So here we are at the end of the day writing from Children’s hospital in Seattle. Even with the change of scenery the needles are still unpleasant. Unfortunately we still don’t have a lot of definitive answers to all that is going on with Greyson, but a couple of the early signs are not so pleasant. Not life threatening, just extremely painful. I’m talking about the fact that it looks like Greyson has developed kidney stones. Having lived through kidney stones with his mom a few times (like on our wedding day!) I can assure you they are not a pleasant thing at all. We haven’t talked to the Dr.’s yet about this, but we were both here when they did the ultrasound of his kidneys and the tech was definately measuring a few objects that were inside his kidney. This coupled with the information that he was dehydrated and had excess calcium seems to lend support to kidney stones as the diagnosis for the bloody urine. If that is the case it is good that we have a diagnosis, but bad that it is something that can be so painful.
As for the other issues they seem to be better. His trach aspirate came back with some stuff in it, but no infection and basically I am told the stuff that was in it is pretty much what you would expect to be hanging out in a trach (Gross!). The initial results from the lumbar puncture do not show infection, but they have to wait to see if anything grows out.
His metabolizism was out of whack but that seems to be coming into line slowly. So we are hanging out right now hoping everything stablizes and we can go home. As I type this knowing about calcium buildups in his kidneys it certainly seems like he is experiencing the pain of stones.
On a positive note one of the Dr’s that Stacy talked to today was going to call one of Greyson’s Dr’s and see if we can get him off one of his diretics. One of his diretics is very potent and can wreck havoc on his metabolism if we are not careful. This could also lead to becoming dehydrated which can impact the production of stones. He also talked to her about Greyson’s lungs and was very encouraged by what he was seeing. His X-rays looked good and he was going to talk to Greyson’s Dr (yes again) about trying him for some short periods (probably minutes, but anything is good!) off the vent to see how he would do. We will see what becomes of this. The important thing is that several people have said that his lungs did not look like what they would expect a preemies lungs with chronic lung to look like (not perfect, but not what they would expect) and they didn’t sound like they would expect a baby with chronic lung to sound like. All this means that he is doing pretty well on the vent and his lungs seem to be healing and growing now that he is on it.
So we press on asking God to touch Greyson and free him from the pain he is experiencing. Having just weened him off of the narcotics a week ago we are not anxious to see him started on anything powerful again, yet are not enjoying watching our little guy suffer either.
We can now pray for his kidneys and to have all the stones to go away. God has certainly answered the prayers about his lungs ( don’t worry we will not quit praying about them) but now we need to concentrate on the kidney stones as well. I just marvel at how well Greyson has really done and I am praying he doesn’t have to go back on the drugs you have worked so hard to get him off. Hopefully it is the diuretics that are causing the problem, so maybe when he is off of them more, he will not have trouble with the kidney stones. Lord just give the drs. the knowledge of what to do for Greyson. He certainly looks cute in his hospital gown. Give him kisses for me and hopefully you will all get some sleep tonight.