Peripatetic liver

Patricia'a dad, Michael, doing blog duties.  You'll get your favorite blogger back in due course -- once the ransom has been paid.  I think the ransom is 1 hour of rest, which might be harder to come up with than dollars at this point.

Nahum's surgery began about 8:30.  After abdominal entry the surgeon's had to first remove his gall bladder in order to be able to perform the liver portion removal. (That's just another of many sacrifices Nahum is making).  The liver finally began it's 2 mile journey from Montefiore to Children's Hospital, accompanied by one of the surgeons (a two person team).  That does seem odd, perhaps, to not do both operations at the same site but Children's Hospital, due to activity, is now strictly limited to children and since cadaver livers are transported sometimes from Los Angeles to Pittsburgh, the 2 mile journey for Nahum's peripatetic liver is quite comparably less.

Both patients have been reported as stable. We haven't heard yet how close to returning to consciousness Nahum is.  But that could still be a while.  The closing process itself is quite important and not to be rushed.

Shayna's surgeons were actually quite delightful to speak with yesterday evening.  Energetic and willing to explain and draw diagrams on a whiteboard in the room. A real benefit for the curious brains of the other adults in the room. :-)  You might wish to know that the most technical part of the operation with Shayna is the stitching of a cadaver vein into place (yes, there is another donor besides Nahum in this process).  The surgeon had already examined that vein as of yesterday evening and felt that it should prove to be a good match for Shayna's veins.

We will now enjoy taking Patricia out for a walk.  There are some very pleasant places to be on this cold and windy day.

In the OR

Nahum entered the OR at 7:15 this morning and I walked Shayna down to her's at 8am.  I'm eating breakfast after a night with 3hrs of interupted sleep and lots of baby holding.  The night was nothing like what I had expected but wasn't as bad as I thought it would be.

Nahum, Hilary, Michael, and Melinda left me around 6:30pm so Shayna could get a nap.  We rested for an hour, then ate, played, and watched tv until the Thymoglobulin started around 9:30 (the first anti-rejection defense).  The thymo requires full monitoring so she had 3 additional cables to the iv administering the thymo.  It was hard for her to get comfortable so she spent over half the night resting in my arms.  One of the side effects is fever and Shayna's got up to 102F (38.9C), which I think actually made the morning easier.  Instead of screaming and writhing for food she slept fitfully in my arms.

I'm supposed to get 3 calls through out the day.  Right now they're doing all the prep work.  With the iv from yesterday they put her to sleep, then they have to put in the central line and another arm line (taking out the original iv afterwards), she gets a breathing tube, etc (I don't remember everything they told me but it's a lot).  They'll call when they actually begin the operation on her, when they get the liver sown in, and when she ready to come out.

I'm going to go up to my room and sleep now.  Hopefully I can get my parents to post something next.

In the Hospital

We're in the hospital trying to sleep through beeping machines and lots of attached cables.  These are the details they don't tell you about.  Nahum will check into his hospital at 5am and will be under the knife at 7am.  They'll take Shayna between 8 & 9 at which time I'll be heading to bed for some sleep.

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.