03/07/2008 Family Conference

We had another family conference this morning. Highlights:

• Monday, they are going to insert a different trach tube. Aidan needs a longer tube because of his stature (he's barrel chested). They've ordered several different sizes and will try to get the best fit. They will be doing this under general anesthesia again and it will require that he is monitored for another week after the procedure. This also means another week before we can hold him.
  
• Aidan has developed a sinus infections because of all the tubes and stuff and they are starting him on an antibiotic today to deal with that.
• Dr. Corbier would like to get another MRI next week along with an MRS. He reiterated the fact that what damage we are seeing in the brain (the hypoxia) has still only shown up in the diffusion MRI scan. For those who are not aware, a diffusion MRI creates its images by measuring the amount of oxygen in the water molecules within the brain. The MRS will give them a better idea of what the prognosis is. Dr. Corbier did say that the areas that are hypoxic are reversible. The next MRI will definitely give us a much better idea of what we're looking at.
  
• Some new drugs are being added to the fray (Dantrolene and IV Clonidene along with the Clonidene patch). It will be another 72 hours or so for them to really access the effectiveness of the combination of medication. This is really all trial and error.
  
• Aidan has started receiving feedings through his G-tube (they will also be able to start giving him some of his long-term medications through the g-tube as well)
  
• Charlotte Rehab has not been cooperative. They said they would only take him for 2 weeks, and that would pretty much be to show us how to care for him. Needless to say, Dr. Black was livid! He has suggested we start concentrating on rehab locations out of state again. Russell had got a call from the Atlanta rehab center and he found out that they have scholarships available. The social worker is also going to look into other options within NC, the main one being Pitt County Memorial Hospital in Greenville, NC.
  
• Dr. Black also wants to try to start weaning Aidan off of the sedatives (fentanyl, versed, etc) again, because he will not be able to go to a rehab facility on these medications.
  
• We are looking at probably another 10 days to 2 weeks here in the hospital, at least. This is just taking a lot longer than any of us anticipated. Had Aidan not started having these sympathetic storms, everything would be a lot different.
  

I (Erin) just wanted to add that everyone here at the hospital has been wonderful. The nursing staff, the respiratory staff, the doctors, they've all been doing a great job. I know that this is stressful on them as well. I can tell that they all really care about Aidan, as I'm sure they do with all of their patients. This whole thing is just indescribable... the range of emotions that I feel. I go from guilt, to anger, to just sheer depression all in the same day, several times a day. I don't know that I'll ever understand why, or how- I just have to pray and trust that he's going to get better. It is very frustrating, though when a rehab facility that deals with brain injury doesn't think that your child is treatable.

On another note, Russell had another job interview this morning. He could possibly know something today next week (I called the recruiter and they informed me that it will likely be Monday that I find out something -- Russell). As for the interview that he had last week, it could be next week before he hears anything.

For now, this is what is going on. Aidan is currently calm and the symptoms of the storming episodes are under control. His heart rate is around 110 or so and his breathing is good. It's a little fast because of the trach (which is why they are changing it). He seems to be resting comfortably right now. We're just continuing to pray that these storms disappear and in the meantime we pray that the doctors have found the right combination of medications to control the symptoms of the storms.