I've been trying to get an update out but have obviously failed to do so until now. Things have changed quite a bit over the last couple of days. The Dr's originally advised they did not see anything abnormal with the Upper and lower GI's completed, therefore they were perplexed as to what was going on and started to explore other possible diseases, one of which being a colon biopsy to test for a nerve disorder.
The Dr's advised last Friday they were going to let Jaylie rest through the weekend and do a colon biopsy first thing Monday morning (today). We got a call from the Dr's early this afternoon advising they decided not to do the colon biopsy after additional review of the xray's and GI tests done. The Dr's advised they were seeing something in the xray's which may be causing the swelling and bloating of Jaylie's stomach and would like to do another Upper GI before looking into any other possibilities. We agreed to another Upper GI test which was completed this afternoon. The results from the Upper GI show there is a small loop of upper intestine which is twisted 180 degrees. This intestinal twist is reducing the flow through Jaylie's bowel. I don't remember if I have mentioned it or not but Jaylie has had an descended (swollen) stomach pretty much from birth. The Dr's and nurses advised Jaylie's stomach being descended was a common problem premature babies experience, and can be caused by a myriad of different issues, most of which premature babies can just grow out. With today's findings, (In my opinion) the most likely cause of Jaylie's stomach being descended (swollen) this whole time is due to one of Jaylie's intestine loops being partly twisted causing a partial blockage. This blockage is still allowing stuff to pass through, but is keeping from flowing through as fast as it should, which is cause a blockage, which is causing swelling, which then causes breathing problems and-so-on-and-so-forth. This partial intestinal twist is called Intestinal Malrotation. You can read about Intestinal Malrotation HERE.
Based upon today's findings, the Pediatric surgeon has suggested exploratory surgery to determine how much, if any, damage has been done to the intestine due to the partial twist. The exploratory surgery finding will range from no intestinal damage to damaged intestinal section which would have to be surgically removed.
If during the exploratory surgery the surgeon finds no damage to the intestinal track, the surgeon will untwist the bowel then stitch Jaylie up. The recovery time for this option would be 3-4 days -- this would be the best case scenario.
On the flip-side, if the surgeon's find damage to the intestinal track sever enough that it cannot be repaired, the procedure is to remove the section of track that is damaged. If a section of intestinal track has to be removed, the Dr's will assess as to whether the now disconnected intestinal track can be immediately reconnected or if the track needs time to heal before being reconnected. If (yes this is A LOT of if's...) the Dr's decided to leave the intestinal track disconnected to allow for healing, the Dr's will route the two parts of the intestinal track into a bag outside of the stomach. The recovery time for this scenario could be 8 weeks or longer.
To summarize, based upon the surgeon's finds tomorrow, Jaylie's recovery time could be any where from a couple of days to a couple of months.
As you can imagine, that last 10 days or so have been difficult to deal with. Kristina has had a really tough time because she hasn't been able to hold Jaylie because Jaylie is back on the ventilator. The Dr's advised us early on there would be ups and downs and this is definitely a down.
We are relieved to be on a path to treating this problem which has been plaguing Jaylie for a while but also apprehensive of what is to come.
We will make sure to keep you up to date as to how the surgery goes tomorrow.
As always, Thank you SO much for your prayers and support! We really appreciate it!
Nathan, Kristina and Jaylie
Here are a couple of pics from this week: