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!