Day #11 post-op

6:29 p.m.
I spent most of the day at Kohl's House resting and catching up on bill paying.  From Scott's report, it sounds like Shelby has had a great day.  Her labs are now spaced out to 3 times a week.  For my liver peeps - AST 43, ALT 156, GGT 191, direct bili .3, platelets 118,000.  They did start the ng feedings of Pediasure at a rate of 25 ml/hour.  Overnight they'll up them every 3 hours to a max of 45 ml/hour.  They're just trying to get her gut to wake up a bit more.  This is the kid that was on 3 different meds for getting her gut moving "normal" anyway.  Once things start moving, maybe she'll feel hungry.  We shall see.  Physical therapy came and worked with her and Occupational therapy will come evaluate her probably tomorrow.  She did eat some Nutella and breadsticks that Grammie had brought her.  She played Body Parts bingo (on the hospital's TV channel) and had visits from Dr. Jill and Joanne.  She's been napping now (again) for about an hour.  That methadone sure knocks her out.  The resident just came in and said they're going to switch her to oral methadone and ativan to help with her being so sleepy.  Also, she's down to 7L of O2!!!!  Overnight they're going to try to get her down to 4L...4L means she can go to the floor.  Maybe not like tomorrow, but soon :-) 
 
10:08 a.m.
She slept 10 hours last night!!!!  Whohoo!  The goal for today is getting her eating more and try again to get up to the chair.  She is so weak she can barely bring her hands to her face, but to help strengthen them I had her pick up some ice chips by hand so she could work on getting her hand to her mouth.  It was very difficult for her, but she did it.  As her Mom I have to fight the urge to do everything for her as I know that will not be helpful in her recovery.  They were able to get her down to 9L of 100% O2 last night :-)  Now, I'm going to rest at Kohl's House.

4:00 a.m.
Just wanted to do a quick update on the tablet.  Our girl is SO much better.  Very, very weak, but no more seeing crazy, scary things, and having bad withdrawal :-)   It was amazing last night when she wanted to see something on her ipod, but we needed to log it on to the hospital's wifi.  I said "I'll have to get my code" and she said "I remember it" and proceeded to rattle it off.....perfectly.  All 8 letters/numbers.  Um...she was just on a ventilator for 8 days and on mega doses of pain meds and amnesia/anxiety meds and I can't even remember it every single day when I turn my laptop on.  VERY impressive, my girl, VERY impressive :-)

Day #10 post-op

2:39 p.m.
Harder to update when your kid's awake:-)  She's much more coherent today.  :-)  She's eaten ice chips, apple juice, water, taken oral meds and a bit of a milkshake.  If she eats a bit more the ng tube can come out.  She got up to the side of the bed (with a ton of support - her head wobbling around reminds me of a newborn's) and stood up about 3 times - with MEGA help from her wonderful nurse Meghan, but still a wonderful accomplishment....and she didn't desat like crazy while doing it.

They're trying to get her off the NO completely.  While I was sleeping at Kohl's House earlier, they tried to turn it off (its down to the lowest setting), but she desatted into the high 70's.  As I type they are moving the ventilator out of her room :-)  They are going to turn off the NO completely and turn her O2 flow back up and see if that works.  

Things are progressing very nicely; so much that Scott and I felt comfortable not being here for rounds.  Of course, my parents were here with Shelby during that time.  She was very happy to see Grammie when she woke from a little snooze.  

All in all, a great day so far.  She is weaker than I imagined, but when I think of all she's been through it makes sense.  I'm just so used to my super-strong girl.  I'll update later and hopefully have some pics from today.

Day #9 post-op

9:43 p.m.
My poor girl is having withdrawal from her pain meds .  Now instead of precedex being our best friend, we are trying to love up methadone.  She is seeing things, babbling incoherently, shaking/jerking and, get this, talking in an English accent.  My parents are resting up at Kohl's House in preparation for us to be exhausted after getting through this night with her.  I'm just doing this update quick before I rest; Scott has the first shift.  Pray for restfulness for my baby tonight.  While all the pain meds she was on were great, this is what you have to deal with.  After covering her eyes with her hands, she told Scott she was trying to have a good dream.  Sigh...let's all send sweet dreams Shelby's way.

5:02 p.m.
SO HAPPY!!!  She is on 15L of 100% O2, but doing great.  She IS very, very confused...probably hallucinating...and very mad that we don't understand what her little tiny whisper-of-a-voice is trying to say...but our Shelby is back :-)

 
4:12 p.m.
The vent came out at 3:30 p.m.!!!  She's on high flow oxygen and trying to talk with no voice!!  She just took her ipod to show her Mom how to work it.  Gotta love her spunk!  Btw this is Jenn's Mom as Jenn is at Shelby's bedside.

10:25 a.m.
Rounds went well.   Her lungs look MUCH better so no worries there in regards to extubating.  They will come back early afternoon and "test" her again to see if the breathing tube can come out today.  She has been resting very soundly.  Yay for a higher dose of precedex!  In fact, the nurse bathed her and washed her hair last night and she didn't budge during all 3 of her breathing treatments.  Also, the surgeon pulled one of her JP drains this morning.  Yippee!  She'll hate the other one, so at least one is out and was done while she was sedated.  She grimaced a bit, but settled right back down.  She only has her arterial line and PICC line in; the other 3 IV's went bad and were pulled and there has been no need to put new ones in.  Her labs continue to head in the right direction.  I'm very happy with her progress.

