Day +40

Today we were told that we can go home, the process has been started to have us released from Children's Hospital. I talked with the nurse, the dietitian, the nurse practitioner about my ideas and all were in agreement to give it a try... the attending reluctantly said that was fine. We are being sent home on partial TPN which will include the overnight hydration that Georgia needs. She will need to be hooked up for 15 hours a day as we continue to forge ahead on her eating.

You would think that I would be elated, but all day I've felt sort of blah about it all. It's time for us to go, there is no doubt about that but I am all to aware of the pressures that await me at home. I will still be counting every bite that goes into Georgia's mouth and reporting all of her calories to the out patient dietitian. We are allowed to try the at home TPN for a few weeks but if it doesn't pick up we'll be looking at the NG tube. This is a step in the right direction but we are far from done with this process. During our stay we have seen countless kids be released only to come back for a fever or infection and it's scary to feel responsible for not letting Georgia get sick.

Naturally insurance logistics played a part in getting things organized today so we will be released on Wednesday.

The latest and greatest from Georgia...

Oh, hey guys

You!

No hands!

On the lily pad with her buddy Channel

Matching hats

To walk or to wiggle....

Day +39

Alas I am getting signs that maybe I am not totally crazy... as I have been surveying nurses and other mothers about my theory on a feeding tube for Georgia I am surprised that I am yet to hear a vote for it. Georgia's eating progress is slow, painfully slow but she is eating. My points are these:
- Developmentally she is still learning about being hungry, how to eat and how to feed herself all of which would be derailed by a feeding tube. I have heard from numerous people that even their kids of half nutrition don't feel hungry enough to eat.
- We are done with chemo and what has made her appetite nil, it will be a slow road back but once you're on an NG tube is is a slow road to get hunger started again... let's just stay the course now instead of essentially pausing the current situation for a few months.
- She is actually eating, not enough calories to sustain herself so why not send us home on partial TPN (IV nutrition) the plan that is currently working.
- The attending had some concerns about her line being accessed at home with the TPN but she has to be on overnight hydration anyway so I don't see where there is additional concern.
This morning during rounds our nurse chatted with the nurse practitioner while I was talking with the doctor, she said she thought this was getting ridiculous and she couldn't see why we weren't being sent home on TPN. She agreed, I later found out that the charge nurse and several others agree as well. Tomorrow the normal work week resumes which means the dietitian will be back, I am hoping that a talk with her will get everyone on the same page and get us the okay to go home!
Home will be stressful in and of itself, there will be a lot more work for me to do but I will also be able to resume some of my abilities as a mom. Last night when the nursing shift changed our new nurse came in, we'd only had her once before and she is fairly new... she looked at me and said "you guys are still here!" Uh, not the best opening line for how exhausted and over it I was feeling. Georgia fell asleep early and I thought I would finally have a couple of hours to myself to eat and catch up on email, not so fast, the nurse came in and woke her up during vitals moments later. Although very apologetic I was hardly in the mood to tell her it was no big deal... instead I just looked at her, gave a half smile and went back to shushing Georgia. No luck, she was up so we headed out into the halls to see some of our friends. Georgia loves riding on her "lily pad" which is a painted wooden board that sits over the top of her IV pole wheels, she sits so proud holding on for her ride. We headed down on hall and met a new resident, not only to the SCCA but to the world, this little boy was 44 hours old - again I asked myself how can all of this be happening to such small innocent souls. As we continued on we talked with our friend who has six month old twins, another mom whose 13 year old just had a transplant and caught up with our favorite night nurses. As I was chatting Georgia wiggled her way to one side of her lily pad and before I could catch her fell off... I believe she hit her side first but when I saw her she was face down and instantly hysterical. I scooped her up and headed back to our room... the fall was approximately 2-3 inches from the ground, there were no marks and as we walked away she was waving through her tears. This was one of those moments that all moms have, the ones where you think, well there goes my vote for mother of the year... but when you live in a hospital those little falls come with vital checks, a call to the night doctor and a report - this is where I lost it. A nurse who has become a friend came in to see if we were all alright and I tried but failed at choking back my tears, I am ready to be done with this, I am ready to go home, I want to be able to be Georgia's mom and not have every calorie counted, every diaper weighed, every bump reported on.

