A Plan In Place…
So the team meeting is done with. I have to say that I think that I did very well considering the range of emotion that I was feeling. It is always so hard to go into these types of meetings strong and confidant and then feeling like you are going to start bawling as soon as you start to talk. It was a little intimidating having so many different types of doctors in there all listening to what I had to say and asking questions.
So here is the plan. Every single doctor involved agrees that we need to treat the reflux. The first step is having a scope done of his airway and lungs. They are also going to do a wash of his lungs and send off a sample to see if this might help them at all. The scope is going to be done in the OR under a general. I am happy because A has had too many scopes for my liking awake and it is not nice at all. However the ENT is not comfortable doing it while awake anyhow because of the spells that A has. The general worries me a bit though because he always does so poorly when any type of sedation is used. This all being said, his ENT said that he would like to see A in the ICU afterwards as an extra precaution.
It also came up that he would like to remove A’s adenoids. This scares me even more because it is a surgery and added to what is already going to be happening I don’t know what to think. However his ENT and I agreed that if he felt once getting in there and seeing for sure the size of them that it wouldn’t really make a difference then he would leave them. If he felt that they could be contributing to his issues then he will remove them. Hard to stay positive when the ENT is the one saying how he is worried how A will do.
After the scope comes one of my biggest fears. Fundo. I am starting to feel more comfortable with it however knowing that I have tried everything else and knowing that it really isn’t an option anymore. It is life or death.
After recovering from the fundo will come the sleep study. NOW, we are hoping that the fundo will help MANY of his desat spells. We are hoping that his BIG spells are caused by reflux. Of course none of this we know for sure. Which makes it hard but again, nothing left to do. I was not able to speak with GI as she was called to surgery but I was shown the ph probe results that he had and it did not look good at all. I am still waiting on numbers of how many times and so forth. It is just so hard to believe how much he is refluxing but yet he is the happiest kid in the world. The docs agreed that it does make it harder for them as well because they aren’t seeing a “sick” acting child. Instead he smiles and coos at them!
Now the scary part. Every doctor agrees that they do not think that the reflux is his only issue. So the sleep study will show what is going on at night (if it isn’t just reflux). I asked about this because he does drop a lot during the night but he is worse during the day. During the night he drops to the 40s, 50s and 60s but it is odd because I can tell by his breathing that he is going to do it. During the day he changes colour MANY times and we think it is different then what happens at night. Central apnea versus obstructive apnea.
Of course this is when the trach came up again with the vent. But we are going to wait to go down that road. I need everyone to please pray that A will not have to be trached!!! I get very emotional just thinking of it and it just plain sucks.
The main doctor that I have been dealing with this week came in after to see how we were. Sad. Scared. Numb. She is in her last year of residency and I have been very pleased with her. She told us tonight that she knows how hard it is for us to make such crappy decisions, but that A was not going home until they figured him out. WOW. Finally. Last week the doctor wanted to send us home because he was stable. She said her team thinks he is far from stable and they are afraid that if we brought A home now that he would die. Blunt. To the point. But REAL.
So all in all it looks like we are in for a long stay. It has already been a week and man oh man does it ever suck! I came home tonight to get a good sleep and put up some pictures of my little man as I am sure that everyone misses seeing his face! The nurse that is on tonight is absolutely wonderful! I asked her if she used to be a NICU nurse because she just has that about her and she said no she just likes kids. I told her that I have met many a nurses that work with kids but don’t seem like she does. Well long story short, her younger brother has severe cerebral palsy. It is very obvious that she has dealt with a lot as she is compassionate, loving, supportive and caring.
I have to say that although I was frustrated in the beginning with this hospital and these docs, they have really stepped it up. I just hope that whatever lies ahead and whatever decisions are made that I will feel good. I hope that everything works out well and A stays strong and keeps fighting.
Now for some pictures!!!
I also want to say thank you to Shannon (Olivia & Avery’s mom) for coming to visit last night. It was SO nice to have you come down!!! You are an absolutely awesome person and I am lucky to have met you. By the way, the lasagna was GREAT!