Saturday, April 19, 2008
Testing, Testing 1, 2, 3
Well after my post on sunday it turns out I wasn't as well as one might have thought. I continued to use 100% oxygen and work really hard when breathing for the next couple of days which was of a concern to the dr's so they gave me some steroids and a blood top up. I am pleased to report that it has helped greatly and my oxygen is down again now.
This little unwell period made the Dr's start to think about how there might be something else that is slowing down the growth of my lungs. The fact that I am now putting on a good amount of weight means that my lungs should be starting to get better, but they still seem to be a little slow in their development. Mummy and Daddy were called in to talk to the consultant on Tuesday and to talk about what they are going to look at. One of the things was that they wanted to do a gastric probe to see if I had large amounts of reflux. It meant that they put a second tube down my throat and it sat there for 24 hrs and was connected to a machine that measured the PH level in my esophagus. The report came back and I didn't have large amounts of reflux, so that is one thing to cross off the list.
Another thing that they talked about is surfactant. Apparently that is something that your lungs makes that is a bit like a lubricant. Our consultant has a gut feeling that I might not be making one of the proteins that makes up the surfactant. The only testing that there is for that is in the USA! So He was talking to starship hospital to try and arrange the testing to be done. At first it was thought that I might have to go to starship hospital to have the tests done, but we soon found out that I could stay here, and they could just send blood samples to the US. (Mummy was relieved not to have to go to auckland with me, although I was secretly looking forward to going on a plane!) As you can imagine there is a bit of paperwork involved with sending blood overseas, so hopefully we will get that done this week. The only bummer is that the results can take weeks to come back!
The Doctors have really decided to test me for lots of stuff. "they are ticking all the boxes" if you like. They are also looking at the family medical histories for clues. I don' t know if I want them to find something or not. I guess if they do find something and it is easily treatable it will speed my recovery up which will be a good thing.
So as you can imagine my week has been pretty busy and a bit topsy turvy. It means that I have been out of kilter with my sleeping and been getting grumpy again. I had a great day today though. I was awake and waiting for Mummy when she came in today. I had been awake playing with my toys for about 3 hours by then and then we had a really nice long cuddle. I fell asleep pretty quickly and then Mummy felt bad when after 3 hours she had to put me back to bed. Like most people I don't like being woken up, but I settled pretty quickly and went back to sleep.
With Love From