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.
Friday, April 9, 2010
Double Trouble!
Shayna and I went to the doctor this morning just to make sure she didn't have an ear infection as she'd been pulling and holding her ears a lot. No ear infection (just self soothing from teething) but she did finally DOUBLE her birth weight. She's now a whopping 8.2kg (18lb1oz)! She is also telling me no for things other than eating by turning her head as far over her left shoulder as possible and looking down. She'd been doing this for months to indicated she didn't want whatever you were trying to feed her but only did it when offered food. I asked her today if she needed to go to the potty and the brilliant little monkey turned her head to indicate no. She did this more than once today but also didn't do it once. She just made one of her talking noises so I put her on the potty and she peed a lot.
On a more serious note, we will probably be heading to Pittsburgh next week because her liver numbers did jump. The doctors were still in the OR at 5pm so they have not had a chance to review the labs to let us know how urgent the situation is. If we don't hear from them tonight we'll hopefully won't head up until Tuesday for a Wednesday morning, outpatient liver biopsy. If someone calls us tonight then we have to drive up Sunday and admit her to do an inpatient liver biopsy Monday. Nahum leaves for a conference in England on next Saturday followed by a short visit to his family in Israel so it'll just be Shayna and I in Pittsburgh. Depending on the biopsy outcome (if there's treatment needed and how long that will take), my CO mom Melinda will fly out to stay with us for a week or so.
We'll let you know when we know. Until then, keep your fingers crossed for us.
On a more serious note, we will probably be heading to Pittsburgh next week because her liver numbers did jump. The doctors were still in the OR at 5pm so they have not had a chance to review the labs to let us know how urgent the situation is. If we don't hear from them tonight we'll hopefully won't head up until Tuesday for a Wednesday morning, outpatient liver biopsy. If someone calls us tonight then we have to drive up Sunday and admit her to do an inpatient liver biopsy Monday. Nahum leaves for a conference in England on next Saturday followed by a short visit to his family in Israel so it'll just be Shayna and I in Pittsburgh. Depending on the biopsy outcome (if there's treatment needed and how long that will take), my CO mom Melinda will fly out to stay with us for a week or so.
We'll let you know when we know. Until then, keep your fingers crossed for us.
Saturday, April 3, 2010
From Gefilte Fish to the Easter Bunny
Lots of holidays to celebrate. Shayna made her first Easter Egg hunt this morning; though, since parents couldn't accompany their toddlers into the coral (see pic below) we had to rely on a friend's child to get Shayna couple eggs (Thanks Sharon).
Labs went well again this week with very little fussing by Shayna. Sitting on my lap for them seems to really help. The results were not that awesome though. 2 of the 3 liver numbers they watch had climbed a little then plateaued for a week then climbed again last week and her EBV doubled again. We'll repeat everything again next Thursday and if it's the same or worse we'll probably have to head to Pittsburgh for a liver biopsy to test for either EVB Hepititis (where the EBV has begun attaching the liver) or rejection. Neither one is a good scenario as we could be spending a week or more up there for treatment, plus they're just bad things to begin with. This is also par for the course so none of this is unexpected or abnormal. I'm incredibly thankful for the health care passed this week so Nahum and I will be able to insure Shayna until she's 26 and she won't be denied coverage after that for her pre-existing condition as the infection/rejection struggle we're in right now will continue for the rest of her life.
Our adventure for next week includes a trip to DC. We'll be heading there tomorrow through Wednesday for some museum fun and the gorgeous cherry blossoms.
Patricia, Shayna, Hila and Sharon in front of the Toddler Egg Hunt coral.
We went to meet with Sital and Serena. Serena actually got some eggs as she can walk well and is exactly 1 month older than Shayna.
We did the obligatory torture you toddler with the weird constumed person picture.
Most kids took too it.
Ours did not.
Labs went well again this week with very little fussing by Shayna. Sitting on my lap for them seems to really help. The results were not that awesome though. 2 of the 3 liver numbers they watch had climbed a little then plateaued for a week then climbed again last week and her EBV doubled again. We'll repeat everything again next Thursday and if it's the same or worse we'll probably have to head to Pittsburgh for a liver biopsy to test for either EVB Hepititis (where the EBV has begun attaching the liver) or rejection. Neither one is a good scenario as we could be spending a week or more up there for treatment, plus they're just bad things to begin with. This is also par for the course so none of this is unexpected or abnormal. I'm incredibly thankful for the health care passed this week so Nahum and I will be able to insure Shayna until she's 26 and she won't be denied coverage after that for her pre-existing condition as the infection/rejection struggle we're in right now will continue for the rest of her life.
