Day 30: "warm" birthday

 Labs and clinic went well, but we still need snow tires.  Shayna's liver numbers continue to drop so the Prednisone (steroid used to combat rejection) was decreased again and I don't have to do any more sodium bicarbonate (liquid baking soda with cherry syrup) because her CO2 levels are at the low end of normal.  They're still struggling to find a solution to Shayna's high blood pressure and my in ability to check it, but at least they're working hard to get it solved.  I give meds for that in the morning only since it's high but we can't guarantee that it'll be high later and giving while low is really dangerous.  Once she's off the prednisone, we shouldn't have the high blood pressure issue.

It was relatively warm today (upper 30sF) so we enjoyed a slushy walk to Barns and Noble and the Kosher grocery for some unique items (more yummy Bamba).  Shayna continues to get more energetic, feisty and interactive with each day.  After another short jant to find a mailbox (just her and I) this evening, we settled in for some make Shayna giggle time.  It is so wonderful to have a healthy, happy baby.  We got 2 skype sessions in with the 2 sets of grandparents that have the capability (Colorado and Israel).  They all ooed and ahhed over her and Michael about cried again because he had to leave Shayna to go back to Melinda.

I turned 29 today also.  It's an anticlimactic number to the year we've had.  I feel much more like I've earned 30.  I guess that just means it won't be a big deal with it comes.  It was a good day and Shayna discovered snow.

Day 27: Shayna nafal

More of the same: good times with a baby and a little shopping by myself (for baby/kid stuff of course).  It was kinda of hard because I can't buy anymore cute baby clothes since I've already got her too much stuff.  We got out for a family walk to the grocery and fruit shops.  Nahum pushed the stroller the whole time so he is doing much better.  Shayna fell out of her stroller and cut her lip on the sidewalk due to a parental lapse in judgment by both of us but was smiling within 5 minutes.  Lesson: Always buckle your child in even when she's been stuffed into the stroller because of her ginormous snowsuit or she might just slip out when the stroller's not even moving.  Meds are getting easier.  She's even learning to take her jello shots without as much fuss.  It's freezing here with wind and snow still on the ground.  I like winter but I prefer the Colorado variety, a few cold days followed by some warm days.  This below freezing all the time is going to make me climb the walls.  At least next week the kids will be back in school so Shayna and I can venture out to the more attractive sites (like the aquarium).

I put 4 new pictures at the end of the December FB album.

Day 26: Shayna the Gerbil

Shayna loves most of her meds so much all I have to do is hold the syringe near her and she comes to it, I push some meds into her mouth, she sits back up, swallows, then leans in to put the syringe in her mouth to get more.  I made the mistake tonight of grabbing her meds while she was eating dinner (Aba was working the spoon).  She saw me and refused to take another bite of food (which happened to be a delicious Blacksburg special of Shlomo's sweet potatoes and the Kornbliths fried turkey pureed in the blender).

Our first day of labs and clinic was exciting as I was out scraping the ice off the car at 6:30 this morning just before I yanked a sleeping baby out of bed to stuff her in a cold car.  She was not to happy to start with but settled in for the ride.  We got there early enough that we were 2nd for draws this morning which got most of our labs back for our clinic appointment (usually doesn't happen) so I got to see them (and even get a copy).  All her liver numbers were still on the way down so I get to decrease her Prednisone (taken as "jello shots" because of the way it tastes with jello like too much vodka had been put in the jello shot).  Later we also got word that her FK/Prograf levels were at 13.7 and with the liver numbers down the goal is now 12 so we're at 1mg morning and night (down from 1.5mg in the morning).  Also, if the liver numbers continue down on Thursday, we'll go to once a week visits.  (If they don't, she'll need a blood transfusion because her little body can't handle 2 draws a week.)

We had some excitement after our 2nd Kornblith visit as cobblestone streets get very slick when it's freezing out and snow is covering the road.  Nick and I had to help Nahum's car uphill away from Judy's house by pushing.  After Nahum slid/crashed into the curb a block from our house while trying to park (only cracked the bumper) we backed into the alley where we have a garage to park in and got stuck again.  With one foot on a light post, since the ground provided no traction, I got to push Nahum's car again to get it into the alley.  We were so thankful we didn't slide into another car on those cobblestone roads and have a garage (albeit behind the house across the street) to park in as there was no way Nahum's gripless tires could have gotten us into a spot remotely near our house.  Snow tires here we come.

All in all it was a good day with Shayna laughing more and more.  She is such a fun baby.  She's back to the baby we brought home from the hospital that only complains for food, sleep or a diaper change and is happy the rest of the time (expect for jello shots).  She's getting so much stronger with each day that I bet she'll be crawling by the end of January.

Day 25: Good Friends

We got a wonderful tiny visit from the Alkahers yesterday.  They were on they're way through to visit family elsewhere but dropped off some of Shlomo's yummy food.  Now we can eat well again and I don't have to cook just yet.  Today we're going over to Judy's house to visit with the Kornbliths who are up from Blacksburg to spent a couple days with Grandma Judy.