My happiness is a bit dampered by the fact that the little one I mentioned yesterday that was not doing good passed away this morning.  They are in the room right next to us.  My heart breaks for the parents.  The sobs of the mother just shake you down to your core.  While you are really so close in proximity in the PICU, you really stay pretty private.  As much as I wanted to hug those parents, I know that HIPPA and stuff says its not o.k. to just walk in there and do that.  But, my heart tells me to.  I didn't, though.  Strange, isn't it?  How "rules" keep us from doing that.  I'm feeling torn about that.  You just heard them go through hell, yet you sit in your room and pretend like nothing is happening.  I feel kinda cold, insensitive, yet like I need to protect myself from that because we are totally on the flip side.  Shelby is healing; progressing.  When her beloved nurse Meghan was explaining what things would be like post-op Shelby asked "Why are they going to keep me asleep?  Isn't the point of life to live?!"  Well said, my sweet, sassy one, well said. 

Once rounds were done and my parents were there, I headed over to Kohl's House to shower up and get some breakfast.  That family should not have to leave without their baby.  I have a hard time believing, after seeing him in his mom's arms, that he is in a "better" place.  I just do.  That is where he belongs.  I know we are promised eternal life, but its hard to comprehend when someone so young dies that there is someplace "better."

I said it in December 2010 and I'll say it now.  I hate the PICU.  There are wonderful nurses and doctors who provide fabulous care, but you just see too much for your mind and heart to wrap around sometimes.  Sigh.  Please pray for comfort in the coming days, months and years for this family.

3:05 a.m.

I'm not posting at this time because something's wrong; its just the start of my shift. I fell asleep realizing I did not correct that it is not pleural space where the fluid is collecting as was originally thought.  Her lungs look not-so-hot on the xray due to atelectasis, especially of the right lung.  She's had two rounds of CPT now and has tolerated them very well = her sedation is working great!  So, we see what that 4 a.m. xray shows.  She is still being kept NPO (ng feeds) just in case she can be extubated tomorrow.

Day #8 post-op

11:21 p.m.
The PICU doctor came in and talked to us about the ultrasound results.  The results are not as bad as the xray indicated.  Her right side has more fluid than the left, but it is still not very significant.  No chest tube for now - phew!  The plan is to start CPT to get that fluid moving and have a repeat xray in the morning.  If that looks better then midday tomorrow they will "test" her to see how she does breathing while hooked up to the "bag" instead of the vent (wish I knew the term for that, but I don't).  Here's praying for her to have a restful night with good sedation and to tolerate the CPT well without getting too aroused.  Also, that the CPT makes a difference and gets that fluid out!

Believe it or not, right now with the vent/breathing issues, its more like she's *just* recovering from a surgery, not a liver transplant.  I think once she gets off the vent the reality of the transplant will hit.  Also, we're not too focused on the liver right now because all her labs keep coming back awesome.  Its normal for rejection to happen at some point, but we are SO not thinking about that right now.

9:45 p.m.
Still waiting for the PICU doctors to round this evening and give us the scoop on her lungs.  I found some comfort in going back and reading my friend, Moreena's, blog from Annika's time in the PICU.  Thank you for recording that, my friend, in your eloquent writing style.  It did bring comfort, although Shelby is faring much better than Anni seemed to on one of her *good* days, to know how Annika is now and what she overcame in her PICU days.   

Below are pics of a "rash" that Shelby has developed in the past few days.  She also has it below her nose and upper lip.  Dr. Whitington said he'd "bet a buck" its a drug reaction, but dermatology was consulted and said it was like an internal trauma to the skin, possibly from her being so swollen.   Who knows.  They're keeping an eye on it.  Oh Shelby!  You and your mystery skin "stuff."

Crazy mess of IV stuff, anyone?!  I'm glad I don't have to figure all that out.

8:03 p.m.
The ultrasound just happened a few minutes ago.  Amazing that while inpatient, in the PICU none-the-less, it took 5 hours for it to happen.   If the doctor doesn't come tell us in a bit those results, our nurse said she'll call him/her (I don't know who is on tonight).  Sigh.  Big bummer today.  She's very quiet, very sedated and getting some much-needed rest.  My parents came back in today and for that we are very thankful.  I ended up napping in the room while waiting for the ultrasound.  Now, we're going to try to figure out what to eat.  Prayers, please, that the fluid in the pleural space goes away on its own.  I'll update when I know more.

2:50 p.m.
No extubation today.  Apparently there is more fluid in her lungs than was indicated during rounds.  They tried to take her off the vent and had her breathing through the bag (? I don't know what its called) and she was maintaining her sats, but she was working way too hard to breathe.  She's on the vent now, but still doing the breathing on her own like earlier.  She was given more precedex (higher dose now) because she's been way too lucid again.  She was also given a prn dose of versed.  An ultrasound of her lungs/diaphragm has been ordered.  If there's too much fluid she will have to have a chest tube placed.  It will most likely be a few more days before they look at extubating again.  We are very disappointed for our little girl, but do NOT want her to be extubated too soon and have to be reintubated.  I'll update when I know more.


