My goal is to survive until Monday's first clinic day by successfully administer all of Shayna's meds and getting unpacked and situated for our 2 month Pittsburgh stay. Meds are currently:
1) Prograf/FK for immunosuppression to prevent rejection, 2 different doses given morning and night with 1/2hr no eating afterward so it absorbs properly (and no gorging before); for life
2) Bactrim: 5ml Monday, Wednesday & Friday to prevent pnemonia; for life
3) Prednisone a steroid to treating current rejection episode, 1-1/2 extremely bitter pills twice a day, as of last night we are currently using Hersey's chocolate syrup to get this down, though she still doesn't like it much. This one is my biggest daily battle and if not done right can hinder other med administrations.
4) Aspirin: once a day for thinning the blood so clots don't form at the artery connection points with the new liver, 1/2 baby tablet crushed in 1/2ml of water
5) Pepcid: once a day 1.3ml sugary serum, to prevent stomach upset, ulcers, etc due to Prednisone
6) Actigal: 5ml twice a day to keep the bile flowing well so the connection points to the new liver don't get clogged up and require reconstructive surgery
7) Florinef: 1/2 tablet once a day to bring down her potassium levels (elevated due to Prograf)
8) Vitamin: 1ml daily, tastes like slightly rotting oranges so not a favorite, to bring her fat soluble levels up to normal since she was defficinct before transplant
9) Mycostatin/Nystatin: 5ml twice a day to prevent thrush in the mouth and digestive track, tastes like bananna cream pie with a little medicine so yummy
10) Sodium Bicabinate: 10ml to correct another electrolyte imbalance created by Prograf, tastes like liquid baking soda so I mix it 1/2&1/2 with cherry syrup but have only managed 1/2 a dose the last 2 days.
So that's 10 meds with 13 daily administrations and a 14th on Mon, Wed & Fri. Over half will be gone by the time we go back to Blacksburg and hopefully some will be backed off on as soon as Monday.
We're enjoying being home with a smiling, growing baby but sad that Grandpa Michael left today. I'm going to have to start doing all the shopping, cooking and laundry for my family as well as not having someone to dump Shayna on for a few moments peace. Time to get organized as check lists always make never ending jobs more satifying.
Merry Christmas!
Friday, December 25, 2009
Wednesday, December 23, 2009
Day 22: "Home"
We're "home" in Squirrel Hill until March, as long as we're not back at the hospital that is. See the "Our Address" post for our address if you're curious. The rest is by Nahum.
This was a long day that was dedicated to the exodus from the hospital. Shayna continues to show high spirit and energy, lots of smiles, even towards total strangers. Paperwork, a class about medications and taking everything from the hospital made for a long day. Shayna is not connected to any IV or tubes and tomorrow will be able to give her a bath. At around 7 PM Michael, Shayna, and Patricia finally arrived to the apartment in Squirrel Hill (25 min drive from the hospital). Nahum was very happy to see them and spent some time with his precious princess. The current challenge is to keep track of and get Shayna to eat all her medicines, some of which are quite nasty tasting. Patricia is doing her usual heroic in trying to make sure that will happen. Shayna's next clinic appointment is on Monday, and we sure hope we can just keep it that way.
This was a long day that was dedicated to the exodus from the hospital. Shayna continues to show high spirit and energy, lots of smiles, even towards total strangers. Paperwork, a class about medications and taking everything from the hospital made for a long day. Shayna is not connected to any IV or tubes and tomorrow will be able to give her a bath. At around 7 PM Michael, Shayna, and Patricia finally arrived to the apartment in Squirrel Hill (25 min drive from the hospital). Nahum was very happy to see them and spent some time with his precious princess. The current challenge is to keep track of and get Shayna to eat all her medicines, some of which are quite nasty tasting. Patricia is doing her usual heroic in trying to make sure that will happen. Shayna's next clinic appointment is on Monday, and we sure hope we can just keep it that way.
Tuesday, December 22, 2009
Thanks!
I wanted to say a great big "THANK YOU!!" for all your support through all this. Reading your comments each day always brightens it.
Happy ChrismaHanuKwanzika!
Happy ChrismaHanuKwanzika!
Day 21: Lower Numbers!
After a relatively peaceful night (to sleep at 9:15 instead of 10:30 with some med time manuvering by Ima and waking every 2 hours instead of 1-1/2), Shayna's 6am labs came back with lower liver numbers so the biopsy was canceled!! AND if things are still good tomorrow, we'll be discharged!!!