I had help start today and finally got the Rondald McDonald room turned over.  I had gone over the clean yesterday but forgot all my keys.  Hopefully now I'll be able to start jogging again in the great parks near our house, explore the stores in the area for grocery deals, and cook fun, healthy meals for my family without time stress.  Shayna took to Kate right way.  She's such a happy baby these days that I think getting her to like any sitter will be easy.  She doesn't even scream at me when she hungry, unless I really let her go of course.

We're doing great right now.  Nahum is feeling better and started walking again yesterday.  He only walks for little distances and still naps a lot, but the fact that he wants to get out of the house is great improvement over the first couple days I was home.  Shayna's meds are getting easier.  The Hersey's only worked once.  Friday was a near Prednisone (anti-rejection, steriod) failure.  I was lucky if I got half of each dose in her so I spent some stressed time Saturday morning getting a suspension form and getting some advice from our post-transplant nurse coordinator Alice.  The pharmacist was amazing, staying open an extra 1/2 hour just to help me.  He got rid of 1/2 the horrible bitter after taste with his compounding pharmacist's recipe.  Alice actually had helpful advice: Jello.  I mixed the 1ml of Prednisone with .5ml water and 3/8tsp sugary, jello powder to get a jello-prednisone slug.  It halved the bitterness again so while Shayna still doesn't like it she does swallow more willingly and drools much less of it out.

Off to see the Kornbliths!

Day 23 1/2

My goal is to survive until Monday's first clinic day by successfully administer all of Shayna's meds and getting unpacked and situated for our 2 month Pittsburgh stay.  Meds are currently:

1) Prograf/FK for immunosuppression to prevent rejection, 2 different doses given morning and night with 1/2hr no eating afterward so it absorbs properly (and no gorging before); for life
2) Bactrim: 5ml Monday, Wednesday & Friday to prevent pnemonia; for life
3) Prednisone a steroid to treating current rejection episode, 1-1/2 extremely bitter pills twice a day, as of last night we are currently using Hersey's chocolate syrup to get this down, though she still doesn't like it much.  This one is my biggest daily battle and if not done right can hinder other med administrations.
4) Aspirin: once a day for thinning the blood so clots don't form at the artery connection points with the new liver, 1/2 baby tablet crushed in 1/2ml of water
5) Pepcid: once a day 1.3ml sugary serum, to prevent stomach upset, ulcers, etc due to Prednisone
6) Actigal: 5ml twice a day to keep the bile flowing well so the connection points to the new liver don't get clogged up and require reconstructive surgery
7) Florinef: 1/2 tablet once a day to bring down her potassium levels (elevated due to Prograf)
8) Vitamin: 1ml daily, tastes like slightly rotting oranges so not a favorite, to bring her fat soluble levels up to normal since she was defficinct before transplant
9) Mycostatin/Nystatin: 5ml twice a day to prevent thrush in the mouth and digestive track, tastes like bananna cream pie with a little medicine so yummy
10) Sodium Bicabinate: 10ml to correct another electrolyte imbalance created by Prograf, tastes like liquid baking soda so I mix it 1/2&1/2 with cherry syrup but have only managed 1/2 a dose the last 2 days.

So that's 10 meds with 13 daily administrations and a 14th on Mon, Wed & Fri.  Over half will be gone by the time we go back to Blacksburg and hopefully some will be backed off on as soon as Monday.

We're enjoying being home with a smiling, growing baby but sad that Grandpa Michael left today.  I'm going to have to start doing all the shopping, cooking and laundry for my family as well as not having someone to dump Shayna on for a few moments peace.  Time to get organized as check lists always make never ending jobs more satifying.

Merry Christmas!

Day 22: "Home"

We're "home" in Squirrel Hill until March, as long as we're not back at the hospital that is.  See the "Our Address" post for our address if you're curious.  The rest is by Nahum.

   This was a long day that was dedicated to the exodus from the hospital.  Shayna continues to show high spirit and energy, lots of smiles, even towards total strangers. Paperwork, a class about medications and taking everything from the hospital made for a long day.  Shayna is not connected to any IV or tubes and tomorrow will be able to give her a bath.  At around 7 PM Michael, Shayna, and Patricia finally arrived to the apartment in Squirrel Hill (25 min drive from the hospital).  Nahum was very happy to see them and spent some time with his precious princess.  The current challenge is to keep track of and get Shayna to eat all her medicines, some of which are quite nasty tasting.  Patricia is doing her usual heroic in trying to make sure that will happen.  Shayna's next clinic appointment is on Monday, and we sure hope we can just keep it that way.

Thanks!

I wanted to say a great big "THANK YOU!!" for all your support through all this.  Reading your comments each day always brightens it.

Happy ChrismaHanuKwanzika!

Day 21: Lower Numbers!

After a relatively peaceful night (to sleep at 9:15 instead of 10:30 with some med time manuvering by Ima and waking every 2 hours instead of 1-1/2), Shayna's 6am labs came back with lower liver numbers so the biopsy was canceled!!  AND if things are still good tomorrow, we'll be discharged!!!