11:42 a.m.
The doctors needed to extubate her are working with a really sick baby that came into the room next to us so we continue to wait.  Shelby is in and out of it, but pretty calm.  Impatient, but we wait.  I pray they can get that little one stabilized.  I don't think things are very good over there :-(

9:57 a.m.
The team has rounded and all looks like a "Go" for extubation, but we have to wait for the PICU doctors to be done with rounds (and the PICU is FULL today) so they can come evaluate her and hopefully pull out that breathing tube!!!  She's been breathing on her own for 4.5 hours now and took a deep breath for the doctor when he asked her to.  Waiting impatiently, but luckily Shelby is resting peacefully. 

7:15 a.m.
The night went well.  She was more "awake," but settled down pretty easily.  She is getting uncomfortable laying there and tries to find a *better* position, but that's so incredibly hard to do when you're drugged up, have in a urine catheter, a huge scar (by the way, she has a mercedes incision), both your arms in immobilizers, a PICC line, an arterial line (right in the wrist, of course, so you have an immobilizer on that hand) and 2 jp drains...oh and a breathing tube and an ng tube....but my girl gives it her best shot.  Since about 5:30 she's been doing all the breathing on her own.  Its a "pressure trial," I think.  That means the basic settings of the vent are on to accommodate for the tube in her throat "obstructing" her airway, but otherwise she is doing all the breathing on her own.  So far, so good :-)  Please pray for extubation later this morning...I'll post as soon as I can, but I'm pretty sure I'll be loving up my sweet girl so don't worry if I don't post for a while.

Day #7 post-op

12:33 a.m.
Scott is taking the first sleep shift tonight.  Shelby is resting peacefully.  They've been able to come down on her morphine drip today, she's tolerating her feeds, she's hardly needed any prn's and she continues to handle her vent and NO setting decreases.  Once again, if this path continues the plan is to extubate her after rounds in the morning around 11 a.m.  I am excited and nervous.  Pray for all to go well please :-)

2:25 p.m.
Nap was great!  Scott is still at Kohl's House sleeping.  I think he's about 2 years behind on his sleep :-O  We have AMAZING nurses here allowing us to feel o.k. to rest while she's sedated.  I napped in her PICU room, but slept through all her cares.  Shelby has had a great day.  She has been resting fabulously.  More vent settings have come down, the NO level came down, her insulin drip has been stopped (fingers crossed it doesn't have to be restarted) and they began giving her Pediasure through her ng tube.  She actually had an anderson tube in her nose that is for draining and in surgery yesterday they put a feeding tube in her other nostril.  Today the anderson was able to pulled :-)  Happy Mama here!  If things keep progressing this way the plan is to extubate her tomorrow :-)

9:14 a.m.
Ultrasound looks great!!!  Working towards extubation tomorrow.  Now off to nap :-)

4:41 a.m.

Night went very well.  Scott and I were very confident in her "new" sedative and with our night nurses that we actually left around 10 to go nap at Kohl's House.  That is a *first* for us to leave her without any family here.  That "nap" lasted until 3:30 a.m.  Ahhhh.....feels good.  Now we're back over here and she did great while we were gone.  A few times she got her prn's because her blood pressure went up a tad, but they were able to come down on several vent settings.  Since she's been on the vent for almost a week, its no surprise to see on her chest x-ray some fluid at the base of her lungs.  They are not expanding all the way so they have that particular vent setting a little higher than when she went in surgery.  She's taking more breaths on her own, though; just not full ones.  Around 7:30 she should get her ultrasound and the surgeon should be here for it because if there are any problems they'll take her back to the OR asap.  Pray that blood is flowing just fine. :-)

Day #6 post-op

9:19 p.m.

Got to see her a while ago!  She looks great!  She's only needed one unit of blood; we'll see what her hemoglobin is at the next draw.  Praying the night is quiet....

Showing all her "equipment."  Respecting my sweet pea's privacy that she is growing up and she just might not like people seeing her on a ventilator, I have blocked out her face.

7:45 p.m.
She's out. All went well. She's ALL closed. The surgeon said he'll breathe a sigh of relief after her morning ultrasound. She got some blood, not because she lost it in surgery, but because her hemoglobin was already on the low side. I saw her as they wheeled her in the room, but now I'm in the waiting room while the nurses get her all settled. I'll try to update again later :-)

6:20 p.m. Just took her to the OR. Should be about an hour and a half. Will update when I can.

4:50 p.m.
J.C. (surgeon) just stopped in.  Its a go!  No promises they'll get her all the way closed so please send prayers, positive vibes, cosmic forces - whatever you can send Shelby's way so that she can be closed completely.  Thank you :-)

3:54 p.m.
Surgery is still a go (as far as we know) but the case before her is running long.  She is still resting so peacefully (thank God!).  Brief movements from her and then she settles right back down.  Scott got a good nap and our plan is that when she goes to the OR I snooze and he goes to Kohl's House and showers.  I'll update when they take her back.

