Too much hope.....

I am beginning to learn that your first visit with a new specialist is really just a get to know you and just to report some issues. They don't always want to really know her history if it doesn't pertain directly to what we are there for today. I have to remember they have a certain amount of time allotted for our appt. and if it goes too long they just conclude with what they just heard and you leave feeling like maybe you are in the same boat that you came in on.
First let me say I am thankful that we were able to get an appt. quickly with this dr. I am sure he is a good dr. but he has just became a dr. in Feb. 08. That doesn't mean he doesn't know what he is saying. I do know he really didn't want to know much about how this is something very progressive. She had a few good days after receiving the Rocephin shot and for this I am thankful. I did bring a friend with me who has known Annabel all her life and she has had her in her care at times since she has been having these spells. She does have much experience with special needs and was there to listen for me, ask some very good question and also be a little more aggressive than myself.
I want to just report what was said, and I don't want to sound like I am complaining. I am still frustrated but that just may be me.
He began by asking how much or what types of meds she is taking. I told him about the decongestant that she is taking to thin out the mucous. He ask if it was helping and I told him that it did early on but now I am not sure. He said that this medicine is not what she needs and that it is really not helping with the mucous. He also told me that something in this DM is not really good to take for very long. He then ask about her breathing treatments and I responded that she takes Albuterol and Pulmacort. He asked how long she took it and I said all the time. I meant since the storm and living in other places that she has had more respiratory, so this is why I was doing it, also this is what I was told to do by our doctor. He told me that I should not give albuteral unless she was clearly in a respiratory situation. That this is not good for her to have all the time. The pulmacort should be used all the time every 12 hours. I know from being in the hospital and doctors that because she does have trouble with her mucous or sounding congested that I was to use this. If she is clear I never use it. Since the storm this is the longest I have had her on it. So I did learn how I am suppose to use this. Albuteral only is when we have a congested cough and that is very short term. Pulmacort is longer term and to open the airwya.
He feels strongly that she has at least two issues not necessarily related to one another. He feels she definitely has apnea. His guess at this point is obstructive sleep apnea and the second is central sleep apnea. From what he said the first is fixable and the second is not. Now remember this is what he said and I don't necessarily agree with this that thing maybe aren't fixable. The test she needs for this is a sleep study. The downside to this is she can't get it for about 2 months because so many people need a sleep study, is what I was told. She can't have it done locally due to the fact that she needs to be under the care of people who deal with pediatrics. I did voice my frustration with the 2 mths. to wait. I told him this is obviously fairly progressive and that the changes seem to be significant from week to week. He does want her on oxygen all night, since when she is on this she doesn't desat to the lower levels. She has begun to wake up very stiff and obviously scared when these happen. But they want her to be turning blue before they require this to be an emergency. You can have an emergency sleep study done, but I have to bring her in when she turns blue. This is quite hard since I live 100 miles away and would be hard to travel during the night alone with her. He wants to wait for this test to be done before we Talk about it being Central apnea. I really understand this but in the back of my mind I don't want to fail to get her help because he might think this is just the progression of her Trisomy 18. That is what our talk would be about. Anyway, I have been here before and have had to fight to get her treatment. I will be praying that if a fight is needed God will let me know and I will go to it.
The episodes or spells during the day where it seems oxygen help, he isn't really sure that the oxygen is helping. Since to him it doesn't stop them altogether. As I told him, these spells are so stressful and that to give her relief with oxygen seems fair. He's not really sure! He thinks we need to see our GI dr. to rule out any type of reflux. We have done this before but I am very aware that maybe after placing her feeding tube something could have started. I will call tomorrow for an appt. and he suggested a scope by the GI. He believes the bleeding is coming from her stomach. I guess since I don't see it in her BM's only coming through her mouth, I thought maybe this was something from her throat. He also thinks that she could be having trouble managing her secretions.
One thing that caused me concern about how much education he had concerning Trisomy 18 is his comment about something that really only happens to kids that have cystic fibrosis or kids with low muscle tone and can't produce the normal cough. I wanted to say HELLO, these Trisomy 18 babies all have low muscle tone, they all suffer from respiratory issues and have trouble with their secretions.
I want to make sure everyone understands that I KNOW there are many children much sicker than Annabel. My issue is that at first this seemed like a UTI/respiratory issue. At this point my concern is the progression of the need for oxygen and the loss of oxygen during sleep. They all tell me they don't want her sats in the 80's. Well day by day they are lowering at night into the 70's, 60's and the last couple nights into the low 50's. So sometimes I feel they are looking at the Trisomy 18 and saying this is just what happens. I would rather them say the words than give me the feeling that she is not important, or they don't want to deal with her or that maybe I am overreacting. I do know when my heart has told me to push on a certain issue, it is usually right on the mark. I am really feeling this need that I am going to have to become aggressive for Annabel's sake.
I guess my wish for today was to either give her some relief via medicine, education, testing or whatever. Maybe just too much hope...
If and when her time on this Earth is done, I will miss her desperately! But one thing I will know is that I did everything possible for her to have a good life. In my book that is not just love and being comfy, it also means the right to medical treatment.
I want to say how touched I am by the comments and the calls to say you care and that you are praying. The support means so much to us in ways you probably can't imagine! I can't respond to everyone due to the fact that I don't have email addresses, so please don't thing your comments go unappreciated. Let me say again, that Annabel is here on this Earth due to the endless prayers being offered up on her behalf. Thank you, thank you, thank you....