Nahum has a minor infection around the incision site.  His doc gave him some oral antibiotics and sent him home for rest.  (Yay, no hospital for him either!)

Grandpa Michael had helper/adult company duty all day and did wonderful.  He even asked some good questions in my last teaching session with Bev.  I got Shayna's prescription stack dropped off at the pharmacy after some original insurance trouble (something I'm sure we'll gripe about a few more times before this life is over but hopefully not tomorrow when I have to pick up our prescripts for discharge).  Bev usually gets everything setup through CVS's caremark monthly home delivery service and here we got our first "no" from Anthem of Virginia ("[they] don't work with CVS").  I guess I'll just have pharmacy-run day every 4 weeks.

Shayna set another PR at the baby music table while we waited for 4 of the Pittsburgh Steelers to show up for a hospital visit.  Here she is taking a break on Grandpa's knee.

Shayna got autographs from Deshea Townsend,

Trai  Essex,

and Doug Legursky. 

Day 20: No Staples, More Hosp

Sunday night was another night with little sleep until 6am.  After 6am labs, I tucked her in bed next to me and we had a whole 2+ hrs straight of sleep.  It was fun waking up next to her too.  Her face was about 6" from mine, she opened her eyes, looked straight at me and smiled.  Nothing like that sweet smile to wipe away the stress of the night.  Grandpa showed up and we did our normal routine of breakfast together in the family kitchen then he gave her sugar solution meds while I showered.

A glum Nahum (Hilary left yesterday) showed up a little after noon.  I got to spend some time with him while Shayna slept and grandpa took her down to her ultrasound.  Nahum wasn't feeling so hot with an increase in pain Sunday night and a slight fever so called his doc for an appointment today.  Shayna's numbers were continuing to not improve (hence the ultrasound) so we were also facing the possibility of another biopsy today and the hospital stay extending into January.  They're still not sure exactly what is causing the elevated numbers because, as usual, Shayna is being unusual.  The numbers should go up if the rejection or bile duct constriction gets worse or down if things get better.  Her numbers are high, but not dramatically, and not moving in either direction so the doctors are puzzled.  Is it continued rejections, bile duct constriction, something else or nothing.  It was a depressing day all around medically.

On the outside, Shayna continues to get better with each passing hour and much more smiley and laughy than I ever remember her being.  She doesn't cry every time a someone enters the room, but waits to see what they're going to do and 60% of the time she doesn't cry at all as long as I or Grandpa are there and explaining things to her.  (Even though she's only 10 months, it really seems to help her when I tell her what's going to happen before it does.  I wouldn't want someone just grabbing and poking at me with no explanation, and neither does Shayna.)  She's getting her little baby bicepts back and I think I see some meat on her thighs too (a big difference in just 2 days).  When I pull her from sitting to standing she engages her feet sooner with each time and she pulls her head up when I take her from laying to sitting with no pain what so ever (she had her last dose of Methadone Sunday morning and doesn't need any supplements).  She started sleeping on her belly again while in bed with me Monday morning, which means she's taking more than a 30min nap when she sleeps during the day (makes everyone happier).  In the afternoon, Shayna got her staples pulled.  Grandpa Michael and I got to watch.  It didn't look horribly painful, just pinchy and uncomfortable, but of course Shayna did her usually writhing and shreiking.  Her belly must be much happier without them.

After our visitors left us, Shayna and I went down to Austin's Playroom on the 6th floor to play.  She really likes balls and there was a nobbly rubber one down there to peak her curiosity.   She also stood for several seconds at a time at one of those baby music tables (could not have done that 2 days ago).  She seemed to love being in a different place, checking out the new toys, and her usual people watching of everyone that came and went as she was smiley and chatty the whole time.  So, while it was a medically depressing day, it was a very fun day with the baby.  Oh, and her teeth are now semetric as I noticed a 6th tooth poking through this weekend so complete her toothy grin.

Day 19: Feed Me!

(by Nahum)

Shayna is hungry!

The best news of the day is that Shayna's appetite had dramatically increased today.  For the first time in months she wants to eat a lot of food, and she is draining her mother of milk. We hope this will continue and that she will begin gaining weight in significant amounts.  Medically, she is not totally out of the woods
yet. Her doctors say that some of her blood numbers are a bit high and might indicate a continuation for the mild rejection she experienced.  We'll know for sure in the next few days.  Even if it is a rejection
episode, they have good tools to treat it.
 
Nahum Spent three hours this morning with Patricia and Shayna at the hospital and began learning her new meds routine (some 6-8 medications currently, hopefully dwindling to 2 within a year).  Shayna was in
great spirits including smiles and laughter.  After driving back to the apartment Hilary and Nahum  took a 45 minutes walk and watched the kids sliding in the snowy park.  Micheal replaced Nahum at the hospital around 12:30 and stayed till about 4:30.  Shayna does not suffer from a lack of TLC :-)

Day 18: Lazy and uneventful

Last night was evenful enough as Shayna doesn't like to sleep in her bed anymore so spent half the night sleeping in mine.  Luckily, that's fairly easy and hasn't been frowned on by any nurses so I'll probably do it again tonight if she wakes before midnight.

