After the CT scan, the GI doctors decided they needed to take over C's management again, instead of the pulmonary docs, so, we won't be transfering over to Cook's after all. Which is fine. They are wondering if what the scan showed is infection or infartions. C is on some heavier antibotics to cover a broad range, but if it doesn't lessen the fever and stomach pain, we might need to consider a shunt, bascially taking out the spleen and using part of a vessel from somewhere else and turning it into a shunt from the liver to make the blood flow where it is supposed to.
I started crying when they told me this. I'm not sure why. Too much stress I suppose, because realistically we came in here for a liver transplant, but this would be much less traumatic, plus he won't have to have anti-rejections. And getting rid of that huge spleen would take a lot of pressure off his lungs and hopefully his liver too. But we aren't at that point yet anyway. First we need to wait a few days and see what happens with his pain. The fever has already gone down. There is a spleen surgeon the GI team is consulting with who is consulting with the spleen/shunt team down in Houston . . . so basically we're waiting right now. I really thought that that coming in the hospital in November would mean we wouldn't have to spend another Christmas in the hospital. Ah, well.
The pain management team is giving Chase a PCI pump today so he'll just have to press a button to get his morphine instantly rather than wait to tell a nurse. Anyway, so that is where we are.
Oh, I just had a pulmonogist come in and tell me they were discussing about whether to just take part of the spleen away, that way there will be some immunity benefits still. A lot of discussion about this, a lot of different options. Which one is best? How's a parent to know?
As my dear friend Faith, and Harry Potter fan said, she wishes she could wave a wand and say "liver repairitus" or "spleen repairitus". Maybe that's why I love to write fantasy, create worlds with lots of magic. I could use a little right now.
4 days my butt
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.
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.
Unbelieveable Month
November has been one of those crazy kind of months that I'm not sure if I'm happy to see go or not. Like a roller coaster, there has been a lot of soaring highs followed by crashing lows.
Beginning the month, I went to the writers conference which was fabulous, then I had two days to work, get laundry going, pack, and off our family went to Disney World, which I'll blog about and put up pictures once everything slows down. Then a day or so after Disney, Chase got sick, put in the hospital to clear out his lungs for around 10 days. While he was there at Cooks Childrens in Fort Worth, the hospital in Dallas called and said they had set up his liver evaluation. We had been waiting for that, so we got Chase released early from Fort Worth early to be readmitted on the same day at Children's Medical Center in Dallas. He was supposed to come home last Thursday, but they keep finding other deeper infections and pancreatic stuff and more and more so now November is gone and Chase is still in the hospital. And I am so ready to just be able to be done with this for just a little a while.
Meanwhile, I've had some real interest in my book and have had my fingers crossed most of November as well. Again, I'll blog all about that as well once I've a chance to catch my breath. I'm off to work for a few hours, then up to the hospital to replace my sweetheart who has been there the last couple of days since I couldn't any more days off work.
Beginning the month, I went to the writers conference which was fabulous, then I had two days to work, get laundry going, pack, and off our family went to Disney World, which I'll blog about and put up pictures once everything slows down. Then a day or so after Disney, Chase got sick, put in the hospital to clear out his lungs for around 10 days. While he was there at Cooks Childrens in Fort Worth, the hospital in Dallas called and said they had set up his liver evaluation. We had been waiting for that, so we got Chase released early from Fort Worth early to be readmitted on the same day at Children's Medical Center in Dallas. He was supposed to come home last Thursday, but they keep finding other deeper infections and pancreatic stuff and more and more so now November is gone and Chase is still in the hospital. And I am so ready to just be able to be done with this for just a little a while.
Meanwhile, I've had some real interest in my book and have had my fingers crossed most of November as well. Again, I'll blog all about that as well once I've a chance to catch my breath. I'm off to work for a few hours, then up to the hospital to replace my sweetheart who has been there the last couple of days since I couldn't any more days off work.
Last Day at World Con
The Texas Capital at twilight. The hotel lost it's vibrancy after most of the conference goers left. It was kinda sad, so Heather and I went downtown to the Bob Bullock museum and watched Superman Returns in 3-D in their omni theather. 
Looking down at the floor of the museum.
Earlier, while the conference was still buzzing. Heather, me, & Faith at the Cheesecake Factory.
Texas star outside of the museum.
Looking down at the floor of the museum.
Earlier, while the conference was still buzzing. Heather, me, & Faith at the Cheesecake Factory.
Texas star outside of the museum.
The Howards
Had to get a picture of the Howard Awards.
Me & Sharon Shinn. She too, was very nice. I got a kick out of her at the awards ceremony. I happened to be sitting a few tables behind her. As they were doing a tribute for the artist John Palencar, every time one of her book covers that he had done came up on the screen, she raised her arms in glee. It was very cute to watch her excitement.
Me & Sharon Shinn. She too, was very nice. I got a kick out of her at the awards ceremony. I happened to be sitting a few tables behind her. As they were doing a tribute for the artist John Palencar, every time one of her book covers that he had done came up on the screen, she raised her arms in glee. It was very cute to watch her excitement. 
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