Disappointing Doctor's Visit Today

Zoe cracking herself up in hospital. I love that smile!

Feeding Issues

We went back to the pediatrician today for her to listen to Zoe's lungs and assess the feeding issues. When we were discharged last Thursday, we went home with the NG feeding tube in place. Zoe pulled it out on Saturday so we decided to see how she would feed without the tube. Saturday and Sunday she did not eat as much as she usually does, but she did well enough to stay hydrated and keep her diapers wet. Today Zoe actually did awesome with feeding. So I am hoping that she will continue to eat lots and make up for the weight she lost. At the doctor's today, Zoe weighed 7.9kg (which is still .4 under what she weighed two weeks ago). Since Zoe is eating well today, we will continue without the tube and see how she does.

Lungs Sounding Worse

The biggest issue that the doctor was concerned about is that Zoe's lungs actually sound worse than they did last week. They sound "more wet, wheezy, and crackly." I can actually hear a bit of a wheeze/whistle when Zoe breathes. The doctor wants us to return to her office on Thursday so she can have another listen. In the mean time she is going to look into inhalers for Zoe. The issue with the inhalers is that they will speed up her heart rate since they are a steroid and the doctor is not sure if this will be too much for her heart. So if Zoe does need to start inhalers we may need to go back into the hospital to be monitored while the medication is started.

As you can imagine this was very frustrating. I was hoping to hear that Zoe was improving and we could take a break from so many doctor visits. Our doctor is usually very positive so it worries me to see her so concerned. The good news is that Zoe is doing well at the moment and is not in respiratory distress. We will just have to keep hoping that she will be able to get over this by herself without further medical intervention.

One last kicker- needing a special needs car seat

As if this wasn't a down enough visit, I asked about car seats and got an answer I was not expecting. For now, Zoe has been in the rear facing infant car seat that can accommodate a child up to 22 pounds. Zoe is not even 18 pounds so she still fits it. However, Zoe is getting so tall now that her head is starting to reach the top of the seat. I asked if we should start looking at getting a front facing car seat but the doctor is concerned that Zoe does not have the muscle tone to be front facing. In an accident, Zoe would not be able to protect herself during impact. So now we have to look into getting a rear facing seat that can accommodate a longer child. She recommended checking convertible car seats and see if she can fit into one of those. If not, we will have to look into and order a special needs car seat. We know a couple of 1P36 kids who use these. I was just disappointed to hear that Zoe is not ready yet to just move into the next step car seat. Oh well, some day right?

Summary of Hospital Visit

I am not going to detail everything here but basically we ended up in hospital because the first med did not get rid of her fever and the second med gave her horrible diarrhea with blood in it. Also, she started having a lot of pain with her NG tube feedings. The third med she was started on in hospital ended up giving her a terrible rash and she ended up thrashing about for over ten hours and that was with benedryl on board. Zoe tolerated the fourth med so we were released to continue the med and tube feedings at home. We are glad it was a short visit but it was not an easy one. Zoe had a lot of pain because of the diarrhea, rash, and possibly chest pain with the pneumonia. It was really hard to see her in so much pain and to have her sign "mom" or "dad" and look at us like we should fix it. But she is feeling much better now. She has big smiles and is very playful again. So hopefully we will figure out this whole lung thing and she will keep improving.

Improving Communication Skills

Throughout all of this, I have been very impressed by Zoe's communication skills. Her signing has gotten to the point where she was able to tell us that her stomach hurt her when she had the diarrhea. Also, yesterday she was signing that she wanted the tube put back in her nose because she was tired of eating with her mouth. It was great to see her figure out what the tube is for and that it is easier than eating with her mouth. However, we do not want to go down the permanent tube route so we are pushing her with her feeds again. It is really great to see that language comprehension and expression coming together for her.