The day was fairly lazy and nice.  Spent the morning with Michael then a nice mid-day nap before Hilary and Nahum came by.  Hilary got to shovel lots of snow this morning as we got 3"-4" in the night.  (B-burg got ~15" so there wouldn't have been any shoveling there, just some holing up for the weekend if we were home.)  During Shayna's naps Hilary, Nahum and I play Triominos.  Shayna smiled at 2 new people & is now playing in bed in her custom onesie.

 

I had to post a liver pic because it was just so amazing.  If you stand, the side facing up in the picture would be facing the floor in your body.  The gray one is a normal, drained 1-yr-olds liver.  The green one is Shayna's.  It weighed over 1/2kg, more than twice the normal weight and really was rock hard.  To orient correctly, one of the livers needs to be rotated 180deg.  There's also some depth missing from each as slices have been taken from them.  The will be more on the website with a password soon.

Day 17: A good day

I don't remember much about yesterday so we'll just have to skip to today and see if I remember anything as I type.

It was a rough night as Shayna woke every 2 hours and wanted to eat; sometimes well, others just comfort snacks.  It's good she's eating but she's turned into a really light sleeper too.  The hospital nerves have finally taken over.  Poor baby.

We did have a great morning with a breakfast date with Michael.  He got up early to make flaxseed, blueberry pancakes and they were delicious.  He brought everything to the hospital and the 3 of us sat in the family pantry (area with fridge, cabinets, sink and table for keeping our outside food).  Shayna sat on the table and crushed the pancake piece I let her hold into many little crumbs but loved the little pieces I popped in her mouth.  We had apple slices and thawed frozen strawberries in their juices to put on the pancakes so Shayna got to eat her first strawberries too.  (She does a really good job gumming things instead of choking on them.  The few things that do cause trouble she easily hacks to the front for more gumming.  It makes experimenting with new foods and textures less worrisome.)

Nahum and I had our 2nd teaching session for post-transplant Shayna care through life.  It started yesterday and we'll have our 3rd, and last, on Monday.  We learned things like Shayna can't have grapefruit or pomegranate because the chemicals in them interfere with prograf absorption.  We are taught about all the drugs she is on or could be on both to prevent rejection as well as treat the side effects of the rejection drugs.  We learned what to do about colds, the flu and other viruses, what to call the about and when.  I'm beginning to say, "thank goodness it's only a liver transplant," as we learn more about the complications with things like small intestine transplants and all the other possible things that can go wrong.  Michael and Hilary babysat while Nahum and I learned and Shayna was perfectly happy touring the hospital with them.  Michael picked her up from Nahum's lap and she went to him without a fuss, something that wouldn't have happened 3 weeks ago when we first got to Pittsburgh.  (She'd cry if he got to close then.)

I gave her a mini-bath at the Ronald McDonald (our hosp room has no tub).  I can't let her incision sit in the water or let her central line covering get wet but I was able to wipe her down and pour water over her shoulders, back, and belly while she sat in 3" of water.  The steroids have made her grumpy so while she remembered the water being fun and tried to have fun she really just ended up pissed (her usual situation).

After bath time, we saw her old liver.  They started off showing us a normal liver of a 1-year-old, then an adult (both drained so not red with blood but gray), and finally uncovered this massive dark green thing that was her liver.  We put on gloves and got to feel all 3 and hers was just as hard as it had felt when we touched her belly.  It was cut up from the pathologist's examination so it was hard to get the full scope of the size in her as a couple pieces were missing but an incredible experience all the same.  We've got pictures that I'll put on the password site this weekend for you curious folk.  There was no diagnosis so Shayna is still exceptionally unique.  It was like cyst type things had formed between her inner and outer bile ducts causing the liver to slowly fill with bile, as it would have with biliary atresia.

She does more sitting and playing on her own each day so is returning more and more to herself.  She sat in bed and played while I did stuff around the room today; though, she always keeps her eye on me.  She talked to me while I washed bottles this evening.  Her vocabulary suddenly jumped pre to post.  She used to just stick with repeating one sound to me with various intonations.  When she finally found her voice post-transplant, she was suddenly combining her sounds so it's more like words.  I've got a new vocabulary to figure out now.  We had a delightful 1-1/2hr nap together on the foldout bed this afternoon.  I relish the rare occasions she wants to sleep with me.  It's magical to be curled up next to my baby.

Time to get ready for bed; though, I think Shayna isn't actually sleeping, just being quiet in bed because I hear some crinkling toy she may have gotten her hands on.

Day 15: MRCP

Shayna had a rough day yesterday recovering from the morning's MRCP (a fancy MRI) because of the sedation.  She barfed up her meds afterward, hardly ate all day, and slept a lot, which are all regular and normal side effects of the sedation.  It was the worst reaction for her that I've seen.  She got a lot of holding and babying yesterday because she felt so crummy.  She finally began to come back to herself around 9pm and nearly doubled what she'd eaten all day by downing 3.5oz.  She made me work in the night too as her appetite is starting to come back.  We're also nursing again too, which makes the nights tons easier.  (I hate fixing bottles in the middle of the night because it wakes me up so much while I can change diapers and nurse in my sleep.)

