Friday, April 16, 2010
Plan Change: HOME TOMORROW!
Shayna's liver has a case of Mild Rejection with no trace of damage from the EBV. We will slightly up her dose of Prograf and put her on Prednisone (a steroid) to mildly suppress her immune system some more. Yes, this is playing with fire as a lowered immune system gives the EBV a chance to proliferate. We'll be back to weekly labs at NRV Carilion and just hope things get better and the EBV doesn't go crazy. I've got to pack and clean the Ronald McDonald room and I do not drive well when tired so we're heading home first thing in the morning. Yay!!!
Thursday, April 15, 2010
2 week minimum
All I know is something isn't right, which means we're not going home tomorrow but more than likely being admitted for 2-3 days of inpatient treatment followed by at least 1 week outpatient observation. Yuck. We'll find out tomorrow what that "something" is.
On a brighter note, Shayna and I walked to a really nice, little park about 1/2 mile from the Ronald McDonald we're staying at in the morning. Shayna spent a lot of time swinging and a little time exploring the other play equipment. We also had a lovely visit with Gerry and Judy where Shayna got to admire their koi pond.
On a happy baby note: One of my favorite things about Shayna these days is her desire for a name for everything and how she likes to show it off if she knows/likes something. She makes sure I see all the big lights in the RM dining room, the cars or trucks that catch her eye, the birds she spots, etc. (She also expects me to name all the people we see walking past us; I just stick with man, woman, girl, boy or baby for that.) She's just so happy when she has names for things or I stop to show her something she didn't see (like the "pretty flowers" which always gets a grin out of her).
On a brighter note, Shayna and I walked to a really nice, little park about 1/2 mile from the Ronald McDonald we're staying at in the morning. Shayna spent a lot of time swinging and a little time exploring the other play equipment. We also had a lovely visit with Gerry and Judy where Shayna got to admire their koi pond.
On a happy baby note: One of my favorite things about Shayna these days is her desire for a name for everything and how she likes to show it off if she knows/likes something. She makes sure I see all the big lights in the RM dining room, the cars or trucks that catch her eye, the birds she spots, etc. (She also expects me to name all the people we see walking past us; I just stick with man, woman, girl, boy or baby for that.) She's just so happy when she has names for things or I stop to show her something she didn't see (like the "pretty flowers" which always gets a grin out of her).
Wednesday, April 14, 2010
Recovering Well
The biopsy went well this morning; though, we were a little late getting in the procedure room so missed the same-day-return cutoff for results. We'll see what's up some time tomorrow and go from there.
Shayna is sleeping now; though, we were just discharged from the recovery area. She fell asleep nursing (reason #2 I'm so glad we still nurse) about 30 minutes ago and I'm hoping she'll stay out for at least another 15 as she really needs it. She was pissed and starving when I got her 11:30 after the biopsy. She gulped 5oz of breast milk right away (reason #3: formula is considered "food" so is not allowed but breast milk is a "clear liquid" so can be given right away) and yelled for more so we gave her another 2 1/2oz of pedialite. She's had lemon-sugar ice, cheerios and more breast milk and she's held it all down so we're all pleased with her recovery from anesthesia.
Reason #1 for still loving nursing came yesterday when I was told I could breast feed until 5am for a 9am procedure. Midnight would have been the cutoff for formula. I woke her at 5am (yes, I cheated a little). She was pissed enough that she nursed on both sides, thank goodness as that was the only way we averted full blown melt down until 10:30 (yes, the biopsy started a "bit" late and we had the usual 3-poke fiasco getting the iv started after that).
I'm ready for dinner as I've hardly had anything to eat. We'll stop at the cafeteria on the way back to the Ronald McDonald so Shayna can do some people watching since we don't have a good car-watching window (that's what we do at home during meals). Tomorrow we'll be finding some outdoor entertainment. I'm thinking Schenley Park since it has lots of trails for me and swings for Shayna.
Shayna is sleeping now; though, we were just discharged from the recovery area. She fell asleep nursing (reason #2 I'm so glad we still nurse) about 30 minutes ago and I'm hoping she'll stay out for at least another 15 as she really needs it. She was pissed and starving when I got her 11:30 after the biopsy. She gulped 5oz of breast milk right away (reason #3: formula is considered "food" so is not allowed but breast milk is a "clear liquid" so can be given right away) and yelled for more so we gave her another 2 1/2oz of pedialite. She's had lemon-sugar ice, cheerios and more breast milk and she's held it all down so we're all pleased with her recovery from anesthesia.
Reason #1 for still loving nursing came yesterday when I was told I could breast feed until 5am for a 9am procedure. Midnight would have been the cutoff for formula. I woke her at 5am (yes, I cheated a little). She was pissed enough that she nursed on both sides, thank goodness as that was the only way we averted full blown melt down until 10:30 (yes, the biopsy started a "bit" late and we had the usual 3-poke fiasco getting the iv started after that).
I'm ready for dinner as I've hardly had anything to eat. We'll stop at the cafeteria on the way back to the Ronald McDonald so Shayna can do some people watching since we don't have a good car-watching window (that's what we do at home during meals). Tomorrow we'll be finding some outdoor entertainment. I'm thinking Schenley Park since it has lots of trails for me and swings for Shayna.
Tuesday, April 13, 2010
Liver Biopsy Wednesday
Shayna and I will be driving to Pittsburgh today for a liver biopsy at 10am on Wednesday. Our weekly labs have shown that something is attacking her liver. These labs are so sensitive that there are no physical symptoms. The biopsy will show us whether her body is attaching her liver (rejection) or the EBV is attacking her liver (EBV hepatitis). The treatment for each of these are polar opposites and the treatment for one helps the spread of the other. Because the lab numbers can only show that something is going on in the liver, a biopsy is necessary to determine what is actually happening to the liver tissue. Luckily, everything right now will be outpatient so I will be able to keep Shayna's schedule and life as normal as possible. As the Ronald McDonald house (attached to the hospital) is full, we will be staying with Gerry and Judy until we can get a room. I will keep the blog updated as things happen and information comes in.
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