12:33 p.m.
The precedex was upped a tad and that did the trick.  She's been resting comfortably since.  They had to go back up to 10 on her NO setting (they had it down to 5, I think) and up to 65% on the FiO2 on her vent, but that is not a problem.  Not at all.  Shelby was so "with it" that I asked this morning's nurse to put a sign on her door asking everyone to talk about her care plan (a.k.a. surgery) outside her room otherwise she would get very agitated and shake her head "No!"  I was SO tired after rounds I collapsed in the chair; now its Scott's turn until surgery and then we'll probably snooze in her room until they bring her back from the OR and *kick* us out while they get her settled.

8:15 a.m.
A new drug is on board now, but we're not seeing its benefit yet.  She is now on a constant drip of morphine (260) and precedex (the new one) and gets prn (as needed) doses of ativan, versed and morphine.  So far, all that is not doing the trick :-(  This is very hard to deal with her and see her this way.  Please pray for her to be able to relax and rest.  Her OR time is supposed to be 2:15.  That can't come soon enough!  Scott and I are complete zombies taking turns sleeping in 2 hour (if that) stretches.  

4:13 a.m.
Its been a restless night for Shelby.  We really believe its NOT pain, but agitation.  While I was sleeping she mouthed to Scott "take me home" and then when he was explaining that the tube was helping her breathe, she mouthed "I can breathe."  Ugh.  This is not how lucid we want her to be.  Not.At.All.  Her nurse was great and gave her prn's of Versed and Morphine and the doctors ok'd her dose of Ativan early.  They don't want to up her drip of morphine because she's already on a pretty good dose, plus, we all think its more anxiety than pain.  If the combo just given...nevermind.  Just came back from helping to settle her again. We know that when its time to take her off the vent, this is how she will be.  For now, though, with going back to the OR, NO WAY!  Scott's resting now, but I've taken over watch of her arms going up in the air.  She knows all too well where her breathing tube and urine catheter are.  She can get her hands on them even with the immobilizers.  They do slow her down, but don't stop her.  Its literally a sit-on-the-edge-of-your-seat type of thing.  Please pray that she does not remember any of this time.  Please.

Day #5 post-op

9:42 p.m.
Went over to Kohl's House, took a shower and started some laundry.  Now Scott is over there drying it.  When I got back here Shelby was restless, but she finally settled down in the past 15 minutes.  Her sats are rock star right now - 96%.  Her temp is up a bit, though, at 38 C (100.4).  The nurse gave her a Tylenol suppository in the hopes that her temp doesn't spike.

Had to take a bit of a break there in updating.  She moved so I went to comfort her and noticed that her site of her JP drains was bleeding/leaking more than usual.  The nurse called the resident to come in and look at it and she will be in contact with the liver team to see if they want to do anything about it.  Getting pretty antsy about getting this kid to surgery and closed tomorrow!

5:53 p.m.

Seriously people, for computer savvy as I like to think I am, I cannot use paint correctly.  I just wanted to make little black boxes to cover up her girly parts, but ended up having to use the brush to make my boxes.  If anyone can explain it easily to my sleep-deprived brain, please leave directions in the comments. :-)

 Shelby just got her dressing and bedding changed.  She did well with her oral care, Nystatin and suctioning.  She's been listening to music today on her iPod.  So glad I found her little tripod before this.  It worked well for her making videos before the transplant and now serves well holding her iPod on her bed next to her :-)  Selena Gomez, music from the Disney show Shake It Up and Justin Bieber were on the playlist today.  She HATES relaxing music; it makes her sad so I said we wouldn't play any.  She smiled when her tunes came on.

Her iPod on her Gorillamobile flexible tripod.

I didn't quite get it in here, but Shelby and Daddy are holding hands.

The anesthesiologist came in and talked to me and the doctors ordered her Heparin to be stopped tonight so things are looking really promising for her to go to the OR tomorrow.  There's even a tentative time set - 2 p.m. :-)   So, we shall see...


9:27 a.m.
No surgery today, but she's on the schedule for tomorrow.  She is fluid-negative, but they want her to be even more.  So, pee away little girl, pee away!  Her sedation status continues to be monitored.  There were a few times last night where she had us jumping up to grab her hands before they got to her breathing tube, but she would eventually settle back down.  I really think she is more irritated than in pain so that is good.  The game plan for her today:  rest, pee and stay stable :-)

Day #4 post-op

8:35 p.m.
Today was a very restless day for Shelby.  I did not deal with it because after my parents left I went to Kohl's House and actually slept for 5 hours!  Scott did, though, along with our nurse, Colleen.  She just couldn't get settled down.  Finally when I got over here the doctors doubled her prn (as needed) doses of Morphine and Versed and upped her constant Morphine drip from 200 micrograms to 260 micrograms.  She is resting peacefully again.  While that is a lot more drugs on board, there is no reason not to use them when she can't even work towards being extubated until she is closed up in the OR.  I am very hopeful that will happen tomorrow as she is fluid-negative right now :-)  As much as I want to interact with her, I don't want her to hurt or remember any of this time being intubated.  Let's get her through being closed up and then the hurdle of getting off the vent can be tackled.  Here's praying for a calm night :-) and hoping I can report in the morning that she's heading to the OR.


