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.