Nahum has a minor infection around the incision site. His doc gave him some oral antibiotics and sent him home for rest. (Yay, no hospital for him either!)
Grandpa Michael had helper/adult company duty all day and did wonderful. He even asked some good questions in my last teaching session with Bev. I got Shayna's prescription stack dropped off at the pharmacy after some original insurance trouble (something I'm sure we'll gripe about a few more times before this life is over but hopefully not tomorrow when I have to pick up our prescripts for discharge). Bev usually gets everything setup through CVS's caremark monthly home delivery service and here we got our first "no" from Anthem of Virginia ("[they] don't work with CVS"). I guess I'll just have pharmacy-run day every 4 weeks.
Shayna set another PR at the baby music table while we waited for 4 of the Pittsburgh Steelers to show up for a hospital visit. Here she is taking a break on Grandpa's knee.
Shayna got autographs from Deshea Townsend,
Nahum has a minor infection around the incision site. His doc gave him some oral antibiotics and sent him home for rest. (Yay, no hospital for him either!)
Grandpa Michael had helper/adult company duty all day and did wonderful. He even asked some good questions in my last teaching session with Bev. I got Shayna's prescription stack dropped off at the pharmacy after some original insurance trouble (something I'm sure we'll gripe about a few more times before this life is over but hopefully not tomorrow when I have to pick up our prescripts for discharge). Bev usually gets everything setup through CVS's caremark monthly home delivery service and here we got our first "no" from Anthem of Virginia ("[they] don't work with CVS"). I guess I'll just have pharmacy-run day every 4 weeks.
Shayna set another PR at the baby music table while we waited for 4 of the Pittsburgh Steelers to show up for a hospital visit. Here she is taking a break on Grandpa's knee.
Shayna got autographs from Deshea Townsend,
Trai Essex,
and Doug Legursky.
Day 20: No Staples, More Hosp
Sunday night was another night with little sleep until 6am. After 6am labs, I tucked her in bed next to me and we had a whole 2+ hrs straight of sleep. It was fun waking up next to her too. Her face was about 6" from mine, she opened her eyes, looked straight at me and smiled. Nothing like that sweet smile to wipe away the stress of the night. Grandpa showed up and we did our normal routine of breakfast together in the family kitchen then he gave her sugar solution meds while I showered.
A glum Nahum (Hilary left yesterday) showed up a little after noon. I got to spend some time with him while Shayna slept and grandpa took her down to her ultrasound. Nahum wasn't feeling so hot with an increase in pain Sunday night and a slight fever so called his doc for an appointment today. Shayna's numbers were continuing to not improve (hence the ultrasound) so we were also facing the possibility of another biopsy today and the hospital stay extending into January. They're still not sure exactly what is causing the elevated numbers because, as usual, Shayna is being unusual. The numbers should go up if the rejection or bile duct constriction gets worse or down if things get better. Her numbers are high, but not dramatically, and not moving in either direction so the doctors are puzzled. Is it continued rejections, bile duct constriction, something else or nothing. It was a depressing day all around medically.
On the outside, Shayna continues to get better with each passing hour and much more smiley and laughy than I ever remember her being. She doesn't cry every time a someone enters the room, but waits to see what they're going to do and 60% of the time she doesn't cry at all as long as I or Grandpa are there and explaining things to her. (Even though she's only 10 months, it really seems to help her when I tell her what's going to happen before it does. I wouldn't want someone just grabbing and poking at me with no explanation, and neither does Shayna.) She's getting her little baby bicepts back and I think I see some meat on her thighs too (a big difference in just 2 days). When I pull her from sitting to standing she engages her feet sooner with each time and she pulls her head up when I take her from laying to sitting with no pain what so ever (she had her last dose of Methadone Sunday morning and doesn't need any supplements). She started sleeping on her belly again while in bed with me Monday morning, which means she's taking more than a 30min nap when she sleeps during the day (makes everyone happier). In the afternoon, Shayna got her staples pulled. Grandpa Michael and I got to watch. It didn't look horribly painful, just pinchy and uncomfortable, but of course Shayna did her usually writhing and shreiking. Her belly must be much happier without them.
After our visitors left us, Shayna and I went down to Austin's Playroom on the 6th floor to play. She really likes balls and there was a nobbly rubber one down there to peak her curiosity. She also stood for several seconds at a time at one of those baby music tables (could not have done that 2 days ago). She seemed to love being in a different place, checking out the new toys, and her usual people watching of everyone that came and went as she was smiley and chatty the whole time. So, while it was a medically depressing day, it was a very fun day with the baby. Oh, and her teeth are now semetric as I noticed a 6th tooth poking through this weekend so complete her toothy grin.
