So remember how I said that after this past surgery we would not have to do belly dressings anymore? Yeah, so much for that. The Monday after her surgery at about 3 am she woke up crying so I went to give her a bottle and saw that she was SOAKED. I thought she had peed out of her diaper, but then realized it was coming from her belly. I got her out of her crib and layed her on my bed and there was GOOP everywhere. Her incision was draining. So I called the surgeon on call at CHP and we ended up taking her to our local ER at 4 am. They did a wound culture and he said everything looked ok. There were no signs or symptoms of an infection so to just keep in covered and call her surgeon in the morning. Just our luck, her surgeon has been on vacation this week. By Tuesday evening the incision had started to pull apart and we could see Gortex underneath (same as last time, except this time it wasn't SUPPOSED to happen). By Thursday morning a spot had opened up where there was no Gortex underneath and it was just her tissue popping through (BTW, by this point I had called Children's 3 different times). So I called again and that Friday we made a semi-emergency trip to Pittsburgh. The surgeon that we saw said it looks OK and we just have to be very careful that it doesn't get infected. We have to watch the bottom part that is just her tissue to make sure no intestines are coming through. REALLY?! THAT IS JUST GREAT.
So then we saw her surgeon the next Thursday and he said everything was fine. He said it obviously wasn't the most ideal situation because we didn't want it to come back open, but that it was ok. We just have to dress it again. We are putting wound gel on it (the same stuff we used at the very beginning) and the open spots are starting to grow some new skin! YAY!
2 weeks ago we had to do a stool sample because we thought she had some blood in there. We never heard back from them so apparently it wasn't blood. We are guessing that it was her antibiotic that was making it a funny color.
This past Tuesday we had to take her to get another trach culture. She had been coughing alot. And with coughing always comes more puking. I didn't get the results (I forgot to call today!) but they put her back on the Ciprodex drops in her trach and Omnicef (antibiotic).
Our next appointments aren't until June. We have NO appointments in May!!! We see her surgeon and Cardiology on June 2nd and then we will be staying over because she has a bronchoscopy which is done in the OR on June 3rd. At her last appointment with her surgeon he brought up the idea of giving her a g-tube. Definitely not what we wanted to hear. He said if she could have gotten one before, that he would have been pushing for it a long time ago. I agree that an 18 month old should not weigh 14 lbs. 14.5 oz (which is what she weighed yesterday YAY!). But all of her therapists agree that her weight and eating (or lack of) is not affecting her development. She is starting to walk!!!! She took 35 steps the other day and it starting to let go of things to walk to me. She is also signing like crazy. She has about 15 signs. She started saying please and thank you, mommy, daddy, Fiona, Zeus, swing, sleep, and lots more! She saw herself in the mirror the other day and signed Fiona! She loves being outside and tells me when she wants to swing. And last night she told me that she wanted to go to sleep.
Hopefully I can update more than I have been lately :)