Day 7

It's been 1 week!  We'll probably celebrate Liver Day (Dec 1) like we will her birthday.  Even when she gets some siblings, I bet it'll be hard not to spoil her as I am excited about the possibilities we now have of a "normal" life for her.
9am
While she is breathing well on her own, she failed her first blood gas check at 8am as she was mad.  They'll come back to check again at noon.  About 0.4ml of blood tells her blood pH (7.35-7.45) and O2 (over 100) an CO2 (35-45) levels.  She did look at me when I walked in and spoke to her this morning.
10am
She's started her 2nd 2-hr breathing on her own test and continues to look relaxed and calm after the breath assistance was turned off on her ventilator.
11:15am
She's off the ventilator and breathing well on her own but still getting a little extra O2 in her face to help the process.

5pm
So it's been a good day.  Nahum visited again, Michael spent a lot of time with us, and Shayna's getting grabby and interactive again.  She spent some time playing (in a half drugged stuper) with her nurse, grabbing Jess' hand-held computer and exploring her face.  Shayna's only need one extra dose of pain meds today and I'm trying to learn from Nahum and Hilary how to keep her comfortable based on what Nahum like and didn't like just after his operation.  We got some special visitors.  The Pittsburgh Penguin's goalies brought presents (a popup toy and a signed puck).  I'm hoping to get some more tubes out this evening.  They've been waiting for bowel sounds but not hearing much to pull some so Shayna pooped just to thoroughly prove that something was going on.  It's an exciting life we need.  The more she can do the sooner she can eat too.

Shayna with Goalies  Marc-Andre Fleury and Brent Johnson.

I also added some pictures to my pic site.

"SeeMyLiver"

Breathing

She's on a trial run of breathing on her own since 6am.  We'll check blood gasses at 8am.  Tube still in and will help after 8am so she doesn't get tired as the goal is to extubate her around 10-11am when the docs are done rounding.  The breathing curve on the machine looks good as do her in & out pressures.

Day 6: She's Closed!

Shayna's abdomen is closed and the paralytic was just turned off (3:45pm)!  Michael and I are now staring at her, waiting for movement.  It may take a while since she was give a narcotic dose just before the paralytic was turned off.  I'm gonna go stare a while more.

Day 5 1/2

They'll be closing Shayna this afternoon and taking her off the paralytic right after.  She'll start waking up over the following 12-24hrs.  I'm happy to be well rested.  It took the full week of 8hrs a night to get there but I should be starting the hard part of my hospital stay with a good reserve as I'll be living in Shayna's room from now on.  This means that I won't be able to blog daily as I'll be spending much of Shayna's sleeping hours resting myself or showering and taking care of other daily necessities (like eating as I'm not allowed "open food containers" in the PICU).

Shayna is doing well.  No more fevers and she looks less and less like the Pillbury Dough Boy and more like scrawny Shayna with each day.  Her bilirubin is finally on the decline again (total had been 5.9, 8.6, and 10.7 over the last 3 days) at 8.0 this morning.  Her surgeon attributed the increase to swelling at the intestine-liver connection site (as it was a live donor and the live donor needed to keep his bile ducts a Kasai Procedure was performed).  As her ultra sounds showed good blood flow through the liver and all her other liver numbers continue to come down with each day, they also knew the liver was functioning well.  

We enjoyed a visit from Nahum yesterday.  I got to push my first wheel chair too, as he still has a long way to go before he regains his stamina.  He looked like me the first time I saw her after transplant.  In awe but not sure how to handle/touch her with all the tubes and wires coming off.  Hilary came back briefly after Nahum (we're only allowed 2 people at a time, me + guest, so the waiting room is heavily used).  She said Shayna sure looks cute, which is nice to hear since she's tubed up too.

This time tomorrow I might be feeding my baby.

Day 4 1/2

     Nahum arrived at home late yesterday afternoon.  The 1928 duplex we've rented was, of course, built long before the ADA (Americans with Disability Act), so Nahum had a good challenge climbing the 2-dozen or so steps to the front door.  Fortunately, the current owners completely redid the front concrete work so at least the steps are even and secure.  Michael remembers that regaining stamina to do normal, light activities after his own mid-August surgery so he could relate well to what Nahum faced when exiting the car and seeing all the steps again.

     Hilary continues to be extraordinarily dutiful in support of Nahum.  She went shopping for special items he told her he liked and cranked up the heat in the duplex.  She cooked a dinner of tortellini (a fresh pasta style brand) and broccoli with spaghetti sauce. Nahum was very glad to have a favorite meal at home.  She had also brought the dvd "Stripes" so she and Nahum were able to watch that and relax prior to Hilary leaving for an evening at the Pittsburgh Symphony with the in-laws of my good friend from Blacksburg.