Over the coming years we will talk with Georgia about this time in our lives, I imagine as she gets older the conversations will change a bit as she understands more. One thing that will be a constant in the way we describe this time is the outpouring of love and support that people have shown. I continue to be blown away by the phenomenal people that surround us.

Day +36

As I typed my title, Day +36 I have to laugh... we aren't day 36, we are just wrapping up day 45 here in the hospital. For the past three days we have been able to go out on pass which has been literally and figuratively a breath of fresh air. To be able to take Georgia home, to see her pop up and use her "walking toys" better than she did before, to see her cruising furniture, dancing and to see her recognize home has been a much needed mental recharge. I will say four hours is just enough time to get settled and want to stay just as it's time to be heading back out the door.
When this stay started 45 days ago I was so amped up and armed with questions and information, I wanted to be a part of rounds and found it really annoying when they would talk outside of our room and only come in for the exam. Today I woke up and wished they would just chat amongst themselves and skip the exam... we are having the same conversation everyday about Georgia's eating. We're still not really cutting it but things are slightly improving which just adds fuel to my "let us try it at home" fire. I don't think Georgia is going to magically start eating large volumes of food at home but I see how happy she is when we're there and know it would make at least some difference.
As frustrating as all of the calorie, food, NG tube talk can be it is certainly not lost on me that we are lucky to be able to be so concerned about this topic. Georgia's numbers are still looking really good and we got the initial results back from Georgia's bone marrow aspirate - no blasts, very, very good news. We will have to wait until tomorrow to hear about the tri-lineage of the donor cells (still not totally sure what this is about) and it will be at least a week before the cytogenetics are back.
Each piece of this process has a learning curve, not only in medical terminology but also in defining where, as a mother I fit in, which decisions are still mine and what is black and white... not the gray area that is so massive.

Day +34

Three days ago Georgia's ANC was about 2000, yesterday it was just over 9600 and today it was about 2900... this is a pretty accurate picture of my life right now, one of the nurses said the 9600 was likely a false reading... also an accurate picture.
The team has been watching her tacrolimus level in hopes of getting it somewhere between 5-10%, this critical immune suppressing drug can't be switched over to an oral dose until they strike the right balance. We were told that if she was at 5% we could go out on pass yesterday... level came back, 5.7% - pass, right? No we'd like it to be at that level longer before we take her off the IV. I thought I might burst so I took a walk after putting Georgia down for a nap... nothing in this process is concrete, not the lab results, not the information, not the goals... nothing.
Georgia's eating picked up a bit yesterday but was back down again today. A nutritionist back from maternity leave came by after rounds to discuss the NG tube. I like her, she unlike a lot of the people that are so intimately involved in the decisions that are made for my daughter is a mom. I told her that I understand why we're having the discussion, I don't want Georgia to be malnourished but I want to give her a fair chance. I proposed that we be given the chance to go home and if by the second SCCA visit (approximately four days after discharge) if Georgia wasn't eating enough we'd talk about what needed to happen. I talked to her about how hard this is and she told me that she'd cried at her baby's two month shots so she couldn't imagine how hard this is. The team has pushed to make this happen tomorrow because Georgia will be sedated for her bone marrow aspirate, otherwise she will have to be awake during the "procedure". If you ask me sticking a tube up a child's nose then down into their stomach is something that most certainly should be done under sedation of it's own. Ultimately though, the decision of if we are able to leave the hospital under Georgia's current eating conditions is not mine, but the teams.
I am so tired of being on the side lines of critical decisions that are made for my child, each morning I get knots in my stomach as I wait for the team to round on us - what will we be told we need to do today? Like so many things in this process I get the distinct feeling that once you start on an NG tube you can't just stop, you have to get the ok from about 800 strangers first.
Today Georgia's tacrolimus level came back. 5.1%, yep, the nurse said... you can go on pass! Go figure. I was thrilled to get out of the hospital and go home, right after Georgia's chest xray.
It snowed a little on the drive and once we hit the West Seattle Bridge Georgia fell asleep. At home we woke her up, she looked around and around, didn't take long to point to the stereo, I turned it on, set her down and she was dancing. A pass is only four hours so we made some dinner, played and I took a much needed shower. The pressure of all of this has been mounting for some time now, she needs to eat... all eyes on me, she needs to take her meds... all eyes on me, someone will need to know how to give her IV fluid at home... all eyes on me. This is what I want to be doing but the overwhelming pressure has me wound up pretty tight.
When I got in the shower this evening it was the first time I felt like I'd been by myself, the public showers at the hospital having me rushing through them so fast I forget to take a moment so tonight as I thought about having a moment to myself, the first real one in 43 days I started to cry. I stood in the shower bawling, not wanting to go back, feeling uncertain about what to do about Georgia's eating and feeling really, really tired.

