For the 3 or 4 of you waiting with bated breath for my little updates, I thought you'd like to know that Shayna's EBV numbers went from 270,000 last Wednesday to 99,000 this Wednesday. We only started the Valcyte (antiviral) Monday evening so I don't know if that's the reason it's down or if it's another reason. I'm just very happy they're down and I hope they'll keep going that way. On the other amazing side of having another person's liver, her liver numbers are down which hopefully means the rejection is also getting under control. Since I've only seen the number and not actually talked with anyone, I'm hesitant to get too excited until I see what next Wednesday's lab results will be and have the verdict verbally confirmed by our nurse coordinator.
We are thoroughly enjoying Grandma Melinda's visit with lots of activities and a constant play buddy for the baby. Shayna is taking longer and longer unassisted walks to wonderful things like hats and balls. I even think she's starting to say ball. Nahum probably cried himself to sleep in Israel because he misses Shayna so much. He's visiting his family, and a couple colleagues, for a week and will be home Thursday. I am doing well. I got to swim with my friend Leslie today and do some plant/garden shopping with Melinda and Shayna.
Friday, April 30, 2010
Tuesday, April 27, 2010
Strawberry-Valcyte Ice Cream
Shayna's EBV blood level jumped in the 5 days she was on the steroid Prenisone so our newest nasty tasting medicine is a last ditch effort to keep the EBV from attaching her liver since her body already is doing a little of that. Valcyte is an antiviral drug typically used to fight CMV (another common virus that can cause some trouble with transplant patients) in some transplant patients; though, it is an off-label use for liver transplant patients. Since we are currently dealing with a little Mild rejection so have to suppress her immune system, we also have to help her immune system deal with the EBV. While all this is a bit scary and overwhelming, it's nothing the Pittsburgh transplant team hasn't dealt with before. It also strickly manifests itself on the lab level only so Shayna is still growing and developing with no signs of any issues.
In fact, we had a major development milestone yesterday. Shayna strung several steps together a few times and even kicked her purple ball on one of her walks. She was showing off for her physical therapist I think as she usually like to do firsts with an audience if she can get one. She also discovered the joys of doors and draws Sunday (and I forgot to get cabinet locks on my shopping trip yesterday). The only thing left is climbing and then nothing in the house will be safe. It is truly a joy to be in this position with Shayna. Watching her thrive and grow brings Nahum and I such pleasure that the extra work is actually fun.
With all her new talents, I don't think she's quite ready for a spoon. I let her feed herself yogurt & kix Sunday. The spoon was quickly abandoned; though, she did have fun trying a few times.
She weighed in at 8.46kg (18lb10.5oz) last Saturday. That's a 140g gain in one week (5oz)! Since today is her monthiversary, I'll check her height on the back of the door after her nap when I can get some help. 14-months-old today!
Friday, April 23, 2010
Crabby, Steroid Baby
We made it home safe and sound last Saturday. Shayna is getting to be a much better road-tripper. She slept for a full hour in the car and didn't complain while falling asleep or waking up (a first for post-transplant trips). We spent most of the drive home either playing "what's on your head" where Shayna puts various things on her head and hoots at me to wonder where they went (she can't see them) then show great enthusiasm when she pulls it off to show it to me in the review mirror or dancing to Lady Gaga or Miley Cyrus. (We now listen to both daily as she likes to dance; though, I have order a couple new cds so we can have a little variety.) She also chilled out and ate snacks I passed her.
We had labs in Pittsburgh last Friday that showed a slight decrease in liver numbers but they didn't change this week after 5 days of prednisone (steroid to suppress her immune system) and a slight Prograf in increase (normal/lifetime drug for suppressing the immune system) so we doubled the prednisone dose to 10mg a day. She was already a bit crabby with the 5mg as she squawks in her high-pitched, ear-splitting screech much more readily these days. We'll run labs again next Friday and start her prednisone wean too. As long as the EBV doesn't skirocket, it'll probably be a 6-8 week weaning process.
Speaking of weaning, we're weaning from nursing. Shayna is taking it much better than I am and we've only gone from 6 to 4 sessions a day so far (before and after each bed time). She gets thawed breast milk in her sippy cup during the day so we might have room for food in the freezer again in a couple months. (She also takes cow's milk and water.)
This week's milestones are first steps and climbing stairs. She took her first unassisted steps on Tuesday April 20. The most she's done to date is 3 before grabbing something or falling and she doesn't like walking on her own either. She gets psyched out easily with both standing or walking alone so complains when we let go of her (unless she's playing "standing baby"). She finally figured out what to do with stairs so we use that for physical therapy. Stair climbing combines coordination, balance and strength.
I've posted some new videos on youtube this week for Shayna's adoring fans.
We had labs in Pittsburgh last Friday that showed a slight decrease in liver numbers but they didn't change this week after 5 days of prednisone (steroid to suppress her immune system) and a slight Prograf in increase (normal/lifetime drug for suppressing the immune system) so we doubled the prednisone dose to 10mg a day. She was already a bit crabby with the 5mg as she squawks in her high-pitched, ear-splitting screech much more readily these days. We'll run labs again next Friday and start her prednisone wean too. As long as the EBV doesn't skirocket, it'll probably be a 6-8 week weaning process.
Speaking of weaning, we're weaning from nursing. Shayna is taking it much better than I am and we've only gone from 6 to 4 sessions a day so far (before and after each bed time). She gets thawed breast milk in her sippy cup during the day so we might have room for food in the freezer again in a couple months. (She also takes cow's milk and water.)
This week's milestones are first steps and climbing stairs. She took her first unassisted steps on Tuesday April 20. The most she's done to date is 3 before grabbing something or falling and she doesn't like walking on her own either. She gets psyched out easily with both standing or walking alone so complains when we let go of her (unless she's playing "standing baby"). She finally figured out what to do with stairs so we use that for physical therapy. Stair climbing combines coordination, balance and strength.
These are the back deck stairs and the rock works as motivation because she's climbing to reach a goal.
I've posted some new videos on youtube this week for Shayna's adoring fans.
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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