A glum Nahum (Hilary left yesterday) showed up a little after noon. I got to spend some time with him while Shayna slept and grandpa took her down to her ultrasound. Nahum wasn't feeling so hot with an increase in pain Sunday night and a slight fever so called his doc for an appointment today. Shayna's numbers were continuing to not improve (hence the ultrasound) so we were also facing the possibility of another biopsy today and the hospital stay extending into January. They're still not sure exactly what is causing the elevated numbers because, as usual, Shayna is being unusual. The numbers should go up if the rejection or bile duct constriction gets worse or down if things get better. Her numbers are high, but not dramatically, and not moving in either direction so the doctors are puzzled. Is it continued rejections, bile duct constriction, something else or nothing. It was a depressing day all around medically.
On the outside, Shayna continues to get better with each passing hour and much more smiley and laughy than I ever remember her being. She doesn't cry every time a someone enters the room, but waits to see what they're going to do and 60% of the time she doesn't cry at all as long as I or Grandpa are there and explaining things to her. (Even though she's only 10 months, it really seems to help her when I tell her what's going to happen before it does. I wouldn't want someone just grabbing and poking at me with no explanation, and neither does Shayna.) She's getting her little baby bicepts back and I think I see some meat on her thighs too (a big difference in just 2 days). When I pull her from sitting to standing she engages her feet sooner with each time and she pulls her head up when I take her from laying to sitting with no pain what so ever (she had her last dose of Methadone Sunday morning and doesn't need any supplements). She started sleeping on her belly again while in bed with me Monday morning, which means she's taking more than a 30min nap when she sleeps during the day (makes everyone happier). In the afternoon, Shayna got her staples pulled. Grandpa Michael and I got to watch. It didn't look horribly painful, just pinchy and uncomfortable, but of course Shayna did her usually writhing and shreiking. Her belly must be much happier without them.
After our visitors left us, Shayna and I went down to Austin's Playroom on the 6th floor to play. She really likes balls and there was a nobbly rubber one down there to peak her curiosity. She also stood for several seconds at a time at one of those baby music tables (could not have done that 2 days ago). She seemed to love being in a different place, checking out the new toys, and her usual people watching of everyone that came and went as she was smiley and chatty the whole time. So, while it was a medically depressing day, it was a very fun day with the baby. Oh, and her teeth are now semetric as I noticed a 6th tooth poking through this weekend so complete her toothy grin.
Sunday, December 20, 2009
Day 19: Feed Me!
(by Nahum)
Shayna is hungry!
The best news of the day is that Shayna's appetite had dramatically increased today. For the first time in months she wants to eat a lot of food, and she is draining her mother of milk. We hope this will continue and that she will begin gaining weight in significant amounts. Medically, she is not totally out of the woods
yet. Her doctors say that some of her blood numbers are a bit high and might indicate a continuation for the mild rejection she experienced. We'll know for sure in the next few days. Even if it is a rejection
episode, they have good tools to treat it.
Nahum Spent three hours this morning with Patricia and Shayna at the hospital and began learning her new meds routine (some 6-8 medications currently, hopefully dwindling to 2 within a year). Shayna was in
great spirits including smiles and laughter. After driving back to the apartment Hilary and Nahum took a 45 minutes walk and watched the kids sliding in the snowy park. Micheal replaced Nahum at the hospital around 12:30 and stayed till about 4:30. Shayna does not suffer from a lack of TLC :-)
Shayna is hungry!
The best news of the day is that Shayna's appetite had dramatically increased today. For the first time in months she wants to eat a lot of food, and she is draining her mother of milk. We hope this will continue and that she will begin gaining weight in significant amounts. Medically, she is not totally out of the woods
yet. Her doctors say that some of her blood numbers are a bit high and might indicate a continuation for the mild rejection she experienced. We'll know for sure in the next few days. Even if it is a rejection
episode, they have good tools to treat it.
Nahum Spent three hours this morning with Patricia and Shayna at the hospital and began learning her new meds routine (some 6-8 medications currently, hopefully dwindling to 2 within a year). Shayna was in
great spirits including smiles and laughter. After driving back to the apartment Hilary and Nahum took a 45 minutes walk and watched the kids sliding in the snowy park. Micheal replaced Nahum at the hospital around 12:30 and stayed till about 4:30. Shayna does not suffer from a lack of TLC :-)
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