SOOO FRUSTRATED!!

This morning Karl and I headed to St. Joe's for Carters second swallow study. The neonatologist had spoken with us the day before and said that he consulted with an ENT (ear, nose, throat specialist) at UMC, and that the doctor thought that Carter had a specific disease, and they would be able to look for it during the swallow study. They performed the study, and diagonised Carter with Cricopharyngeal achalsia. It is a very rare disease that causes difficulty in swallowing, food to come up the nasal passage, reflux, and the sphincter (muscle in the throat) to stay closed. It matches Carters symptoms exactly. The great news is that the treatment is a simple balloon dilation. They stick a tube down his throat , and slip it inside the muscle to force it to stay open, and it has a high success rate, and is minimally invasive. So the neonatologist said that we needed to be transfered to UMC, because the pediatric surgeon, and the ENT were both over at that hospital. So Carter was transferred by ambulance this morning. Here he is inside his transport unit. He was happy as a peach during the ride...they strapped him down so it was like a super swaddle. You can see his little head inside the unit.

UMC is....different from St. Joe's. We really loved St. Joseph's. It was like the old sitcom Cheers "Everybody know's your name." We had one neonatologist who saw him everyday, one occupational therapist, and we got know the majority of the nurses. Everybody knew who Carter was..what his problem was...they knew the sound that he makes when he is choking, they knew when he needed to have this throat suctioned, etc. One night we came in and Carter wasn't in his room. Of course I started to panic and asked the closest nurse where Carter Adams was. She swirled around in her chair, and I saw she was holding a baby and said "He's right here. He wanted to be held for the past 2 hours." When we left this morning the occupational therapist gave us her home phone number, and through tears said "Please keep us updated". It was just very personal. UMC is just differnet. They have the specialists, they have the special test equipment, they have the surgery capabilities. So it is where we need to be, I know that. And I'm sure after a couple weeks it will start to feel more comfortable. The nurses will start to know who he is, and his personality. But, the NICU its just one big room, with about a dozen other babies. Then there was a doctor, and a resident, and some other doctor, and a couple different kinds of nurses. So it was just all a little overwhelming. One of the great things was that his nurse today is my visiting teacher! So that was really nice, to know someone, and to feel instantly comfortable with that. I think if she hadn't been there, I would have lost it. So now the REALLY frustrating part of the story. While we were gone, one of the doctors ordered that he be fed by a bottle for the next two feedings. WHAT?!! We have sat in the NICU for two weeks. We have tried bottles. We have tried breastfeeding. He chokes. We have done two swallow studies, that shows that he chokes. Maybe I'm just paranoid, but the doctor at St. Josephs said the number one concern at this point is pnemonia, and that we need to avoid him aspirating on anything. So we went in tonight, and I asked the nurse why on earth they would give him a bottle, and she didn't really know, but added that it "SOO did not go well." Well, of course not! We asked what the ENT specialist said, and she didn't know either. So she went and found a resident to come talk to us. The resident said that they can't take anyone elses word on the fact that he chokes. They have to see it. They can't believe our word, or the neonatologist, or the occupation therapist, or the swallow studies. The have to risk pnemonia, just to see what happens. I didn't love that answer. Now the kicker, she said that the ENT specialist and the radiologist didn't agree with the diagnosis that St. Joe's gave us. But the ENT specialist is the one that told the neonatologist at St. Joesph's what the problem was! She went on to say that the radiologist didn't like the swallow study video, and they just like to do it a certain way, and that they would have to repeat the swallow study. And that they think its a problem with his NOSE. His nose??? We watched the swallow study video. The problem is not his nose. The food only comes out his nose, when it backs up in his throat because that muscle is closed. So she then spent the next 10 minutes, telling us how sucky St. Joe's was. She then informed us that both the ENT specialist, and the swallow study person were both gone until at least Monday. So we just sit for 3 more days, knowing nothing and doing nothing. And that we would "start over" on Monday. No, I don't want to start over. We have already been here for 2 weeks. Also, we found out that the person we talked to on the phone two days ago was wrong about siblings coming to visit. They are allowed to see him through a window, but that's it. So yet again Kyra is disappointed. I'm just overwhelmingly disappointed. All of the elation from this moring, of knowing the problem, and having a treatment plan, that included him coming home in the next couple weeks is gone. And I feel that not only are we starting over, but that we are going backwards. I know that we need to be at UMC. I know that they are the specialists. I know that they will take good care of Carter. I know eventually it will feel more personal to us. That we will feel like they really care about Carter, and that he isn't just a name, and this will just be a distant memory.....I just wish it would become a memory sooner, rather than later.