Wednesday, February 9, 2011
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!
Tuesday, February 8, 2011
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.
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.
Monday, February 7, 2011
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.
The belly
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 bellySunday, February 6, 2011
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.
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.
Saturday, February 5, 2011
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!
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!
Wednesday, February 2, 2011
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.
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.
Tuesday, February 1, 2011
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.
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