It has been a rough several days for the Bauer household. Dallas has not been himself and it's definitely taking its toll. It started last Thursday when he started refusing to wear his cochlear implant device. He had been doing really well with it and hardly ever pulled it off on his own, prior to this day. I kept trying to put it back on him and he got more and more mad, so we finally gave up. Friday and into the weekend were the same story, he refused to wear it. He was also not sleeping well at night, which again, has always been a strong suit for him. He wakes up screaming and then thinks it's time to be up for the day around 4am. By Sunday morning, he was really not looking good and started throwing up around 9am. After the vomit started looking green, we became concerned that this could have something to do with his recent surgery, so we took him into the ER. They found no issues with his stomach other than it was really backed up with stool. We were back home Sunday afternoon, and Dallas has been back to eating and drinking fine. On Monday, we headed up to the U of M to try and figure out why he refuses to wear his device. They didn't have any solid answer and could only guess that he started to not feel well, so he removed anything that irritated him further. They decided to reprogram the device back to a much lower volume, to try and get him back to wearing it. Since then, he is doing OK with it. Still pulls it off quite a bit, but not screaming when you put it back on. It's all very frustrating to take these steps back. On top of it, he is still not sleeping well at night and very crabby most of the day. I am really hoping this is all related to teeth...it's hard not let your mind drift to more serious explanations when it comes to Dallas's history. I have decided to give him until Thursday to start making some improvements and if there is no change, we need to get him in and find out if there is something more going on.

We did see the immunologist last Thursday morning and the conclusion was that they need more lab work. Very unfortunate that this determination couldn't have been made prior to his surgery, so that the labs could have been drawn at that time. We know they can't just draw labs on Dallas in the clinic as they have never been successful in the past. It's no different than trying to start an IV on him. So now they are working on setting up a time for him to come in and have some sedation along with ultrasound, and their "best" vein finder, to get the labs they need.

Video below was catching something that actually amused Dallas recently!

http://youtu.be/ALhm8lvg79o

HOME SWEET HOME

Today was a good day. I do not feel so beaten. I do realize I may have made some assumptions or misjudgment in my sleep deprived state. Dallas's pediatrician was paged today and stopped by to talk about the situation. She explained the significant risks of Dallas having a port while also having a cochlear implant, plus a potential immune system deficiency. I was also informed that Dallas may be able to get treatment for his immune system through shots versus blood transfusions. We did discuss the separate issue of him simply being a ridiculous IV start as well, and she did empathize and understand the pure awfulness of the ordeal we just went through and have already been through many times. She just said we really need to think about this and weigh the risks and benefits. I expressed my concern about the immunology appointment now being in January, and she said she would help get that moved up to sometime in the next week or so. Sigh. This conversation changed my perspective on the entire hospital stay. This morning I was not looking doctors in the eyes...just nodding and not asking questions. I felt so down and upset. Now I feel a lot better, probably because I am home too, but everything made more sense upon leaving today.

Big thanks to the staff at Children's. Dallas is home, happy, and healthy.