10:19 a.m.
During rounds the liver people (Whitington and Superina) kind of laughed that the ICU people started Shelby on antibiotics for such a low fever.  They are not concerned.  Today the plan is to pull off more fluid so she can go back to the OR tomorrow.  No worries about her hemoglobin so no blood transfusions.  It is pretty darn amazing that for having liver disease and a liver transplant she's only had 6 blood transfusions in her entire life (1 after Kasai, 1 after distal splenorenal shunt, 2 during transplant and 2 post-op)!

She had about an hour of restlessness this morning that was finally brought under control - thank goodness!  Mom and Dad are getting ready to head home for a few days.  We'll miss them, but are happy to know they're taking our love back to Riley and Avery.  That's all for now, folks! 

4:51 a.m.
I just realized that the "Day #? post-op" does not accurately portray her post-op days, but more like days since surgery that I've slept and then considered my day to start.  For example, Day #1 post-op started when she was only like 6 hours post-surgery, but I had slept for a few hours and woken up, so, to me, the day had begun :-)  Thus, today is day #4 post-op.  

Her fever didn't last long.  Shortly after all the cultures were drawn her temp returned to normal.  Yay!  I hope nothing comes back on those cultures, though.  As a precaution she was started on Vanco and Zosyn (2 BIG antibiotics) every 6 hours.  She just got another dose of Versed as the one she got not too long ago wasn't quite settling her in, but here's hoping she's quiet for a while.  You'll be sitting there and, all of a sudden, her hands are moving...and now they've been moving towards her breathing tube.  Don't blame the girl at all, but she is nowhere near ready for that thing to come out.  I anticipate with it being Monday morning things will get busy here soon with the weekend being over.  Everybody and their brother will be checking on her.  Don't worry, my trusty Keurig is already pumping me full of caffeine.  Until later...

Day #3 post-op

11:33 p.m.
:-(  She has a temp of 38.1 C. (100.6 F).  Blood, urine and breathing tube cultures have all been drawn and sent to the lab.  Bump, bump, bump down the road of recovery we go.


9:46 p.m.
Got her moved to her new bed.  What a production!!!  Her weight is up 18.7 lbs. since she was admitted March 31st and 15.4 of that is just since surgery!!!  Granted she's got a much larger liver...but still.  She is still having a fabulous response to her last dose of Lasix.  She's calm and I'm praying she has a calm night.


Been thinking a lot about her donor today.  I wonder if her/his funeral was today?  Did they already have it?  Was there a funeral?  How is the family?  Do they know that their decision saved my daughter's life and we will forever be grateful?  Do they know that their loved one lives on now in my child?  Sigh...mind boggling.

7:36 p.m.
Good day.  Her hemoglobin went up to 9.1 after this morning's transfusion.  The surgeon wants it up in the double digits, but no higher than 12.  She got another transfusion this afternoon.  They doubled her dose of Lasix dose and it is working very well.  Shelby's lungs are really liking the Nitric Oxide.  Her FiO2 setting went from 85% down to 50% and her sats went from low-mid 80's up to 92-95.  Very happy.  Our nurse, Meghan, who has been a "regular" for Shelby did a lot with her today.  Lots of talking to her and Shelby responding appropriately.  My baby is in there!  She seems very comfortable and has responded well to Meghan talking to her to calm down.  Suzy is on tonight we love her, too :-)  Shortly they'll be moving Shelby to a bed with a scale so they can get daily weights on her.  Let's pray for a peaceful, relaxing night.     

11:31 a.m.
No OR today :-(  She is still about 400 ml's fluid-positive.  The surgeon wants her to ideally be fluid-negative.  They are also going to boost her hemoglobin some more.  They are talking Tuesday :-( for closing her.  Her sats starting running lower last night (like 85%) and just now they dropped down to 80.  The ICU doctors and nurses, the liver team, pulmonology, etc. all need to get on the same page and find out what they're comfortable with as far as her O2 levels go.  This will take some time.  They are going to try some Nitric Oxide today to see if that makes it able for them to go down on some of her vent settings.  We just still wait.  On this side of transplant, though :-)  On this side.

6:04 a.m.
Hemoglobin is just on the low side at 8 so in preparation for going to the OR today, she is getting a unit of blood.  THANK YOU BLOOD DONORS!!!!!!!!!!!!!!!


4:57 a.m.

My shift of sleep is over; now its Scott's turn.  I turned to my little Keurig next to me to help wake me up :-)  Shelby's night went alright.  She did have a couple "episodes" of restlessness.  She lifts her arms, kicks her legs, tries to lift her head and shakes it "No."  Heartbreaking, for sure, and tough to hold her hands and legs down - man she is strong!  The nurse gets more meds on board and then she settles down.  I really ask for prayers that tomorrow (oops, just re-reading this at 9:25 a.m. and I meant today) she can go back to the OR and be "closed up" so that after that, when she does show us those times of strength, her vent settings can be lowered, along with her constant morphine drip so we can work towards getting her off the ventilator.  She had another chest x-ray about an hour ago so we pray that that looks good.  She received more Lasix in the night so I hope to hear during rounds that she pulled off enough fluid to be closed up.  We are very thrilled with her progress.  I don't anticipate her liver numbers to have any problems this morning.  They have been trending down very nicely every time they draw them.  Of course, Shelby's were hardly elevated (and most were normal!) to begin with so they are amazingly high compared to that, but it is to be expected because that "new" liver did just go through quite a shock.  Please ask your church families to continue to hold her up in prayer.  She still has a long way to go.  I will try to update after rounds. 