     Normally, Melinda and Michael would have swooned over being able to attend a major symphony concert.  Saturday evening, though, was Melinda's last evening in Pittsburgh so the two love-sick lovebirds stayed home to moan together over their coming departure.  Michael made her take all her stuff with her though she accused him of nefarious reasons for doing so.

     Michael may get to have his first play date today.  One of the local triathlon club officers has invited him out for a run at 3pm today, along with another couple.  And he has signed up for the Jingle Bell Run next Saturday.  So he will finally see Heinz Field, the area of the 5K.

     I spent my usual evening with Shayna and then slept 8 straight hours at the Ronald McDonald unit, after enjoying a repast of Giant Eagle broiled chicken.  (Giant Eagle is the major grocery chain in this area -- no Krogers/King Soopers or Safeways).  This morning has been spent talking with and enjoying Rose, a nurse who is very easy to be around and helps me be involved in various ways (I helped administer "sprinkles" to Shayna.  That's how they call the Prograf, anti-rejection medicine, so the kids that cannot swallow pills yet will think it's fun and swallow the powder sprinkled out from the capsule.)  It's nice to be able to help out a little so I can feel like I'm actively participating in Shayna's care.  I also washed her hair this morning.  The hospital has a special no-rinse shampoo, which amazed me by actually working well.  Now she'll be beautiful for Aba's visit this afternoon.  I am getting quite used to handling her with all the various tubes coming out of her and into equipment around her bed. It's been nice to have such a slow learning curve.  I couldn't imagine having to handle her awake with all the tubes and wires, another gift of a late closing.

Day 4

Nahum is home!! (to Eldridge St. that is)  Hilary took him home this afternoon where he can sleep in beep-free peace tonight.  He might even feel up to visiting Shayna tomorrow.

On a sadder note, Melinda catches her plane home tomorrow morning.  I don't know how she and Michael are going to get along without each other, but we sure appreciate the sacrifice out here.  Having another set of hands will make life much nicer for me (not to mention I get company).

Shayna's been running a bit of a low grade fever today so they've started her on an anti-fungal med, along with her 3 antibiotics, just to be safe since she has no immune system.  She was breathing on her own a bit today.  The ventilator is still going since she's paralyzed but she was taking some extra breaths on her own so you can tell she's not fully paralyzed.  No distress with it, so totally normal and okay.  Shayna's got an OR booked for Monday morning so it'll be another 2 days before I can hold her again.  While I'm really looking forward to that, my work load with also quadruple.  I'll have to start sleeping in the hospital so no more 10hr sleeps like last night.

I went for a walk with Melinda (instead of download pics for the blog, sorry).  It's snowy in Pittsburgh, just enough to dust the trees and grass.  It was a little chilly but beautiful to walk around the old "park" next to the hospital (so nice not to have to walk next to the noisy streets).

Day 3

Not a whole lot to report today. Shayna's liver numbers keep coming down along with her bilirubin and coagulation/clotting times. This all means that her new liver is functioning well. She's well out of the woods for acute rejection, which is basically a instantaneous, or near instantaneous, rejection of the new organ. We are firmly in the battle we will fight for the rest of her life of long term rejection.

So I was a little misinformed this morning. There is still some fluid in her right lung as of this morning but it looked much better than yesterday (I saw the xrays). She's still puffy so they've added a new diuretic (I'm learning all the new drugs' names but it's a slow steady process and I don't remember that one just yet) and more albumin.
(1pm...3pm)
I just watched her get her dressing changed again. The doc's are confident they'll be able to close her fully Sunday or Monday when they go to do that.

Michael and I visited Nahum around noon today. He tires easily but is doing awesome otherwise. He's probably had all his iv's removed by this time so is totally off the morphine button. After that he got to take his first shower, for which Hilary was grateful. He can move adeptly from bed to chair and back again and even cross his legs. It was exactly a week ago he did his last 90 minute run. Today he took his first walk for about 300' and declared it was just as difficult as that run. His doctors are pleased with his progress and say much of it is due to his getting into good shape before hand. What a trouper.

I continue to enjoy home cooked meals by Michael. He brought his favorite cookbook with him and has been picking meals out for us. He and Melinda do all the shopping and chopping together then visit me with yummy food that also makes my body feel good when I eat it. I don't know what we'll do when Melinda leaves, besides cry.  She's on duty as guardian ad litem for some time in Dec plus she's got some court dates.

I'm enjoying a quite evening now with my angel.  She's got her blue flower hat on again.  I'll take a picture for tomorrow.