Day +32

I have reached a point in this journey where I am ready to go home, that will come with plenty of stress that I will need to manage but it's time for Georgia... I want her to be able to go outside, to play, to crawl around, to learn to walk, to be able to eat food that didn't just come out of a cooler (since we're in isolation) and for her to just have a break. Today I waited for her tacrolimus(her immune supressant) level to come back, a few days ago it was too low for us to get a pass to go home for a bit, they raised her level 30% so I thought for sure today we'd get to go. Three o'clock rolled around and the level came back... still too low. The nurse saw the look of sheer frustration (and likely a look of wanting to climb the walls) and said, let me see what I can do to at least get the ok to go outside. I am fairly sure everyone knows we need a break from out isolation "island" so all were in favor of us going for a walk outside... only stipulation was that the pole had to come too... no problemo! Due to the construction happening the play area is closed so we headed to the Whale parking lot.. toured the top level and headed down the sidewalk, it felt so good to have the sun shining on Georgia's face.

Practicing walking

Hippie Chick

Children's hospital is full of generous people, particularly on the SCCA unit. Just about everyday there is something at the front desk that some kind soul has made for the children here to enjoy. This week I went up to take a shower and by the time I came back a nurse had brought Georgia a new hand knit hat and really nice blanket. Not knowing we'd already been spoiled I picked up a tie-dyed t-shirt, the smallest size was a 2T which I thought would make for a cute dress.
After a stressful few days Grammy & Grandpa were dropping off dinner... I waited with our door open, Georgia sitting on my lap... Grammy was the first to spot her and started cracking up... Grandpa was just a few steps behind, they were both practically crying they were laughing so hard... ahhh some much needed comic relief.

Day +31

Ah, my Georgia girl you are 15 months old today. Exactly one month ago you received your bone marrow transplant and are currently doing really well. We recently got a blood test back that showed 100% donor - really good news. This past month we've been to hell and back but you have emerged an even brighter version of yourself if that's possible.
I think your favorite word is a toss up... mama or bubble. You LOVE bubbles and can spot a bottle from a mile away. You are still quite the charmer and have such a great sense of humor... you're really funny.
I tried my hardest to get us the ok to go for a walk outside but being in isolation made that "against the rules"... I desperately wanted to say you'd had a breath of fresh air in your 14th month but I am sad to say that you didn't. I promise you this little one... as much outside time as you want as soon as we are home.
You are really regaining your strength and are standing for 10-20 seconds at a time on your own... favorite spot to do that... in the middle of the bed! Daddy and I love to play the "love" game with you - we hold our arms out and say love?... you usually smile and lean in for a hug... other times you shake your head no and smile a wide grin.
We love you so much and the ONLY thing that has made the past month bearable is you.

Day +29

Today was an all around really frustrating day - Georgia isn't eating enough, one of her med levels is too low to go out on pass this weekend... we were hoping and were told it was a realistic possibility that we could go out on a four hour pass by this weekend but now that's not an option. Her ANC is down again and her cough is still here which keeps us in isolation... I'm in need of a better day tomorrow! The best part of the day was having another "play date" with Hunter.. can you say dance party?

Day +28

This morning my fears were postponed.. because of Georgia's cough the team decided to put off her bone marrow aspirate for a couple of days. Instead Georgia had a pretty quiet day while I snuck out to the SCCA to learn how to give her IV fluids at home. This afternoon she was desperate for some socialization so we opened our door and "played"with our six feet buffer with our buddy Hunter.. he's five and loves "baby Georgia" he'll do anything to make her smile. Here are a few photos from the past 24 hours in isolation.

A little lovin' from mom

One little monkey standing on the bed

pretending to surf?

