Juliana has been very stable over the last week. She had her first eye exam since the surgery and her condition remains the same. We won't actually see any real results for about 3 weeks when the scar tissue starts to form. It's really good that there has been no change as her condition was progressing very quickly. She is scheduled for another check up today or tomorrow and the retina specialist will continue to follow up with her over the next two months.
Now back to her respiratory status. Juliana had to be re- intubated for her eye surgery and the intubatation was very "traumatic" according to the doctors. It seems that her air way is a bit swollen which made intubation very difficult. She still needs to have at least one more surgery where the surgeons will reconnect her intestines and reverse the ostomy. This won't happen for at least another 5 weeks. So the concern is that she will need to be re-intubated for that procedure and may also have some trouble if she is extubated now and then re-intubate later for that surgery. It's not ideal to leave her intubated until that time comes. So the plan is to start her on a short course of steroids to bring down any superficial swelling in her airway and extubate her tomorrow in the O.R. where the ENT specialist will be able to thoroughly exam her airway. If he finds that her airway is okay and shows no sign of Subglottic Stenosis (narrowing of the airway) then she will be extubated. If he feels that she is showing signs of Subglottic Stenosis then she will be re-intubated right there and a tracheotomy will be scheduled. The trach will actually give her more time to heal with out having to be intubated. She will have use of her mouth again and will still be able to get the ventilator support she needs.
Juliana is back on feeds again and is getting 1/2cc (like 1/2tsp) every hour continuous. Now I know this is going to sound gross but if it works it works. The plan is to take whatever output she gets in her colostomy bag and re feed it through a feeding tube placed in her second ostomy. This is offering the chance for her to better absorb the nutrition she needs from her feeds. She will still remain on her iv fluids because at this point it's really hard to measure what she is actually absorbing from her feeds and also because she is receiving such a small amount. Hope fully this will work for her till the surgeons feel she is ready to be "put back together".
Thank you as always for your prayers. Juliana is doing very well compared to where we were 3 months ago. She has gained quite a bit of weight and is now 1600 grams or 3lb 8 oz. I will try to post again in a couple of days, but as you know my life is very busy right now.