Well last Monday morning we headed to Pittsburgh (which is 2 1/2 hours away for those of you who don't know) for her Upper GI with small bowel series. She was not allowed to eat for 4 hours before it. We actually got back there on time. So now comes the task of getting her to drink the barium. She refused so we tried a syringe which backfired completely because she threw up like 5 times. So they ended up having to put in an NG to get the barium into her. She was pretty much hysterical the whole time. And they only allow 1 parent back (not that it would have mattered much because my dad was with me and not Tom). Anyway, it ended up taking about 5 1/2 hours for the whole thing, and it sucked because she wasn't allowed to eat that whole time. Results: she has some malrotation of her small intestine and it is no where near where it is supposed to be. But they somewhat expected that because of her O and said it isn't causing any problems. YAY!
We got home around 6. I was rocking her to sleep at about 9:30 and noticed she felt hot. Temp was 102.7. She never had a temp that high so we took her to our ER. When they took it there it was 103.2. They started an IV, fluids and antibiotic, and decided to ship her to Pittsburgh. By this time it is 2 am. I went in the ambulance with her and Tom went home. So we get to Pittsburgh at 4 am. Sit in their ER until 4:30 when they take her up to the PICU. She has been in the hospital so much that anytime someone even walks in the door she starts bawling. I couldn't even sit down (I was there by myself because we decided it would be best for Tom to get some sleep before driving and to go to work). They did blood tests and x-rays, etc. We had already known that she had a trach infection since the Wed before that, but they are saying that it was the source of the fever. So I had been up for 34 hours before I got to nap for 1 hour and then back up for another 6 until she went to bed (thank goodness for Aunt Di coming to visit us so mommy could get a little rest!). The next day she was pretty much back to normal so we thought for sure she was getting discharged. They had other ideas. They were concerned about her respiratory rate. I tried to tell them that she always breathes fast, but they wouldn't listen. She was not in any obvious distress, no nasal flaring, no retractions, and her O2 was good. Anyway they kept her another night.
She got discharged Thursday morning at about 10:05 and we had an appointment with the Feeding Team downstairs at 10:10. They were very nice and the one doctor kind of agreed with us that she is small, but looks healthy and it is not affecting her development at all. They still couldn't give us a reason for the gagging. Said to try putting her on a schedule, which has never worked with her. She now has the learned behavior of spitting things back out or taking them out of her mouth because she knows she will most likely gag on it. And for a long time I made her spit stuff out because I knew she would gag. Ugh, so no real answers there.We then had a cookie swallow at 2:15. And she wasn't allowed to eat in between the 2 appts. Cookie swallow was good though and she is cleared for all types of food.
Fast forward to Thursday night when we get home. She starts hacking up a lung, breathing REALLY fast, and her oxygen is low. Called her pulmo on Friday and they thought maybe she just had a cold. Got worse on Saturday so we took her to the ER. They saw "something" at the bottom of her lungs. So we left with orders for albuterol every 4 hours and constant oxygen until she is better. She was already on an antibiotic for the trach infection.
Today her cough seems a little better. But her oxygen still sucks. If I take her off she drops into the low 80's and sometimes high 70's. And the oxygen tubing SUCKS! The poor thing keeps getting tangled in it!
Some good news: She is AMAZING with her sign language. She is up to about 60 words and is picking them up really fast. She has also started to verbalize. She says "mom" "dad" "Nana" and "hide" which is her new favorite word! She also tries to say NeeNee, Poppa, and Zeus and will try to make any sound that you ask her to. She is trying to jump and it is the funniest thing ever! And despite being sick she is still her happy little self!