Bye Bye

Shayna officially and consistently waves bye-bye.  Every time the nurses or doctors would leave our room I'd say and wave bye-bye.  She caught on yesterday and waved with me every time.  Such a brilliant girl.

We got returned from the alternate universe (aka the hospital) yesterday afternoon.  She didn't lose as much weight this time, only about .25kg instead of the the 1kg last time.  She does seem happier and it feels like we can holder her more easily (the big bulbuous belly makes holding her harder).  The hard time about this last stay is that she didn't adjust.  Normally she's is uptight for the first 2-3 hours then settles in with just a little more fussiness.  This time she would not relax at all so barely slept, which means that Ima slept even less.  She normally wakes up twice between 8pm and 7am, eats, then goes back to sleep.  Monday night she was exhausted at 7pm but I couldn't get her to sleep until 9:30.  Then she woke at midnight and couldn't get back to sleep until 2:30am (see picture).  Woke at 4:30 to eat, then 6:30 for the day.  She usually takes two 2-hour naps but instead took two 45-minute naps, just enough for me the pump and shower the first time then clean up and start packing the 2nd.  Luckily next week she'll be on pain meds that will make her sleep plus I'll have Michael there to help.  (Nahum did take her last night so I got 10hrs to make up for it.)

Today I get to pretend like I'm Leslie (my fulltime mom friend with 3 kids and no outside help).  No outside help means I get to spend a lot more time folding laundry and washing bottles instead of sorting insurance paperwork and hospital bills, uploading pictures, writing emails, and of course my daily Kakuro (I gotta have a little fun).  Plus, I need to redo my hospital suit case which was packed so nicely in preparation for next week.  Time to work while the baby sleeps.

Peeing Like a Race Horse

Shayna gained ~.25kg each week for the last two weeks in water weight in her abdomen (girth is up from 49cm to 54cm) and her albumin levels are down enough to justify another over night hospital stay for 2 albumin transfusions (a protein found in blood).  The greater the ascites (abdomenal fluid retention), the greater the risk of infection as the collecting fluid tends to increase the porosity of the organs which then allows bacteria to seep through.  This can lead to a major infection and serious complications and is the main reason we're in the hospital.  From what I understand, I think the albumin in the blood stream will instigate the vessels to suck the fluid back in to reach a new equilibrium.  She'll get 2 doses of diuretic and pee a lot of the fluid out.  She looks like a characature of humpty dumpty and is moving a little more like a fragile egg too.  Losing this fluid should help a lot and make the last week before transplant much more fun.

New Date: Dec 1st

After much back-and-forth between doctors, coordinators, and us, we have a new LRD Transplant date of Dec. 1st.  (Right smack in the middle of expensive plane ticket time.)  Nahum's coordinator tried to get us to agree to the 10th so I called Shayna's surgeon's cell (yes, a doctor gave us his cell number) to find out exactly why we had to wait so long.  Just a miscomunication which we were able to straighten that out in an hour.

It's amazing how many big-wigs have to be on the same page for something to get on the board.  There's Nahum's surgeon Dr. Humar and Shayna's 2 surgeons Dr. (Kyle) Soltys and Dr. Mazareirgos.  There's the 2 nurse coordinators Nahum's Mimi and Shayna's Kim and the infectious disease expert Dr. Green.  There's Shayna's local GI doc Dr. Hart, Pittsburgh GI doc Dr. Shneider, and new pediatrician Dr. Berry whom we saw yesterday to determine Shayna's current health.  And those are just the people that I get to have contact with.  Then there's all the support staff for each person and facility plus the 2 ORs we'll be using.  Frankly, I'm astonished we got one date canceled and another one scheduled in less than 24 hours of each other.  It took a lot of stress out of the day to have a new day to focus on again.

I just posted some November pics on fb.