Medically, we missed rounds yesterday as we were out at the play rooms (people watching not playing) so I'm not sure what's going on there.  Her bilirubin had dropped to 1.8 Wednesday and the steroids seem to be having their usual side effects of puffy cheeks, irritability, and increased appetite.  They also have a 98% success rate for kicking the rejection.

Shayna is with Grandpa Michael today so I'm free till 2pm (we start our "teaching" then about post-hospital Shayna care) so I'm going to get back to being free.

Day 14: Liver Biopsy

Shayna got a biopsy yesterday morning that did show some slight rejection so she's now hopped up on steroids to treat that.  We'll be inpatient until mid-next week now.  50% of transplants suffer from rejection or infection so this is par for the course and, since it's minimal, the steroids should nip it in the bud.  It will make her a little grumpier (my own little Grumpy the Dwarf).

She's down for an MRI with color contrast right now to make sure the bile ducts are operating correctly.  We've also entered the teaching phase for medicating her.  It's nice because I no longer have to beg to help with her medical care but am expected to help dishing, serving and understanding her medications.

She is healing quite well as can be seen by her tantrums when she wriths and screams on the bed.  She also reliably sits well and plays with her toys and playing pee-a-boo can actually make her laugh.  She was in an exceptionally good mood last night as she sat in bed, played and talked with me while I washed bottles.

Instead of a long post I put some time into pictures.  Enjoy.

Oh, she also pulled her own ND (feeding tube) out as a wake-up present for me yesterday morning and has been eating even better since (16oz yesterday).  She's also nursing a bit again which makes nights much easier.

Day 13: So far so good

It's really hard not to get too excited but things seem to be going remarkably well.  Shayna continues her steady improvement.  While her naps yesterday and the first 1/2 of the night were fitful, I finally swaddled her arms (so she doesn't startle and wake herself up) and she slept like a baby until she was woken for her 7am ultrasound.

Blood flow in her new liver continues to look good but there is concern that the bile ducts aren't draining well.  That and one of her liver numbers (Ggt) isn't coming down are the only things of concern.  All of her cultures from various fevers have been negative.  She ate a whole 13oz yesterday and got another 5.33oz via the night's tube feed.  She sat unsupported with me in our doorway last night and people watched.  We took a walk around the ward in a little red wagon. (I've got a tumble seat from PT that I propped up in the wagon for her.)   The miracle for the day for me was how well she slept last night.  She as no continuous iv fluids (no more vein food as she's eating well).  Last night was the last night of tube feeds (more work for me, but a very important step to discharge).    She is currently wire free until she's on the monitors for heart rate, respiratory rate, etc.  Her 2nd JP drain also fell 1/2 way out so was fully removed (no more belly juice bulb!).  The drainage had significantly decreased, but she still has some work to get her body to fully quit draining fluid into her belly. (This is a continuation of the aceites we fought before transplant.  Her body needs time to readjust to the new situation including stopping the fluid drainage into her belly.)

Michael got here as we were heading down for ultrasound.  She ate 2oz when we got back to the room then I handed her to Michael so I could shower and pump.  She did not protest in the slightest, just kept her eye on me when I came into view.  I gave Michael a bottle which she quite willingly took from him.  It's wonderful to see how comfortable she has gotten with him as none of that would have happened before.  I took a beautiful hour stroll in the neighborhood and up to the top of the 40th St bridge (over the Allegheny River) and found one of the river walk trails.  PT came by while I was gone and Shayna gave Grandpa another compliment by reaching for him while the PT lady was working with her.  I got back just in time for rounds.

That's where we got good and bad news.  Since the Ggt isn't coming down there's a liver biopsy schedule for tomorrow.  It the Ggt is still elevated with 6am labs, she'll have to have a biopsy.  If they do come down, there's a good chance we'll be discharged on Friday.  Otherwise it'll probably be early next week.

She just woke from her 2nd nap.  Nahum is going to feed her.  After that we'll do 5-10min of sitting and playing so she gets some work then we'll take her off the floor for a stroll in the little red wagon.  There's C-mas decorations on the 6th floor (we're on the 7th in ward 7b).  I want to show her the tree.

Day 12: First Smile

When I got to Shayna's at 8am this morning she started asking me for food for the first time since I upset her belly the first day of feeding again.  By the time I took a break at 2 (Nahum and Hilary are with her), she'd had 5oz already!  After breakfast, we played pee-a-boo with a napkin while I held her and I got the first smile out of her.  She's feeling much better so is interacting a more (playing with my face, picking up her toys).  She can almost sit on her own again.  It's kind of been like a newborn on fast forward watching her come back to where she was pre-transplant.  It's a long PT road ahead to get there but with my pushing yesterday and this morning and her sick of lying in bed, she wants to do more all the time.  She also took a real 45min nap this morning and cried for food when she woke after not sleeping at all yesterday.  (It's amazing to watch the breast milk actually disappear from the fridge for the first time in 3 months.)

