Here is a picture of Jadalyn in sunglasses taken by her nurse Lidia at her
Pediatrician appointment today. Doesn't she look adorable. :) She came
home from CHLA last Sunday. They kept her for a week + 1 day and ruled
out any shunt issues on day 1. No infections either, yeah! We were on the
5th floor this time because the 6th Floor was full to capacity so we had a
new group of people to get used to. Also, I was dealing with the Nurse
Practioner for the Gastro-Surgeons as well as the House Pediatricians. There
were about four of them during the one week. Lots of people, nurses, etc. The people on
the 5th floor are super nice. We ended up in a room with three other kids, not
so fun... not too quiet, but what can you do. The hospital is just full, full, full, so
we couldn't move to another room. We did ask every day though! Nana stayed
during the day and I stayed during the night and George relieved me for some
time on Friday and Saturday. Jadalyn had three I.V.'s all together. The first one
failed right away, the second lasted a few days and the third one lasted about a
day. By that time she was back on full feeds and so she didn't need an I.V. anymore.
Yeah! They figured the problem (gagging, trying to throw up, turning blue) was reflux
related but they weren't sure how to fix it. They went back and forth with the surgeons
and it was so odd for me not to speak with them directly but instead to either a Nurse
Practioner or to the Pediatricians. I felt very out of the loop. In the end they decided to
vent her J-G tube and found out that formula was going back into her stomach and so
they did a dye study to see if the J-G was still working. Nope! So they had to replace
it AGAIN (this is the 3rd time). And guess what, no more formula in the vent bag. Yeah
again! They increased all of her reflux medications as well. Everyone was totally against
surgery (there was a possibility of a Nissen Surgery - wrapping part of the stomach around
the esophogus to keep secretions/food from coming back up / or putting a separate G tube
and J tube) The nurse practitioner kept saying, do you WANT surgery, uh no.... I don't, I just
want to do what is best for my little babuska... I didn't care for her too much. Anyways... I felt
a bit out of my element with the new team but tried to keep it together and be professional as
always. The professional hospital mom that is! So Jadalyn is home and she is doing better
and everything is working the way it should. So keep your prayers coming. Thank you for your
love and support.
Love,
Liz, George and Baby Jadalyn (17 months strong!!!!!)
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