Hey... what's going on out there?
Looking out into the forbidden hallway

Hunter the entertainer

Day +27

Yesterday during rounds I asked the team about a plan to go home, they said that we would start to transition her IV meds to oral, she'd need to be able to eat a drink a bit by mouth and would need to be off IV pain meds - sheesh, I thought, we can do that! They even went as far to say we'd likely be going home next Monday!
I have been taking the eating thing slow with Georgia, she hasn't had anything in her stomach in so long I didn't want to bombard her system with too much, this coupled with the fact that late yesterday afternoon was the first time they'd pulled back on her IV nutrition so Georgia is yet to actually feel hungry... a 14 month old who doesn't feel hungry isn't going to eat a lot. She is now taking (reluctantly but taking) four oral meds and we are on a consistent ween of her pain medication - good progress right?
This morning during rounds they talked about her ANC dropping to 2000... it can bounce around they said... should I be worried... no it is normal to have it bounce... um, ok then why do I feel concerned? They said her numbers are still all within normal range but I got the sense they would like to be seeing something different. Then they talked about the fact that she'd eaten a little but they'd need to see more progress or we'd need to talk about other ways of getting food into her stomach... ah, here we are, the dreaded, makes my blood pressure rise, talk of an NG tube (feeding tube). This is a new team, not one that saw my rant last time the NG tube was mentioned... I said, oh, you don't know me and that topic... I'll get Georgia to eat. Then it was casually mentined that oh likely next week sometime we'd go home. The frustration that I was pleasantly surprised not to feel this entire time dropped on me like a ton of bricks... it's the mixed messages and feeling like you can't count on anything that makes me crazy. Deep breath, clear communication with the team... deep breath, clear communication - wish me luck.
Over the last day or two I noticed Georgia had a little cough, I noticed it the first time that she ate and chalked it up to her system getting going again... it hasn't gone away so today I mentioned it to the team. What followed was a "nasal wash" aka saline being squirted up her nose then sucked out all while I held her flailing arms and legs... they do this to test for viruses. We won't know the results until late this afternoon so until then, but more likely until her cough goes away we are in what's called isolation. We aren't allowed to leave the room, the nurses have to get our food from the floor refrigerator and from here forward if food is brought into our room it can't go into the community fridge. Any hospital staff member has to wear a special gown and mask when coming in our room.. all in all it sucks. Georgia is pointing to the door and so badly wants to be out socializing. On the upside, we were able to move to a slightly larger room so she has a little more of a play space - hours of entertainment? probably not but we'll do our best.
All of this said, my stress and anxiety level are high right now, tomorrow afternoon Georgia has a bone marrow aspirate - standard day +28 stuff. This means sedation which will forever tear me up inside, they will look to see how the new marrow is engrafting, they will look for her cells versus the donor cells and they will look for any presence of disease. I so desperately want to be done with this and resume our "normal" (what is that anymore) lives.. one word keeps coming to mind, marathon.

Day +26 - Happy Valentine's Day!

On Valentine's Day you are supposed to tell special people in your life that you love them.. we feel so lucky to have a list so long. Thank you to all of the amazing people who are supporting us through this process, we feel your love and it makes a big difference in our lives - we love all of you! Happy Valentine's Day from Brian and me... and one little girl whose all heart.

Day +24

The past 24 hours have shown huge progress! Yesterday Georgia was given the ok to drink seven ounces of water, I can assure you she enjoyed every drop! She also had a repeat ultrasound of her belly which showed everything is back to normal - liver size, flow within the right portal vein, no excess fluid in the tissue, such fantastic progress! Literally overnight her labs went from elevated to normal which allows us to take the next big step of re-introducing food and she is allowed to drink as much as she wants today. Georgia hasn't eaten in over three weeks, her nutrition has been going through her IV so her stomach literally has nothing in it. This will be a slow process as she has to prove she can eat and tolerate it before they will pull back on her IV nutrition which makes her feel full.
She is still really tired napping for several hours twice a day but when she's awake.. watch out! I can't tell you how amazing it is to see her back, my Georgia girl who has always been so full of life is laughing, talking, wiggling, waving and eating up every bit of attention that people are falling over themselves to give. We've had nurses, doctors, grandparents, other patients and parents all waving and smiling all so happy to see our girl.