As you can see, today is great compared to yesterday.  Yesterday was bad for multiple reasons.  Her FK/Prograf/Tacrolimus (the anti-rejection medication) levels were ski high at 20+ (goals are usually 8-12, but not sure exactly what the docs are shooting for for her) with a lower magnesium level (a common side effect of FK).  This combo can make kids really jumpy and jittery.  Combine this with the bit of withdrawal she is suffering and you get the scare we had yesterday.  I don't think she slept much in the middle of the night with Michael but she did have long periods of quiet in her crib.  The jumpiness made any motion or noise impossible.

The meeting  with her doc was good this morning.  They're still not seeing the bile drainage they want to but the ducts they connected to on her new liver were so small that any amount of swell at the connection site could restrict drainage.  We'll get an ultrasound tomorrow if the issue continues.  Dr. Kyle (Soltys) upped her night feed for tonight from 15ml/hr to 20ml/hr.  We're continuing on the methadone ween.  Dosing is still every 8hr, but the amount was backed off (0.375mg? to .25mg? (I'm sure to the numbers but not the units)).  It's a fine balance managing pain and treating/causing addiction.

I'll end with a fun note: There is no more yellow in her eyes!

Day 11: Coo to Withdrawl

The morning started great.  Shayna opened her mouth for her bottle and ate 2oz in the first hour post tube-feed with a by-mouth total of 8oz.  She cooed for the first time in December as she lay in my arms.  PT came by to teach/tell me what I need to be doing with her to get her back in shape.  Shayna responded well to a supported sit and the chair they brought that I can lay her in and actually tried to reach for some of her toys.  From the chair, she was able to pick up her tissue packet, that she loves to chew on, from her lap and try to get it in her mouth.  After a couple misses she got frustrated and flung it from her.  I put it back on her lap only to have her toss the offending packet off a few times.  Great practice to get her arm strength and coordination back.  With our work today, she learning she can move her body herself again.  It hurts but not as much as before.

On the down side, she's suffering from withdrawal from the PICU pain med Fentanyl.  She's on Methadon to help with that (and the pain) but still had the sweats, was extremely jumpy at slight noise and touch, and jittery in general.  It was a frightening experience for Nahum and I.  She spent a lot of time in my arms this afternoon and evening getting what comfort and rest she could.  She never did nap today but did manage a couple fitful rests with Nahum and I.  She seemed a little better at 10pm so I stuck with the plan and Michael is with her tonight so I can sleep (last night I slept from 1am-7am with 4 wake-up calls in between from Shayna, her machines and the nurse).  Hopefully she's sleeping now.  She's also on her 3rd official fever (over 38.5C or 101.5F) that requires a blood culture.  These are common with transplant and often unexplained.

The days just get busier.  I'm going to make use of my night away from beeping machines and get to bed.

Days 9 & 10

Both days are blurry as they we busy and I'm exhausted.  Shayna returned to us yesterday.  She still doesn't move much, but her mannerisms and reactions are the full Shayna (no more paralytic in her system).  Things got better today as she actually pickup one of her tiny ducks and was happy in a supported sit (you have to treat her head like a newborn's as she has too little stomach muscle connection to hold it up on her own yet).  She gets more interactive with the world each day as her pain diminishes and her belly heals.

I fed her too much too soon on day 8 so she didn't want to eat yesterday since it had hurt her the day before.  I did a lot of coaxing to get 4-1oz feedings during the day (she's on 10ml/hr from 9pm-9am (~4oz total)).  I still had to do coaxing today but it was a lot easier with a total of 7oz in 5 feedings.  Her feeding tube bothers her a bit as is slides up and down a little which irritates the throat making things a little harder.  As she tollerate more food, they'll up her night continuous feeds through the tube.  Once she gets her daytime feedings up to 20oz reliably, they'll pull the feeding tube.  Right now it really helps both of us to have it in for her night feeds since just picking her up with all her tubes, wires, and sliced belly is a 2 person job.  It gives the person on night duty a chance to nap. 

Michael and I are switching night time duty.  I don't know how I would survive without that as she was really fusy last night so kept him up most of the time.  She responds well to him and finds comfort from him, a blessing for all three of us as I get to sleep, Shayna is "happy", and grandpa feels loved by baby.

I almost forgot the biggest news.  We moved from the PICU yesterday to a regular room.  Our nurses attention is now divided among 3 patients insteads of the 1:1 which sucks but we have a lot more freedom (I can eat in the room, there's a floor fridge for food, more than 2 people can be in the room, etc), a bigger room, and our own bathroom.

Medically Shayna continues to do well.  Her liver numbers continue to drop and are nearing normal ranges (T. Bili 3.4 today).  She got some more blood due to low red blood cells and was back on diuretics for the day.  No fevers.

I'm going to eat a little so I can turn in soon since baby is asleep.

