Monday, November 24, 2008

Quiet Days

We've had a few quiet days around here. Kaitlyn is over her cold but we are back to this thicker secretions that keep coming and going. Her sats are unaffected, and she seems happy. We have to be really careful to suction her often, and always suction before we pick her up or change her position! She can't tolerate sitting up very well at all these days. Even sitting up in my lap for a couple of minutes causes her to choke! I wish we had doctors around here that were even sympathetic to SMA. We do chest percussions and cough-assist three times a day and increase this to every few hours around the clock when she is sick. We also do postural drainage. I spend a great deal of my day performing some sort of respiratory treatment. Tim always does the last treatment of the day to help out. I don't think that the problem is too few treatments as her lungs are always clear. X-rays are always clear and doctors at the hospital are amazed at how good she sounds most of the time. We have had very few issues with plugging. So this thicker increased secretions has me baffled. There are things that we would love to try, but there isn't a lot of support from our local hospital and even less knowledge about SMA.

We have a neurology clinic coming up this Wednesday. We always seem to have a lot of things that we want to accomplish and only half gets done! Hopefully this clinic will be very productive. We have to meet with our new pulmonologist. The pulmo. we were seeing has resigned :( Our new pulmo. is actually the first pulmo. we ever saw. Kaitlyn was only five months old, just diagnosed, and he told us that a respirator was no way to live and that the cough-assist wasn't used on infants so young!! He's a very nice man, but he's a CF man. If I hear him compare SMA and CF again I think I'll say a bad word! He doesn't get SMA but I have no doubt that he is very good at what he does. I am hoping that we can come to some sort of an understanding about treating Kaitlyn. I think that she has outlived any expectation that he had, and given our hard work to get her here, he may be more willing to listen to us now. I hope so because I want to discuss with him Kaitlyn's secretion issues, and I'm really hoping he doesn't feed me the line that it's the natural progression of the disease. We'd be really interested in trying IPV or nebs, but I think that IPV is the wave of the future. Some hospitals are having very good success with this machine and I know it could have been very helpful last May when Kaitlyn had an awful chest cold for three weeks, two of which were in PICU! I feel like we need to get IPV going sooner rather than later, if she's too old she may not take to it so well.

I'll let you all know how it goes! Thanks for listening!

Alexander has been very busy the last few days!! The terrible twos have begun!! And Home Care Services (paying for VON nursing) thinks that we only need four hours a week nursing!

This was the first peice of work. He was helping to clean up! Yes....that's playdough, his morning toast, toys, Kaitlyn's brand new book, Owens view master, and sippys(the only thing he is told to put in the sink!!!!).

His other new favourite(which I actually don't mind....but he thinks I do ;) is to get in the toy box and huck everything out onto the floor! This lasts for several minutes and I can tell where he is from all the noise when things crash to the floor!

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