Thank You Auntie Lex

Yesterday we got a package from Aunt Alexis, inside were a bunch of beautifully drawn pictures from some of her students. They certainly liven up our room - thank you to auntie and all of the students!

Day +22.... She's Back!

Today for the first time in far too long I am thrilled to tell you that Georgia... is... BACK! Moving, dancing, talking, smiling, clapping, waving... I can't get enough.

Hooray!

Waving at a neighbor

Day +22

What is wrong with the world today? Yesterday after rounds I was so excited that we were given the ok to move back downstairs... I got organized, packed up, and waited. By the afternoon I was getting a little antsy seeing that Georgia looked quite frankly, depressed. She wasn't wanting to engage, staring off and wanted to stay in bed rather than have me pick her up... I kept thinking we need to get out of here now - she needs more stimulation. Brian and I became a dog and pony show doing anything to entertain her.. music, bubbles, toys, dancing - we saw a few signs that she was perking up but still not our girl. I told the nurse that I thought she was depressed and asked if we could go for a walk... this would at least get her out of the room and interacting with people. By the evening time she seemed a little better. Any chance we're going to move I asked... the hospital is full the nurse answered. The hospital is so full that patients were being diverted elsewhere, several rooms on the SCCA floor have three kids in them, the overflow of the overflow is full, nurses are being asked to work overtime. In talking with one of the nurse managers today she said February is always the worst - colds and flu hit otherwise healthy kids and immune compromised kids can't keep up. This is part of it but the other piece is that the PICU needed our bed, five kids were having such serious surgery the next day that they were certainly headed to the PICU afterward. The fact that a children's hospital is fuller than it has been in years is so incredibly sad.
I felt lucky to have a bed in the hospital and knew we'd move in time. At 10:30pm we were told there was likely a bed on the 3rd floor, 10 minutes later we were told it was gone, another kid admitted. We went to sleep and at about 1am our nurse woke me up to say there was a bed for us. After reports were given and we'd loaded up all of our things we made our way back downstairs and were greeted with smiles and hugs. Our room is a bit smaller than the first one we started in and I couldn't care less. We did a lap around the floor at 2am and went to sleep. Today we've been out several times, have had multiple visitors welcoming us back.
Georgia's weight is down to 11.3kg, we're sticking with the diuretics a few more days but with any luck my THIRSTY girl will be able to start drinking tomorrow.
This process and new vantage point on life has changed me. I try and let the simple pleasures be the best memories, things don't need to be expensive or extravagant to be the best, who cares about status or titles, life is about taking it all in and being thankful for things that are so often taken for granted. I keep thinking about the families of the children in this packed hospital, maybe some are just here for the flu but undoubtedly some have had their worlds rocked like we did just a few months ago. I can't make sense of this hospital overflowing, it just isn't right.

Day +21

We're moving back downstairs... Georgia is down to 11.6kg this morning and has shown enough improvement that she can be taken off of the lasix drip and moved to bolus doses! Never, ever did I think I would be so excited to see the SCCA floor!

Day +20

This afternoon I hit a milestone of my own... I drove approximately one mile to U Village to take a break from the hospital. We have stayed a current combine total of 69 days and this is furthest I have been. I talked to my sister on the drive down, she said - enjoy the time away, pretend like your life is normal! This got me thinking about how my norm is so absolutely abnormal. I wandered through a couple of stores determined to find something to treat myself to. I brought a few things into the dressing room, tried on a shirt and looked up - I laughed... there is no way a new shirt or new wardrobe for that matter will take any attention away from the big dark circles under my eyes. I left that store but decided to try another, wandering around I looked at my fellow shoppers -fashionable moms pushing strollers, older ladies looking so put together and again laughed, my non-showered self with un-brushed hair looked a little un-kept for U Village midday but I didn't care. I took a new approach on my next trip to the dressing room - I only really looked from the neck down... I'll take it! With my splurge in hand I picked up a few needed toiletries and headed back to the hospital.
A few hours later I saw an opportunity to take a shower so I headed up to the 5th floor to further indulge myself. Georgia had been resting peacefully when I left so I didn't feel the need to fly through the shower. When I was getting ready I glanced at a dispenser on the bathroom wall.. lotion, we'll why not? It has been weeks since I put lotion on, what a treat! I put it on while talking to my step mom on the phone, I paused mid conversation and laughed... then proceeded to tell her that I had just put lotion SOAP all over... time to hop back in the shower. Clean once again I carefully read the label of the other dispenser... lotion... actual lotion.
Tonight after Georgia had a long nap I realized that she'd spent all day in bed, some of it playing but she needed to get out. I asked our nurse if we could do a loop around the floor - something that you need permission and accompaniment for here. We got the ok and met several nurses all so sweet to her and pulling out all the stops to grab her attention. Once back in our room we played on the mat for a bit and have now just climbed into bed. The bright lights of the nurses station are barely dimmed by the curtain hung over the sliding glass door, our "running stream" noise machine is going and we're snuggled into the single hospital bed we share. Normal is not what I would call this but it's where we need to be right now, I don't want to rush any part of this, it's about Georgia being given the opportunity to heal properly so we can someday soon move on to the rest of our life.