Day 8: a full day

This is her favorite position.

 

Today's highlights were feeding and holding Shayna for the first time, a longer visit from Nahum, and another night of rest thanks to Michael.

I should start off by thanking Michael for doing night duty last night so I could get one more night of sleep.  Shayna still just needs an advocate and observer with a little help (mainly to help manage her pain as the nurses are generally afraid to treat pain) and not specifically me yet.  I used that to get another 7hr night sleep.  Michael had great luck with the nurse practitioner on duty last night as far as she was very attentive of Shayna's signals and observant of her needs.

Shayna was cleared for food by mouth by her surgeons this morning so at 7:30 I gave her her first ounce of breast milk in a week.  Boy was she grateful.  I made sure the nurse got us a slow flow nipple so she wouldn't wolf down the milk which turned out to be a very good thing.  She had to work harder for the ounce but she didn't give herself a bellyache by eating to fast after not eating for a week.  We have to take it slow for that reason and the fact that they slice and re-attach her small intestines for the Kasai.  She could have an ounce every 3 hours.  Since she tolerated that really well the nurse just told me we can up it to 1.5oz/2hrs.  She still gets food by vein too.

I got to hold her for the first time this morning and again this afternoon which was wonderful.  I was thankful for the previous experience at the end of June.  While her current state is about 8-1/2 times worse, I was much more comfortable handling her.  She's like any of us in pain.  She doesn't want to move from the comfortable position she found but needs to move to promote healing.  We still rotate her between a slight lean, flat on back, to a slight lean the other way to keep her from getting bed sores (alone with some other tricks).  Holding her is just a new position and the movement she grimaces at to get there is needed too.

Nahum is getting much stronger.  He went shopping with Hilary at Whole Food visited Shayna and I for 1-1/2hrs.  He even got around the hospital without a wheel chair and is losing his shuffling gate.  It's great the see such significant improvement.  Keep up the good work Nahum.  Tomorrow he's supposed to get us a menorah and candles for Hanukkah.  I can't light the candles but I can at least put them in to mark the days.  There are some great neighborhood stores a block or two from the house for this.

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.

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.

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.

Our New Home

Everything seems to be falling into place.  Nahum’s massive grant proposal (due this Friday) is coming along nicely.  I found a beautiful 2-bedroom apartment in a lovely neighborhood (it’s the first floor of the house in the picture).  Our transplant assistants Michael and Hilary will be joining us for dinner on Tuesday the 17th and all appointments on the 18th.  I may have found a crib, mattress and bedding set all from the same person who’ll bring it to our home-away-from-home Tuesday evening.  My good friend’s mother-in-law will be in B-burg this weekend from Pittsburgh and has volunteered to drive a bunch of gear up for us so we’ll have everything we need for our Pittsburgh “winter vacation”.  My mom Melinda will be joining us for Thanksgiving (she does a great Thanksgiving spread so that’ll be a real treat).

Our Pittsburgh address will be:
2311 1/2 Eldridge St
 Pittsburgh, PA 15217

I’ve got a lot of packing to do this week (including unpacking some boxes of clothes because Shayna is back in 3-6 month clothing).  It’ll be interesting to see how I pack for 3 months away.  It’ll be a good lesson as we’d like to go to Israel for 3 months in the summer of 2011.  (Nahum would work at the Technion in Haifa.)

Shayna continues to get stronger.  Nahum found her sitting in her crib when he went to get her at 11pm last night (I’ve never seen her even try to pull herself up from any position).  Her legs can really support her whole weight now and when she’s sitting she tries to reach things that are so far away she follows over, a first step on the way to crawling.  She probably still won’t crawl, but it’s delightful seeing her feel so much more comfortable in her body and be so strong that she would even risk reaching that far.

I better get going so we can go for Shayna’s weekly blood draw and Dr. Hart can have some numbers for our last appointment tomorrow.

Game On!

Transplant Day: Thursday November 19, 2009

We are officially fully scheduled for our Living Related Donor Liver Transplant between Nahum and Shayna. We will go to Pittsburg on Tuesday the 17th to meet with my dad Michael and Nahum’s good friend Hillary. (Michael will be taking care of me so I can take care of Shayna and Hillary will take care of Nahum for the first 3 weeks we’re in Pittsburg.) We’ll meet with both Shayna and Nahum’s doctors & surgeons on Wednesday. We’ll say “see you later” to each other. Nahum will check into Montefiore and Shayna will check into Childrens for Wednesday night. Nahum will be opened around 6am Thursday for the beginning of his 6-8hr surgery. If all goes well, Shayna will be opened around 7am for the beginning her 8-12hr surgery.

Nahum is relieved and excited and I’m my usual nervous and anxious. It’s nice to finally have a date for our new beginning, but not knowing what we’ll get on the other side is nerve racking.

I’ll post more this weekend when my brain isn’t so tired and we’ve got more loose ends tied up.

