13 Weeks Are Gone….
I can hardly believe that we have been here for 13 weeks. I was worried about being admitted in the beginning for a couple never imagining what was to lie ahead.
Sorry that it has been so long since I have posted but I have been pretty down lately. A had his botox done on Tuesday March 26th…9 days ago. I have to say that I very disappointed since then. There is absolutely NO change in his saliva production. Well in a good way. He has more. And ever since having the botox he has this nasty cough and a TON of chest congestion. To the point where we have needed to suction him at night so he isn’t satting in the 70s while sleeping. The doctor who did the botox said it could take up to 12days but I can’t imagine that in three days there is going to be a miraculous outcome.
His episodes also started to happen again on Sunday during his nap. Yesterday was an hour long. The doctor was in here the whole time it was going on and I thought that I was going to lose it. I am so emotionally drained. I cried so much yesterday that I still have a headache today. I was so mad and frustrated. I laid him on his bed and just yelled that I can’t do this anymore. The nurse came over and hugged me very tight and told me that it wasn’t my fault. That I was doing what I need to do. And most of all, she told me that yes, it wasn’t fair. She is awesome. I just don’t understand why everything that we do just seems to complicate things. This was not supposed to happen after botox but once again A has other plans. This wasn’t even one of the risks or rare side effects!!!
At the end of his episode yesterday I told the doctor that I wanted to leave. I just want to go home. She told me that we could go by the end of the week because she is going off service so it would work well for her. So after some thinking I have decided that I might just wait to meet this new doctor on Monday. New eyes never hurt. And I figure I have been here so long already, that what the heck will another week hurt?
Then the patient rep that embarrassed me in the team meeting way back had the nerve to come in here yesterday. I was emotional the entire day even talking and he started to get all nice with me. Telling me that he can’t believe we are still here. How he can’t imagine how hard this is on me. Then the wrong line he said….I know how you feel. Really? You have a child that has been in hospital for 13 weeks with no answers? A child that goes blue too many times a day? I don’t think so. Of course I didn’t say this to him, but I did tell him that he didn’t know how it felt. That he goes home at the end of the day and can forget about what goes on here. It felt good.
On an up note, grandma and grandpa S came down on Saturday and stayed until Monday afternoon. J and his dad went to a Leaf game so his mom and I went and saw the show We Will Rock You. We had dinner first and then met up at the Hard Rock afterwards. It was so nice to get out and have fun. Plus I got to sleep in a real bed for three nights in a row at the hotel! Social work got Jeff and I one for the Friday night and then we stayed with his parents the next two nights.
So it looks like we will be home soon. The saddest part of this for me is that we are leaving without any much needed and wanted answers. Unless of course this next doctor is Dr. House?!