Day +19

First things first, Georgia's little body should be celebrated, it is working so hard and has achieved an ANC of 3479 - absolutely amazing.
It was decided this morning at rounds that we would ultimately forge ahead on our current path. Georgia's weight was 12.1kg today, down just .1kg from 24 hours before. The hope is that she is plateauing right now and that within the next several days we will start to see an improvement. Ultimately Georgia's body will choose the fluid ridding regimen, her liver and kidney function numbers are being closely watched, so far so good given the therapy she is on but if that changes so will the road to progress. She is so thirsty and is not allowed to drink anything, she's always pointing at my water bottle or the sink. I understand why but it isn't something you can explain to a 14 month old.
Today seems to be a better day, we're finally caught up on her pain medication and although I don't think she is actually in pain she showed us earlier this week she needs to be carefully weened. We now have a play mat which she tested out this afternoon, I put a pillow on each side of her, a little funny but true that she just isn't as stable with so much new weight straight out in front of her.

Georgia and her favorite bee... thanks Debby!

Sleeping beauty

G & Daddy asleep in the PICU

The belly

Day +18

I wasn't feeling up to posting anything tonight but happened to click on an old post from back in October - I read through the comments offering prayers, love and positive thoughts and decided I needed to post in hopes that those who read it will send all of that support again.
We are still in the PICU making very little progress - today Georgia's weight and belly measurement were exactly the same. The decision was made to stay the course for now but will soon need to be reevaluated if things don't improve. This afternoon she was fluid positive which means she is taking in (through her IV) more than she is peeing out. The next step would mean surgery to put in ANOTHER central line, this one bigger to support what's called CRRT, Continuous Renal Replacement Therapy, basically dialysis. This would take the pressure off of her kidneys and do some of the work for them pulling her blood out, flushing the fluid off and returning it to her - the theory sounds great, the process and procedure to make it happen are things that I do not want to do.
Life in the PICU is drastically different and more challenging - I can't use the bathroom in our room so I have to go outside the unit, I can't eat in our room which has meant scarfing down some food while Georgia has to stay in the room with either grandparents or a nurse. I am not allowed to use a cell phone except to text all of which make this lonely process all the more isolating. They have one to one nursing so our nurse spends the vast majority of her shift in our room. Sleep was limited on the SCCA floor but with vitals every two hours and constant monitoring it has now become almost obsolete. We took a walk around the unit this evening to get a little change of scenery, clearly not something commonly done up here. I have to say that I did feel thankful to be in our shoes as we passed by rooms with babies hooked up to twice as many IV's as Georgia but by the time we wound up back in our room I allowed myself to say, just because someone else may have a more serious reason to be up here doesn't mean I should take this lightly.
Tomorrow brings a new attending transplant doctor, it's hard to make these changes through such a delicate process. For the last couple of weeks we've had the attending that we'd worked with in the SCCA... ya, ya the former said arrogant ass turned Handsaker family supporter. This afternoon I thanked him for putting up with me, he said, you're her advocate - we certainly made strides in our relationship and thank him for all that he has done for our family.