Just wanted to take a moment to THANK Adele and Tom, Amy, and Chris and Heather for helping with Riley and Avery; Pastor Jane Eesley for visiting us the day of surgery; Bruce and Lori and Noelle for sitting with us and my parents during surgery AND to my parents for...um...everything! They have been with us since Thursday morning and it means more to Scott and I then we'll ever be able to express with just a "Thank you!" Also, to everyone who's offered prayers and encouraging words on Facebook, here, Shelby's COTA page and through phone calls or texts - thank you! I cannot imagine going through this without this "community" to hold us up :-)

Day #2 post-op

6:56 p.m.
Wow!  Time drags on, yet flies here.  I can't believe its been over 12 hours since I've updated.  The doctors decided to start her on a small dose of Lasix to help her pull off more fluid so that she can be closed up tomorrow.  She really looks fabulous already; no puffiness in her face, just her hands and arms.  Scott and I were able to get away late this morning and grab breakfast together before we crashed at Kohl's House.  Thank goodness for my parents being here!  With her sedated, we feel comfortable leaving as long as there is a familiar voice here to reassure her when needed.  Don't get me wrong, these PICU nurses are FABULOUS.  They really are!  We have been SO happy with her care.  Nurses from the 6th floor have been stopping in to see her and they are so thrilled, as are we :-)     

So the plan is to keep her resting, pull of some more fluid and go to the OR tomorrow to be closed up :-)  We are feeling SO blessed.

5:49 a.m.
I've had my 4 hour sleep shift, now its the birthday boy's turn.  Yes, its Scott's birthday.  :-)  Happy 45th, my love!  Shelby's night has been quiet.  She did, right before I fell asleep, reach both arms straight up in the air!  Scott and I both hopped out of our chairs and each grabbed an arm and the nurse was right in.  Booster doses of Versed and Morphine were given and she settled right back down.  She had a chest x-ray around 4 a.m. and that came back indicating that her breathing tube needed to come out 1 cm.  They gave her a short-acting (15 min. - 1 hr.) paralytic and an extra dose of Versed to keep her comfortable and to make the procedure safer.  She is so strong they couldn't risk her "assisting" them.  They just did that and she tolerated it well.  Her numbers did not indicate that she was anxious or in any discomfort during it (thank God!).  Her high blood sugar (a stress response from surgery, thus the need for the insulin drip as I mentioned in the previous post where I talked about the meds she was on) is coming down nicely.  So much that they've decreased the drip.  One great thing, too, is that she has continued making urine throughout everything.  That is very good as sometimes the kidneys "go to sleep" and have trouble "waking up" causing the need for assistance.  She is fluid-positive (that means taking in more than she's putting out), but its not bad at all.  She has very minimal puffiness.  She should have another ultrasound in the next hour or so.  They are looking for continued good flow of blood through and around that "new" liver.  Her incision dressing is pretty saturated, but that's to be expected and all the fluid coming out of her jp drains looks good.  Her post-op temp has resolved.  Daylight is breaking now and although I miss her voice and know that she would be so mad that she is still asleep, I pray for another calm, healing, restful day for my sweet, sassy girl.  Thank you organ donor :-)

Day #1 post-op

11:39 p.m. 
***Sorry they're not the best quality photos.  Many were taken with cell phones.

Getting an IV placed in the morning.  Shelby is squeezing Daddy's ear when it hurts and Grammie is squeezing Shelby's toe to distract her from the IV pain.

Shelby and Daddy love.

All dolled up for surgery.

Snuggling <3

Belly shot of Kasai and Shunt scars.

Her surprise for the surgeons!

Just chillin.

Shelby and Telly, ready for surgery.

 

How tall are you Shelby?

Shelby and one of her many poses.

Daddy all dressed in the "bunny suit" to take her back to the OR.

 

 

 

Her "tree."

The blue machine is the ventilator.

8:14 p.m.
Loyal followers, I know you have been checking all day for updates, but happily there is NOT much to report and Scott and I both got some sleep today :-)  She looks great with all her tubes, IV's and ventilator.  She really does.  For my own record and for those who are following along here and have a transplant in their child's (or their) future, I wanted to mention some of the meds she has running.  All are completely "normal" to be on for what she has been through.  She is one antibiotic, one antiviral, 2 anti rejection drugs (Prograf & Cellcept), Heparin, Insulin, Morphine, Versed, Ativan, Albumin, Nystatin and maintenance fluids.  These are all NORMAL post-transplant.  I'm going to try to rest a bit more.  Later, I'll try to add some pictures. 


8:22 a.m. 