 

Cold = No Transplant (Updated)

I just wanted to let everyone know that Shayna has a cold.  As such, they can't do the transplant Thursday.  We'll reschedule for a week or two from now.  We spent all morning with her new pediatrician at his new B-burg office.  They took a few snot samples for cultures.  I talked a little with the Pittsburgh folks.  They'll let us know when they have some date options but we're looking at the beginning of December sometime.  I will post the new date when we know.

While we saw this coming with her cold symptoms starting Friday morning, it was still a hard morning to have it all confirmed.  We've got a lot of stuff up in Pittsburgh thanks to our friend's mother-in-law that waiting for our arrival and an apartment we've got to sign the lease on tomorrow if we want keep it.  We're set to go at any moment now we just have to hurry up and wait.

Our New Home

Everything seems to be falling into place.  Nahum’s massive grant proposal (due this Friday) is coming along nicely.  I found a beautiful 2-bedroom apartment in a lovely neighborhood (it’s the first floor of the house in the picture).  Our transplant assistants Michael and Hilary will be joining us for dinner on Tuesday the 17th and all appointments on the 18th.  I may have found a crib, mattress and bedding set all from the same person who’ll bring it to our home-away-from-home Tuesday evening.  My good friend’s mother-in-law will be in B-burg this weekend from Pittsburgh and has volunteered to drive a bunch of gear up for us so we’ll have everything we need for our Pittsburgh “winter vacation”.  My mom Melinda will be joining us for Thanksgiving (she does a great Thanksgiving spread so that’ll be a real treat).

Our Pittsburgh address will be:
2311 1/2 Eldridge St
 Pittsburgh, PA 15217

I’ve got a lot of packing to do this week (including unpacking some boxes of clothes because Shayna is back in 3-6 month clothing).  It’ll be interesting to see how I pack for 3 months away.  It’ll be a good lesson as we’d like to go to Israel for 3 months in the summer of 2011.  (Nahum would work at the Technion in Haifa.)

Shayna continues to get stronger.  Nahum found her sitting in her crib when he went to get her at 11pm last night (I’ve never seen her even try to pull herself up from any position).  Her legs can really support her whole weight now and when she’s sitting she tries to reach things that are so far away she follows over, a first step on the way to crawling.  She probably still won’t crawl, but it’s delightful seeing her feel so much more comfortable in her body and be so strong that she would even risk reaching that far.

I better get going so we can go for Shayna’s weekly blood draw and Dr. Hart can have some numbers for our last appointment tomorrow.

Game On!

Transplant Day: Thursday November 19, 2009

We are officially fully scheduled for our Living Related Donor Liver Transplant between Nahum and Shayna. We will go to Pittsburg on Tuesday the 17th to meet with my dad Michael and Nahum’s good friend Hillary. (Michael will be taking care of me so I can take care of Shayna and Hillary will take care of Nahum for the first 3 weeks we’re in Pittsburg.) We’ll meet with both Shayna and Nahum’s doctors & surgeons on Wednesday. We’ll say “see you later” to each other. Nahum will check into Montefiore and Shayna will check into Childrens for Wednesday night. Nahum will be opened around 6am Thursday for the beginning of his 6-8hr surgery. If all goes well, Shayna will be opened around 7am for the beginning her 8-12hr surgery.

Nahum is relieved and excited and I’m my usual nervous and anxious. It’s nice to finally have a date for our new beginning, but not knowing what we’ll get on the other side is nerve racking.

I’ll post more this weekend when my brain isn’t so tired and we’ve got more loose ends tied up.

First Halloween

We had a wonderful time on the town last night.  First downtown at a local church and the downtown merchants collecting some candy then to the BCC and the preschool room festivities.  Shayna absolutely loved watching all the kids and parents in costumes.  (Much better than just plain old people.)  She got into a shouting match with her friend Avi about candy and showed off her new muscles to friends by doing some moves I hadn't seen her do.  And she fellover face first from sitting and for the first time didn't cry about it.  Enjoy the pictures.