Our adventure for next week includes a trip to DC. We'll be heading there tomorrow through Wednesday for some museum fun and the gorgeous cherry blossoms.
Monday, March 29, 2010
A Gefilte fish story
I volunteered to bring the Gefilte fish to Pesach/Passover dinner tonight for our group knowing that my mother-in-law Lea makes an awesome Gefilte fish. Over skype a week ago Saturday, I asked if she could some how get me that recipe. Lucky for me, she was excited to share because it took some doing. First she wrote it out in French because she cooks in French so she won't forget the language. Then she nagged her husband Dov to type it out in Hebrew on the computer as she verbally translated it into Hebrew for him. (They live in Israel, he being born there and she moving there probably in the early 1950s from France though she was born in Germany.) After a few days of this, she gives up and calls her oldest son David in northern Israel and translated it to him over the phone as he typed. David then sends it as a pdf to Nahum who printed it off for me this last Saturday. Saturday night he translates it to English for me as I write out the ingredients and cooking steps. This generates a few questions and 2 more phone conversations with Lea to get everything straight on Sunday.
Armed with an ingredient list and only Sunday to figure everything out, I start calling the local grocery stores because I need whole carp scaled, de-boned, and ground and the heads, tails, and bones preserved for fish stock.
Basic conversation with all 3 places I could call:
Me, "Do you have carp?"
Them, "No, we never have carp."
Me, "Do you have whole fish?"
Them, "No, not today. If we did it would be trout."
Me, "Can you grind fish for me?"
Them, "No, no one in this area has the ability to do that due to cross contamination issues."
Me, "Do you have Pike?" (It's the other option listed in my Joy of Cooking book.)
Them, "No, we're out of that today."
Luckily, we had invited some friends over for brunch, the Sanborns. We tell this story to them and Robin miraculously solves one problem with, "Oh, I have a meat grinder on my Kitchenaid mixer. I can grind the fish for you." I still don't know what fish to buy, but at least I was temporarily saved from the horrible fate of buying a jar of Gefilte fish from the 5' Kosher section of our Kroger. After call the original 3 stores and 2 more, I'm able to locate 1 store with fish stock. Once at Kroger for the bulk of my shopping, I consult with the butcher as to which fish in the display case is most similar in taste and/or texture to carp or pike. We decided on tilapia. After picking up some fish stock, I head over to Robin's for a quick fish grinding party.
After another hour in my kitchen and two hours for the fish on the stove, I now have homemade Gefilte fish patties that taste pretty good but got a lot more help than originally anticipated to get here.. Nahum was the official taste tester as he's been eating Lea's fish all his life. While he says the texture is definitely different, he gave them his full approval (with a little salt of course).
Click here for a picture of the pot cooling on the back deck last night.
Armed with an ingredient list and only Sunday to figure everything out, I start calling the local grocery stores because I need whole carp scaled, de-boned, and ground and the heads, tails, and bones preserved for fish stock.
Basic conversation with all 3 places I could call:
Me, "Do you have carp?"
Them, "No, we never have carp."
Me, "Do you have whole fish?"
Them, "No, not today. If we did it would be trout."
Me, "Can you grind fish for me?"
Them, "No, no one in this area has the ability to do that due to cross contamination issues."
Me, "Do you have Pike?" (It's the other option listed in my Joy of Cooking book.)
Them, "No, we're out of that today."
Luckily, we had invited some friends over for brunch, the Sanborns. We tell this story to them and Robin miraculously solves one problem with, "Oh, I have a meat grinder on my Kitchenaid mixer. I can grind the fish for you." I still don't know what fish to buy, but at least I was temporarily saved from the horrible fate of buying a jar of Gefilte fish from the 5' Kosher section of our Kroger. After call the original 3 stores and 2 more, I'm able to locate 1 store with fish stock. Once at Kroger for the bulk of my shopping, I consult with the butcher as to which fish in the display case is most similar in taste and/or texture to carp or pike. We decided on tilapia. After picking up some fish stock, I head over to Robin's for a quick fish grinding party.
After another hour in my kitchen and two hours for the fish on the stove, I now have homemade Gefilte fish patties that taste pretty good but got a lot more help than originally anticipated to get here.. Nahum was the official taste tester as he's been eating Lea's fish all his life. While he says the texture is definitely different, he gave them his full approval (with a little salt of course).
Click here for a picture of the pot cooling on the back deck last night.
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