Well what a day I have had. Dr R called today and is wanting me to go through pulmonology or cardiology to manage Carson's NG tube. She said the two doctors have completely different ideas of leaving him on it but doesn't want to be in the middle of these two doctors. So how nice is that? I called pulmonary and was pretty much not a very calm person and told the nurse that if no one is managing him, I'll pull the thing out. I'd be glad to let him live a normal life!! She calmed me down and understood my frustration and said they have dietitians in their clinic and to leave everything alone and keep doing what I'm doing. Carson will now have his NG managed under pulmonary. Dr E wants him to get up to at least the 25-33% and then start weaning him. As of his last appointment which was 2 weeks ago, he was around 7%. I'm sure he has gained a little weight since then but we still have a long way to go.
Coltan and Cody are going to spend the weekend with their dad and I asked him to keep them a little longer. I'm now giving Carson 13 doses of medicines, 4 breathing treatments, and 5 feeds a day. I'm mentally and physically exhausted due to lack of sleep. So until I can get Carson balanced, and myself for that matter, I think Coltan and Cody would get more quality time with their dad. I'm really upset thinking this is making me a "bad" mother but I just think this way, I can get some things figured out with Carson. I know that Carson loves his brothers so I will still have them after school and dinners. I just don't know what else to do. I feel very bad because when they come home, I usually have them help me out and I know that they are kids and shouldn't be helping me take care of a two year old.
Please pray for us and that this is only temporary and that Carson and I will get to live a normal life soon. I just want him to be better and I get down thinking about all of this.
So for the rest of my fun adventurous day, Carson wanted a piece of toast with butter and grape jelly. This is something that I have tried to feed him numerous times and he has eaten. So he took about two or three bites and had a terrible allergic reaction. I ended up giving him 4 breathing treatments and he finally looked and sounded better. How many scares is one child allowed to give you in one week/lifetime??? I think he is definitely maxed out on this.
So now we are doing better and I'm hoping that he will get some rest so we can attend some of Coltan's and Cody's soccer games tomorrow. They are in a tournament this weekend.
This is how well he does for the first half of his treatment. They usually last around 7 minutes.
You can see his smile through his mask. That smile is what keeps me going.