rykauna joined Sara and I at Sick Kids to celebrate Jadon's 3rd birthday as he was lying in bed in the ICU once again only 3 days after one of his cardiac arrests!  The other kids just could not bear the thought of seeing Jadon in the ICU yet again.

Jadon sedated in ICU on his 3rd birthday - decorations thanks to big sister Rykauna

Today, everyone was all smiles.  Jadon knew his birthday was today and this morning he 'made' himself a cake out of kinetic sand and put on a candle.

This evening his eyes were full of sparkles as we sang happy birthday to him and he got to open a few gifts.

Here's to many more birthdays with this wonderful bundle of joys and smiles!

Jadon was featured in a video presented at a cardiac family conference!

Happy 7th Birthday Li Lin!

Our dear Li Lin turned 7 today.  Hard to believe she is getting so big! Her enthusiasm and joy of life are contagious and there is never a dull moment with her around!

Over the last year, birthdays have taken a pretty big back seat given our preoccupation with Jadon in the hospital.  Li Lin was excited to be able to have a party this year with some of her friends.  We had Jasmine (her current favourite princess) drop in to sing some songs, do dress-up and play games with the party girls.  Li Lin had a great time!

Li Lin, Jadon and 

Today, on her birthday, we picked up a beautiful cake that had been baked for her through "Icing Smiles", a charity that coordinates volunteers that bake amazing cakes for children and siblings affected by long-term illnesses and hospital stays.  This amazing baker even provided some sparklers for candles.

Picking up her cake with... you guessed it... Jasmine Theme!

Sharing the cake with our church Bible study group

A little Rascal, and we are loving it!

Yesterday marked 3 weeks of Jadon being home!  We are so thrilled and thankful that he has been able to be at home and we have been able to spend time being a 'normal' family once again!  Our new normal however is quite different than what we've had before.

While Jadon is out of the hospital, a lot of the hospital is here at home with him!  He is on continuous oxygen and nearly continuous feeds.  His SATs are monitored overnight and he gets his antifungal medication through IV nightly.  He has 20 medication doses daily.  His PICC caps and dressings must be changed weekly using sterile procedures.  He has daily appointments.  He attends the SODR (Specialized Orthopdic and Developmental Rehabilitation)  program at Bloorview Children's Rehab Hospital. He has occupational, physio and speech therapy.  This is a daily program with breaks for Sick Kids or local Pediatrician appointments.  These daily outings involve packing the oxygen tank, the feed bag and pump, the 'emergency safety bag' (contains suction supplies and machine, oxygen saturation monitor and respiratory emergency supplies, feeding tube emergency dislodgement supplies, and PICC line emergency supplies), as well as a diaper bag and oh yeah, bringing Jadon along also!  We have night nursing care to monitor him overnight from 11pm - 7am.  The nurse administers the IV med, maintains his night feedings, and monitors his overall health and need for suctioning.  We have had to help train the nurses but things are going more smoothly now.  It is an absolute Godsend having nighttime nursing support because this means that we usually get a reasonably solid night's sleep. With full days, uninterrupted sleep is so helpful.

8 o'clock morning meds!

Jadon pointing out a 'BIG' truck on one of the many trips to an appointment

Despite all of the challenges, we LOVE LOVE LOVE all being home together.  It is wonderful to see the children all playing together and to see the leaps and bounds in Jadon's development as he is continuously showered in love!  He is a real rascal but we love to see the spirit and energy.

The two Littles!

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.