Scott and I got to see our sweet Shelby around 2:30 a.m.  She is still on the ventilator, has a power picc, 1 arterial line, 2 IVs, 2 jp drains, an ng tube and a urine catheter.  In the past 6 hours, she has done quite well.  Her vent settings have gone down a bit, but her morphine/ativan/versed doses have gone up.  Good thing is she is not paralyzed.  She was waking and becoming quite aware/alert so that is why they upped the med doses.  It was upsetting to see her so alert and trying to talk and pointing at things :-(  As our new nurse for today said, "She doesn't just become 'aware,' she's ready to sit up!"  While its a great sign of her strength, and good that she is initiating her own breaths over the vent, we still want her to rest so her body is ready to heal and be completely closed back up tomorrow.  The plan today is to continue with pain management and keep her resting.  

Scott and I managed to get about 2 hours of sleep and my parents went over to Kohl's House.  Just a bit ago I sent Scott over there to sleep.  He'll get about 4 hours and I'll snooze in the chair here in the room once my Mom gets here.

Prayers please for a calm, restful day for my sweet, sassy fighter!  Thanks!

THE CALL!!!!!!!!!!!!!!!!!!!!!!

12:45 a.m.
The surgeon (J.C) just came and talked to us.  All went amazingly well.  Only 2 units of blood needed, he lengthened her roux, she's closed on the outside (good) and we should be able to see her soon!  The liver was pretty big (the donor was about 60 lbs. more than her), but she had room for that liver so they used the whole thing.  It will adjust down in size over time.  They didn't close her all the way because it can put too much pressure on the veins and arteries and you DO NOT want to cut off blood flow to a "new" liver.  Tomorrow she'll have an ultrasound to make sure all the blood flow is still good and at best, Saturday or Sunday be "closed" some more.  BUT, this is very touch-and-go still; the next several days will be bumpy, BUT that is pretty *normal* for this type of surgery.


Thank you everyone for your prayers and continued support!  I was overwhelmed when I finally got a chance tonight to read the comments on Facebook, this blog, Shelby's COTA blog and on Liver Families.  We definitely feel the prayers and strength you are sending her way!  I don't know if I'll update more tonight.  Maybe after we see her....


 
11:45 p.m.
Nurse called from OR.  Surgeon decided to lengthen her "roux" since it was done almost 10 years ago and she's grown so much since then.  Now they are hooking up the bile ducts.  Should be about another 1 1/2 hours.  She is still doing very well; has only needed 2 units of blood.  The nurse said she will come out on the ventilator because of how compromised her breathing was going in.  It is still undetermined if they will be able to close her all the way.

9:30 p.m.
THE NEW LIVER IS HOOKED UP AND PRODUCING BILE!!!!!  OMG!!!  She is continuing to be very stable and has needed very little blood products.  They're not sure at this point if they will be able to close her up....we shall see...so pleased :-)  Should be another couple hours or so.  Happy Mama here!

8:00 p.m.
Recent call from OR....they're sewing in the *new* liver!!!  This is amazing!  She has NOT required any blood products so far.  So thankful!

5:57 p.m.
Nurse called just before 5:30 and said they made the first incision at 5:10.  All the lines were placed.  Now, what they anticipate to be the toughest part - getting through the scar tissue of her past 2 surgeries (Kasai & distal splenorenal shunt) and getting her "old" liver out.  Update again in 2-3 hours.


3:56 p.m.
Scott walked back with her to the OR about 3:20 p.m.  Poor thing was crying and just NOT wanting to do this.  We are gathering ourselves, moving some things around in her PICU room and will grab a bite to eat.  They don't expect to start making any incisions for about 1-1 1/2 hours.  Sigh....now a different kind of waiting begins....we were told to expect her to be in surgery 6-12 hours.  I have lots of great pics from today it will just take me a bit to get them on here.  Pray, pray, pray for my sweet Shelby please.

12:34 p.m.
Surgery is scheduled for 2 p.m.  We have been blessed this morning by visits from many of the hospital staff that Shelby SO loves.  There has been fun and games, now she's  coloring with Grammie. 


Yep, its true.  Shelby (we) waited for 223 days for this.  At 3:10 a.m. Wendy called me on the nurses' phone.  She should go into surgery in the afternoon.  It will be a whole or reduced-size liver - YES!!!!!  Please take time to say a prayer for the family who made the decision to say "YES" as they grieve their loss right now.

Just don't know what to say

There really is nothing to update.  Shelby has to stay in the PICU until she gets her "new" liver and then she'll be here for a while afterwards recovering.  That's it.  That is exactly what is going on in "our" (as in Shelby and me) world.  The rest of Shelby's class/friends are enjoying being 4th graders, running around, hating/liking homework.  Shelby isn't getting a chance to do that.  She hasn't now since November 23rd.  I leave everyday for an hour or two to go to Kohl's House and get cleaned up.  I know that's good for me....BUT, I feel horribly guilty that I get to leave the hospital, go outside, and she doesn't.  She wants to go outside.  She wants to be smuggled back to 6 West.  One of the nurses from there came to visit her and she tried very hard to bribe her to take her back.  Overall, Shelby is handling this very well.  She really is.  Her bad moments are just that, moments.  I miss being a Mommy to 3 all the time.  So far, Riley and Avery are holding up well, but I'm sure my Mom is very exhausted.  Scott graduates in 35 days.  Will we be able to see that?  Who knows?  This is so frustrating.  Putting our life on hold is old.  I'm ready to move on.  Have Shelby back at home, in her room again, picking out her puppy, sporting her "new" liver scar, running with her sisters.  Ready.   Ready.  Ready.

