What was supposed to be a 4 day liver evaluation has turned into a 2 week stay here at Children's Medical Center of Dallas. They have run every test known to mankind on my little guy from a liver biopsy, CT scan, ultrasound, sonograms, too many x-rays, dental tests, ears, eyes, and nose cultures, EGD scopes, psych evaluation, social worker evaluations, yadda yadda yadda . . . and more yaddas. The good news, I suppose it's good news, is that C's liver is not in such bad condition to warrant a transplant at this time. However, his spleen is huge beyond limits and should that be taken out or is it doing good to act as another place, a sponge of sorts, to catch all the blood the liver is sending every which way but where it should be? Anyway they decided to just keep an eye on it for now. Which is fine by me cuz the more I learn about transplants, esp. how the anti-rejection steroids rid you of any immunity afterwards, the less and less I think this is a good idea. With CF, C is prone to infection, so . . . Of course I have my own fears amplified over that since that is exactly how my oldest child died at 3 months. Strong steroids to rid him of his seizures also rid him of his immunities and Cam caught a cold.
Case in point, with all these tests and being in the hospital, Chase caught pnemonia. He certainly didn't come here with it. So now we are going on 2 weeks here, with more and more tests, duplicate tests, duplicates, triplecates, guadtruple-cates. His stomach has a huge pain in it and he can't shake off a fever. Morphine is once again, C's drug of choice and until they can figure out where the fever and pain are coming from, we are stuck here - and the days are dragging on and on and on. Every test for infection comes back negative, so they had to give Chase another IV so he could have a CT scan with birilium in his veins. You can imagine how well that went over after he only agreed to get a PIIC line with the assurance that he would not have to have any more IVs. The trust level for any health care people to an 11 year old mind just smashed out the window.
The thing I'm discovering about Children's in Dallas compared to Cook's in Fort Worth is that there are simply too many doctors and residences. The whole too many cooks spoiling the soup is in full swing because these doctors all have their own concerns and they simply have no communication. From a parent's perspective, it is a little frightening. More than once, one doctor will prescribe a treatment only to have another come in and say that that is too dangerous for the liver. I've never experienced that with Cooks. My pulmonologist pretty much takes charge and confers with the GI and Endrogine guys and they actually confer. Granted, Cooks is much smaller and it isn't a teaching hospital with a myriad little residences running around, but I'm getting a little fed up regardless. I realize C must be an interesting learning experience for these new doctors with all the things going on with him that span several different departments, but come on people, just talk with one another. I know you're busy and important, but is that so hard?
Anyway, the pulmonologist came to me and suggested that we transfer back to Cook's since they are just starting their clinic here and it will be confusing for a while. I just stood there slack-mouthed, while my mind was working out the details that Yes! let's go back to a familiar place that has people that will actually work with each department and get us home. Good. Fine. Let's go. Of course, wouldn't you know that there are no beds available at Cooks. I'm thinking that there may never be any beds available this time of year. From their perspective, if you have a kid in emergency, waiting for a room, verses another who you know is already being taken care of at another hospital, who would you give the room to?
We're never going to get out of here.