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.

Liver Pic Password

For those of you with a strong stomach and a curious nature, I've posted some password protected pictures of Shayna.  In here you'll see her open stomach, its dressing change, more Shayna on ventilator pictures, and any other pics I think the general public couldn't handle with the normal daily pics I put on FB. 

Password: SeeMyLiver

The night went well.  Her O2 levels are up and strong, there's no fluid in her lungs, and she's deflating a bit.  I'll post more details at the end of the day.

Missing Shayna

It's getting harder and harder just playing with an inanimate doll.  The nurses and I personify her like Nahum and I did when she was still in the womb.  I like being with her, just holding her hand or massaging her legs but I want to play with her again, see her pick up her basketball, or just hold her.  The doctors think it'll probably be Sunday when they close her if her deflation goes according to plan.  I'll be able to hold her and feed her and she'll be able to interact with life again soon enough, but the waiting is hard.

I guess I'll just have to enjoy the full nights of sleep that I get and the fact that I have so much control over my time.  I better use it to go for a nice long walk tomorrow in the "park" next to the hospital.

I forgot to share her lastest learning experience.  She can drink out of a sippy cup as of the wee morning hours of Tuesday  Dec 1.  I stopped feeding her just after midnight, but (after talking with a certain doctor back home) new that water wouldn't do any harm or cause as much trouble if I was caught so contiued to give that up to 5am.  What a life saver that was!  I ask her, "do you want some water?" and she'd open her mouth like before.  I'd squirt some in then take the spout out till she'd opened her mouth again.  She'd been clamping down on the mouth piece so I decided to leave it in.  Low and behold, she started sucking water out.  She'd drink then settle against my chest for some more sleeping.  Just having that helped settle her a lot.

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.

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.