Moved to PICU :-(

She just needs too much O2 to stay on the floor now.  Its been a gradual increase in need since we got here over a week ago, but enough that they couldn't give any more O2 on the floor and she had to be moved to the PICU.  She's on 10L of 60% O2 on the nasal cannula.  She needs that liver so bad.  That's what all the doctors say, too.  There's nothing else they can do other than provide O2 :-( 

Not much going on

Trust me, do not worry if there is no news on here.  No news = stable at this point.  Its good we're here because Shelby is definitely needing the 6L of O2 all the time.  She's at 6L at 60% on the high-flow nasal cannula most of the time, but her nose has been bothering her the past few days so she alternates between the cannula and a mask.  The mask runs at 8L at 40% O2.  Don't ask me to explain the difference; I really wish I understood the percentages of oxygen and the liters (flow), but I don't.  And that's o.k. because people here do and her sats look decent.  She drops consistently down to the 60's when she hooks back up to the oximeter after using the bathroom :-( and then the nurses come in our room and I have to tell them "she just used the bathroom" and they calm down a bit.  We are really lucky that she is in a room (same room as her long stay here Dec-Jan) on 6W.  Normally they don't let patients on as much O2 as Shelby is on stay on the floor.  They typically have to be in the PICU.  Shelby has nothing else going on right now so the nurses are o.k. with her being here.  Any more O2 or if (God forbid) she develops some illness, its off to the PICU she goes.   While its hard to be away from Scott, Riley, Avery, my parents and our home, Shelby and I are resting much, much better here.  Sounds crazy, I know!  Since Shelby isn't right in the middle of the action at home (our living room) she sleeps in much better.  Since I know the nurses have her O2 monitor covered for the  night, I sleep really well.  Even if it is in a recliner.  I miss Scott terribly. Tomorrow will be one week since we've seen him and that's by far the longest we've gone apart, but he is just trying so hard to get everything done for nursing school.  I had to take his graduation counter down, but he only has 41 days to go.  My parents, Riley and Avery are coming in tomorrow to celebrate Easter and they'll spend the night so we can celebrate Avery's 5th birthday on Monday.  I'm so excited to see them.  They came in this week on Tuesday only to stay for a bit and then have to head back home because Avery spiked a temp :-( 

Things for our last living donor are looking good result-wise.  Further testing needs to be done this week.  Our surgeon leaves the country April 15th so she really needs this transplant before then.  There are other doctors to do it, but they will NOT schedule a living donor transplant while he is gone.  That leaves 8 days.  I hope a cadaver organ becomes available.  Let's hope with a PELD of 40 one does.

40

Just got word a bit ago that UNOS granted Shelby a PELD of 40!  This is GREAT news but also scary as it is indicative of her condition.  Cmon liver!

Monday

Dr. Optimistic is on rotation this week.  That's my name for the attending because he was so positive he was going to get me a lot of answers today regarding the exception letter and our latest living donor's status.  I said "Good luck" this morning to him.  I have to give him some credit.  He did come back a little while ago to report that Dr. Superina (who is not back in town until tomorrow) was very adamant that he read the potential donor's MRI.  OK.  Gotta love that the big guy wants to do it himself, but tomorrow he'd better be all over it.  Also, Dr. Optimistic did find out that 10 centers have to reply to the exception request.  Six have replied so far; reminder e-mails have been sent to the remaining four.  So far we have 3 that have said yes and 3 have said no.  We need 5 to say yes.  That means 5 can say no as long as we have 5 that have said yes.  Now I'm feeling optimistic.  Hopefully we hear from the remaining 4 tomorrow.

Shelby's sats have stayed stable all day while at 6L of 60% oxygen.  While that's NOT normally what they take on the floor, we are able to stay.  I think acute decompensation (respiratory distress) or if she needs 7L at 70% would get us moved to the PICU.

We have a new little one in the room next to us.  This is going to be a long night.  Its already been a long day of crying/screaming.  Ugh.  

Calm Sunday

Today went o.k.  Scott and Shelby let me stay at Kohl's House and slowly get ready this morning.  I took full advantage of it knowing I would be flying "solo" here for several days.  It was a bit of a mystery getting Shelby's O2 levels in the 92%+ range.  Turns out on the 100% O2 (just right from the wall) she satted great at 4L...BUT you can only hook up a bubbler to that for humidity...and its not great humidity.  She really needs the heated humidity to help her nose not get so dry.  Everytime respiratory would switch her over to the high-flow system she would sat low.  This was the kind of system we had at home.  It took lots of tweaking, but we found out that at 60% O2 at 6L she would stay in the 92%+ range.  That's almost twice as much O2 she was on at home :-O  Still a bit questionable if she should be on the floor or the unit (PICU), but for now we're staying in good ole' room 609.  Overnight respiratory wants to try to wean down her percentage of O2 a bit.  They just made the first switch to 55% and as I type she is satting at 86%.  The nurse came in.  We shall see...