Day 2

Shayna: Minor excitement this morning as her blood O2 levels went down due to her breathing tube getting slightly out of place and some fluid in her lungs.  Breathing tube was fixed and they've started her on diuretics both to get the fluid out of her lungs and deflate the rest of her in preparation for a full closing 48-72hrs from now.  Her white blood cell (WBC) count is great (no infections), her liver is functioning well (total bilirubin has come down from 12 before to 5.9 this morning), and her blood pressure is staying nice an "high" with only occasional light assistance (they want it "high" because the veins in Nahum's liver are used to it being at adult strength not pediatric so it's some where between).  Melinda is with her right now.

MandM: Made a great soup for us last night.  So nice to have healthy, tasty food again.

Nahum: Sat in a chair for the first time today.  Hilary said he clung to the chair for dear life but needs to be doing it.  The sooner he's up and moving, the quicker he gets better and the better he stays.  It's also the first step for him seeing Shayna again.  He's also been cleared for food again so Hilary brought him some other broth from the soup plus he gets to partake in more great hospital food besides jello.  Hopefully MandM can keep cooking so he doesn't have to eat much of the hospital slop.  He's having a rough time with the pain medication side effects, which is typical of Nahum's body but gives him excrusiating headaches, so he's not up for visitors today. Michael was going to go but will now go tomorrow.  Hilary is still keeping track of him from the start of visiting hours to whenever she's kicked out after visiting hours are over.

Me: I'm doing laundry and filling out the November photo album on facebook.

This pic is from Thanksgiving day with a link to the rest of the album below.

 

November Album

Our Address

Since people have been asking:

Our address is

2311 1/2 Eldridge St.
Pittsburgh, PA  15217

Don't forget the 1/2.

24hrs

It's been 24hrs with a new liver and Nahum moved out of the TICU with the remaining piece of his.  Shayna's getting a little blood right now since all the fluids they've been pushing today have made her's a little thin.  She continues to hold her own; though, I keep forgetting to ask the doctors what her new liver is doing.  Hopefully I can get a little technical tomorrow.

This is the first time we saw her around 8pm last night.  She's a little puffy but otherwise looking good.

Here's a picture of Shayna with last night's nurse Michael who "was sorry he didn't put a hairbow in her hair" after he cleaned her up but he'd "left the bows in his locker by mistake."  She got some loving along with her meds while I got some sleep.

Day 1

Both Nahum and Shayna are doing well.  With Shayna unconscious, I was able to visit Nahum today which was a pleasant surprise for both of us.  Melinda and I walked from Children's to Montefiore (about 2.3mi so we got our exercise for the day and some good time together) while Michael spent some time with Shayna.  Nahum was just having his first food by mouth when I got there, some jello and apple juice, and was able to talk with me a little.  He says it's not that painful, which is saying a lot for him, but it really hurts when he coughs.  They'll be moving him from the TICU (transplant ICU) today as soon as they get a room in the hospital open.  Hilary is proving her worth in gold by not only keeping after the staff to keep Nahum comfortable but also making sure Nahum follows his doctors' instruction (like keeping his nose oxygen tubing in place).  I showed him some pictures of Shayna so he got to see and not just hear that his princess is doing well.

Shayna continues to be weaned down on her various medications and fully off of one late this morning.  She is doing beautifully.  Her nurse like to keep her door shut since Shayna has show more sensitivity to noise and talking (by the heart rate and blood pressure numbers).  It makes me feel a lot better seeing someone be so observant to Shayna's sensitivity (she is normally a sensitive, serious little girl).  I got to watch them change the dressing on her open belly.  Pretty cool to actually see her new liver inside her.  I haven't gotten to see the old one yet.  I still hope to but keep forgetting to ask when the doctors come by.

I'm going to go hold my daughters hand again. 

Closing

I (Patricia) was called at 6:15 to let me know they were closing Shayna.  The nurse estimated it would be about an hour or so until they finished closing.  There's still more to do in the OR after they close but we should hear from one of her surgeons at that time.  We (Michael, Melinda, and I) are waiting in the family waiting  room for the first time today.

I've been trying to relax and catch up on some of my missed sleep today.  I spoiled myself with french toast for breakfast (Children's Hospitals actually have decent/good food) and some Whole Food buffet for lunch/dinner, took 2-1/2 naps at my Ronald McDonald room (the building is attached to the hospital), and enjoyed chatting and joking with my folks.  (I like hanging out with them because we'll do things like take the stairs down from our 11th floor Ronald McDonald room.)

It's 7pm and she's now in the PICU where they're setting up all her various connecting wires and tubes. We can see her in about 30minutes.  Her surgeon Dr. Soltys just came to talk with us.  The surgery went well.  They ended up not needing the cataveric portal vein as her vein was only clotted off at the top.   They decided not to close her (they could have closed her skin but not her muscles) since the muscles were so close to being able to be closed so there is a mesh covering over her belly opening keeping everything in.  That'll get changed and cinched up every day until the organ swelling goes down enough that the abdominal wall can be fully closed.  They expect to be able to do that some time in the next 5 days (this is common).  In the mean time she will be fully unconcious with a breathing tube (this means I get to sleep the whole night through so she'll get a well rested mother when she wakes up).  She'll be getting iv nutrients while we wait.

It feels weird.  Just another hurry up and wait.  There won't be a whole lot to do in the next few days for Shayna but I still want someone with her at all times.  That may change as I learn more about the PICU sittuation.  It's a 1:1 nurse ratio so she'll get plenty of attention.  We won't be able to hold her, just sit next to her, stroke her hair, and hold her hands.

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.