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?!
Well after my last post I ended up meeting with the chest doctor that I had been wanting to see along with one of his collegues and my complex care doctor. I also asked the charge nurse to come with me because she was with A the other day when he had a desat of 11. To be honest the meeting didn’t really help me much but at least now they know how I am feeling and that I am not just going to sit here day after day with no answers. I asked the chest team what their thoughts were on ILD but they didn’t feel that right now it was something to look at because his CO2 levels have never really been a huge issue. Add on to that, the only way to diagnose is to do a biopsy.
Later on I went and met with patient rep to discuss my issues and problems. I had ended up calling them when A was in one of his little episodes and I was at my wits end. I cannot keep on going watching him suffer and struggle. I had my social worker come with me and she was able to take notes and help me out a bit. After hearing my story he told me that he thinks that I better put on my seatbelt and hold on for the ride. Never heard it put that way before! He was very wonderful to talk to and I am hoping that his idea is going to help out a bit. The plan that we came up with was for me to write out a list of questions that I have for each doctor that I am dealing with. I did that with my social worker today and we gave him the copy. Tomorrow he will be distributing the list to all of the doctors and then next week we will have a team meeting. He will come along with me and he said that there will be no going around in circles and all of the questions will be answered. The reason for him giving them tomorrow is so that they have time to think about them and put them down in writing for me as well. This way there cannot be any confusion with what is said and what is happening.
So after this I come back upstairs and find out that A is going for a sleep study! Six weeks to the day that we came in for one. So that was done last night and I was really not thinking it would show much. However I stayed down there for the first few hours to watch what was going on. A was sleeping and satting 100% but his CO2 level was between 70-80. The sleep tech then came in and turned off the oxygen to see what would happen since the doctor wanted it done off O2 anyways. Well after a few minutes his sats would drop but so would his CO2. So then the oxygen would go back on and up would come his sats and CO2. Strange. Just automatically made me think to the meeting where they said that they weren’t concerned about his lungs because his CO2 levels have not really been an issue. I have been dying today to find out what it showed but looks like it will be tomorrow. I have to admit that I am kind of scared as to what it will show. I just hope that it will be an answer to all of the issues that we have been having.
A and I had some fun today and went and played bingo with the Toronto firefighters. There was really cool prizes and it was nice to be out of this little room!!!
I am off to go sleep in the playroom now…..fingers crossed this sleep study will give some insight!!