Liver going in and Nahum awake

Michael once more:  Patricia is still resting.  I'll add a truly unofficial note for those who are following the progress closely.  The below is actually getting to be old news on a fast-paced day but with Patricia being able to rest I don't want to disturb her for any additional info she may have received when we weren't around.

The excised liver portion from Nahum was finally, actually being put in place in Shayna around 2 pm.  That's important but we can't get too excited (at least I won't) until we hear that vein attachments and modifications went well and what type of closure can be done (yes, even that will vary and impact future care and rehab).

Nahum regained consciousness around 3:30pm.  Soon afterward Hillary proved her worth on the Nahum side of this process. Perhaps that story later.  Nahum will probably be quite grateful once he re-awakens (they did knock him out again just for comfort sake).

Immediate update to Peripatetic liver post

Once again it's Michael.  (See the preceding post by clicking "Older Post". It is a much longer piece.)

We just got a text from Hillary, who is the friend doing care at Nahum's surgery site, that Dr. Humar, chief of transplantation at UPMC, called.  The surgery went well.  No blood was needed.  Nahum is still in OR but will soon be in the ICU.

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.