Day +17

The last couple of days have brought an unexpected bump in the road.. Georgia's body just isn't letting go of the fluid that is leaking from her cells, this is essentially a side effect of the chemotherapy regimen she was on. Her cells need time to heal properly so for now we need to help them function correctly. Although she has been receiving diuretics for the last several days her weight has continued to climb - my 22 pound little girl has put on about 5 pounds of fluid the majority of which has settled in her belly and is starting to effect her liver and breathing. Yesterday our team consulted with the PICU team and decided it would be best to put Georgia on a continuous drip of lasix, a diuretic and albumin, a protein that your liver makes. The hope is that the albumin will pull back the fluid into her vascular system and the lasix will then flush it out. The only place they can do this is in the PICU so yesterday we moved up here to get things started. Naturally all of this happened just as Brian had started a trip, it's scary for us but I have no doubt even more so for him because he can't see her.
I talked with our transplant attending yesterday to make sure I understood what was happening.. Aside from her liver and kidney functions Georgia is doing really well... right? Yes. You know exactly why her kidney function is up (the lasix) so that isn't concerning... right? Yes. Her liver function is slightly elevated but doing this should alleviate the stress the fluid is putting on her liver and allow it to make the appropriate level of albumin on it's own... right? Yes.
With a new unit comes new nurses and a new team of doctors... none who know Georgia. She was put back on a dextrose drip, I talked with the resident and explained that she gets really itchy on dextrose... ok, we'll switch it. The nurses told me that Georgia would need to get an IV because all of her medications weren't compatible... this did not make me happy. About a half hour later I was told that she would actually be getting TWO IV's (in addition to her central line) because they needed to give platelets... this was too much. I asked to speak with on of the PICU docs, he agreed that two new IV's seemed excessive and encouraged the nurse to find out if lasix and albumin were compatible... guess what, they are! They decided they would pause the drip when platelets were given so she didn't need any IV's!
Overnight we were moved to a different room which I thought was the cause of Georgia's restlessness, that and the fact that she was keenly aware we were in a new place, constantly pointing to the door as if she was saying get me out of here! All of a sudden she was getting nauseous which continued through the night. I told our nurse this was not her norm, she just handed me some towels. When the shift changed this morning I was made aware of a mistake.. Georgia is being weened off of pain medication, she received a dose at 3pm yesterday and should have received two doses overnight... she didn't get any. This was the cause of her restlessness, her nausea and vomiting - she was going through withdrawal. A computer glitch, this is the reason I was given... why didn't our nurse recognize these signs of withdrawal... she was the one who told me that her dose was changing when we arrived. I spent the morning questioning her meds and the way they are given here.. in the scheme of what happens in the PICU we are pretty minor but that's no reason not to be vigilant.
I never thought I would miss the SCCA floor but I desperately do - familiar faces, an understanding of how things flow but most of all our beloved nurses.. two of which came to visit as soon as they heard we were up here. One said this morning when she arrived that our nurse from yesterday told her "I had to send your baby upstairs"... they really care about Georgia. The good news is that her weight was down by .1 kilograms, and her belly circumference was down 1cm this morning, a slow start but progress nonetheless... we hope to be back downstairs very soon!

Day +14

It's official folks, she's engrafted! Georgia's ANC is 870 today which is simply remarkable. Her red blood cell count is holding, for the first time in almost two weeks she didn't need platelets and a few medications came off the IV pole today.
Georgia's weight was up again so she is getting a few doses of diuretics to hopefully flush the extra fluid out. My little lady has a buddah belly, no wonder she isn't hungry, her belly is full! Like yesterday she has spent much of today sleeping, no doubt increasing those counts as we speak.
This process has been different in almost every way I imagined, easier in places I thought would be hard and hard in ways I'd never imagined. It feels so good to see actual progress happening.

Day +13

This little lady is on a roll... ANC was 680 this morning! Today Georgia slept most of the day but I have to believe it is because her body is working so hard on rebuilding right now. We started the process of weening off of her pain medication today as well as backing off a little on her anti nausea meds. She been interested in drinking the last few days so now we're thinking bigger... food! Yesterday she grabbed part of the muffin I was eating for breakfast and before I could get it back she shoved it in her mouth and when I asked her to open her mouth she shook her head no... uh, so much for the gluten free diet. The day before she was grabbing at crackers and took a nibble so I thought food would be a good idea to try tonight... Grammy & Grandpa brought some of her old favorites, yams and rice cereal - she turned her nose up at both. Why do I get the sense that if I put a Bratwurst a little Sauerkraut and maybe a beer in front of this kid she'd dive in.