First Halloween

We had a wonderful time on the town last night.  First downtown at a local church and the downtown merchants collecting some candy then to the BCC and the preschool room festivities.  Shayna absolutely loved watching all the kids and parents in costumes.  (Much better than just plain old people.)  She got into a shouting match with her friend Avi about candy and showed off her new muscles to friends by doing some moves I hadn't seen her do.  And she fellover face first from sitting and for the first time didn't cry about it.  Enjoy the pictures.

Cool Stuff on the Side

Check out the side bar.  There are links to one family's blogs about their life with Biliary Atresia.  Their son was transplanted Dec 2008 after 3 years on the waitlist in Atlanta.  So if you want to read about what we'll be going through soon start in Dec 2008.  They did excellent coverage of their lives and their son Ian is about as close to a best-case-senario as a person can get.

If you go down a little farther, you'll find videos of our princess.  If they show weird pictures just refresh so they show pictures of her.  (I think the blog must be pulling from a channel with a similar name.)

Shayna continues to make great strides in physical therapy.  She worked so hard this morning she slept from 10-12, 1-3, and 5-6.  She's getting so much stronger it's amazes me.  I don't think she'll crawl before tranplant but she is starting to catch up with her peers a bit with her core strength.  This allows her to reach much farther for toys and balance better in a bumpy stroller ride.  I guess she decided to be like Aba and train for her surgery as if it were a marathon.  She also put her foot in her mouth for the first time today.  That ginormous belly had been in the way before so she didn't even try before.  It's been a lot of fun reconnecting with the normal development milestones.

Nahum just put Shayna to bed so it's time to go relax with him and watch some more of the movie we've been working on for the last couple days.

We Still Don't Know

So I'm sure plenty of you are waiting.  Unfortunately, so are we.  Everything's been cleared except for Nahum's cholesterol levels, which is a concern for his health not Shayna.  It's also hereditary and seems to have no ill effect on the rest of his families' health so we're hopeful that whatever the results are of tomorrow's blood test, he'll be cleared for surgery.  Since we're so close, we do have a reserved date of Thursday, November 19.  Shayna's holding her own quite well too.  She hasn't lost any weight since all the water she shed, is getting stronger and more sure of herself, and her lab results (from blood draw Mondays) continue to hold steady. 

I've got some new pictures up on fb at October 2009.

New Update Format

Hey all - I wanted something that has a more fun look to it and I can easily put pictures in so we're going to start doing all our updates in a blog.  I added something on the side of the blog that you can click on to "subscribe" to the blog but I haven't figured out how it works yet so your guess is as good as mine.  I'll work hard to do good, prompt updates and y'all can figure out the subscription thing.

Nahum and Shayna both have to have blood taken Monday after which we hope to know for sure whether or not Nahum can be a donor.  I hope for Shayna's sake that I'll be able to post something on Nahum's LRD status next week so we can move forward.  Either way, I'll let y'all know what's going on after our next GI doc apt next week.

Basketball Player

Get October pictures at October 2009

New Site

So I'm going to try to switch over from the care page to this so it looks prettier and I can put pictures in the post (when I remember the camera). I forgot the camera on our last trip so I don't have anything new right now. Until we know more....

Home again

Friday Oct 9

We made it back just before midnight last night. Nahum was a driving hero again and Shayna was an angel. It was so nice to sleep in our own beds!

We all got poked yesterday. Shayna got a vitamin K shot, Nahum’s blood type was double checked (a rule to make sure the first one wasn’t messed up), and I finally got the lab work done so I can donate the freezer full of milk (it’s no good for Shayna, I need my freezer back, and it’s torture to pour that stuff down the drain). Shayna gets a weekend reprieve before we have to do labs again Monday. Poor kiddo.

Nahum’s tests went really well so he passed everything on his side of the evaluation. Now it’s up to Shayna’s surgeons to exam all the data and see if Nahum’s liver is a good fit for Shayna. We hope to know something in a week. If all goes well, we’ll be able to talk with Shayna’s local GI doctor Dr. Hart on the 19th and set a date for transplant. I’ll post again after that but it’s looking like a Children’s Hospital Thanksgiving.

Overall, I’m really pleased with the trip. I think I’m much more prepared mentally for a mad-dash liver trip should we ever get a call. I’ve got a lot of work to do in the next few days to make sure that goes as smoothly as it can but at least I now know what needs doing to make that possible. We got some good advice on how to help Shayna deal with the “torture” we’ve been putting her through once she’s older and can begin to understand. I’ll be calling that lady today to get some advice on how to cause the least damage during Shayna’s current“torture” sessions. (Yes, it is for her own good but she’ll have to get closer to 3 years of age to begin to understand that so for now it is just torture.) We got some other info from Nahum’s people in Pittsburgh that’s filling in a lot gaps from the people on Shayna’s side so, while I’ve got more paper work, at least I don’t have to do as much research. We also made some new friends. Wednesday evening at their place was a real treat as they seem like warm, caring, fun and smart folks. (Plus, they gave Shayna some more baby books which is an area we have been lacking in.)

Thanks again for all your kind words and positive thoughts. Your support makes this experience much more bearable and seeing your posts continues to help pull me through to rough times.