Sleep Study Was Done!

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!!

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2 responses

  1. huether family

    hey girl, hope that you find some answers soon, and glad to hear that someone is listening to you and helping you have a voice with all the doctor’s. It may nor help, but at least you will get some question’s answered and they will know what you are thinking. Hope tomorrow is a good day and whatever the results are Ashton is a fighter, he’s made it this far, because of you, so stay strong and we will all pray for the little guyTake CareHugsMandi

    February 22, 2008 at 4:57 am

  2. Sis Sarah

    I hope they come up with some kind of plan for the CO2 levels.And the Chest team are actually wrong. Most kids get diagnosed with ILD by a CT SCAN, but they typically can not diagnose which kind of ILD they have, unless they do a lung biopsy.Wesley was diagnosed with ILD and the kind he had by CT SCAN.Most likely Ashton was not born with ILD if he has it, it would be something he aquired and the treatment for those kinds of ILD are very similar if not the same.((BIG HUGS))

    February 24, 2008 at 3:38 pm

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