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!