Jaylie - Day 74 - week 38

YAY! This week is almost over! Praise the Lord! ForReal!

Jaylie is recovering well from her exploratory surgery this week. She's progressing nicely. The Dr's are planning to start feeding Jaylie possibly today based upon her recovery.

There was a scary this week during Jaylie's recovery when Jaylie started shaking and not stopping. The Dr's ordered anti-seizure medication right away. As soon as the Dr ordered the medication Jaylie stopped shaking. Because of this shaking event, the Dr's ordered a round of test to look at Jaylie's brain to check to see if the shaking was seizure related or if there was any other brain issues going on. The first test was an EKG where the Dr's found brain activity that if continued for longer than 10 seconds would be considered seizure activity but this activity the Dr's were seeing only lasted for 3 seconds at a time. Based upon the EKG test results, the Dr's decided to order an MRI.

So, I'm guessing you're wanting to know where we stand on all the tests and what the Dr's are thinking eh? You're in luck, I have then answers :).

I asked the Dr's this week what the short term and long term plan for Jaylie was and were we sat in regards to the surgery, tests and biopsy's completed this week. The Dr's advised all the tests came back negative for any disease or sickness (good news). The Dr advised they were planning to take Jaylie off the ventilator and start feeding withing the next day or so as long as they could get the MRI scheduled and completed. The Dr's advised to complete the MRI they needed to keep Jaylie on the ventilator and would most-likely have to give Jaylie a small sedative during the MRI. The Dr's then advised the rest of the details around Jaylie care were being determined by the pediatric surgeon.

I was able to talk to the pediatric surgeon to gain perspective and what the Dr's were thinking around Jaylie's condition, what their plan was to treat the condition and what the plan was going forward. The Dr's advised the condition they believe Jaylie has is called 'Sudo Bowel Blockage' meaning, her lower bowel swells up and acts like it's blocked but the bowel is not blocked. The surgeon advised the current course of action is to use the upper intestine to grown Jaylie to around double her current weight (1500 grams), then perform some tests on her lower bowel to see if the stoma can be reversed and the lower bowel reengaged for use again. The Dr's and I discussed a lot of gory details around how they will go about testing the lower bowel for use of which I will spare you :).

There are a lot of scenario's the Dr's and I discussed as to what could happen (with Jaylie intestinal issues), ultimately the Dr's are not sure what is going to happen but believe Jaylie is in the larger percentile for all of these issues to work themselves - though there is always the possibility the challenges Jaylie is currently facing could turn into life long issues. I personally believe and have faith Jayile will make a FULL recovery!

This week has been a challenging week to say the least.

Jaylie is recovering well and growing. Jaylie weights 1729 gram = 3lbs 13oz now.

As always, we truly appreciate your prayer and support! Thank you SO much!

Nathan, Kristina & Jaylie