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!