Hannah has continued to make improvements over the last week. A great sign is that she has regained most of her personality & sassiness. It has been good to see her laugh and smile.

She has been at 100% TPN (100% of her daily calorie count) for 5 days now, and additionally has been eating great. The symptoms from the Gastroparesis seem to have subsided for now, so they have yet to give her any meds to address this. Her diarrhea has also subsided, and her stool is close to baseline. They are hoping that the nutrition (TPN) from the past week has allowed her stomach/intestines to resume normal function on their own.

Other than some minor adjustments to diuretics and transplant meds, she remains primarily on the same med schedule as at home. The only addition is twice a day Lovenox that she has to receive via injection in her thighs - definitely the hardest part of the day for all of us. The Lovenox is required to keep her PICC line from clotting off. One of the downsides about Hannah being older is that she is much more aware of everything that is going on, so she knows when it is getting time to get her shot and starts crying when the nurse comes in. We try to make it better by allowing her to pick out her own special band aid each time, but her anxiety and pain is hard to watch.

So while her GI issues have seemed to have cleared up, we are now dealing with our old nemesis - fluid. We have been slowly seeing her fluid build up over the last several days. This manifests itself in faster breathing, lowers sat levels, puffy face/eyes, weight gain, and distended abdomen. In the last week, Hannah has gained back all of the weight she lost (and then some). It's hard to know whether the weight gain is due to fluid or all of the TPN that she has been receiving. They did an ultrasound a few days ago to try and determine where the fluid was at, which showed it to be in her tissue instead of around her organs (third spacing). Last night (Saturday), her breathing again became faster, but also very labored. A chest and KUB (stomach) x-ray showed that she had increased pulmonary edema, or fluid on her lungs. They did dial back her TPN volume to 70% to help reduce the fluid intake. 

Addressing the fluid issue is always a tricky balance. She is not yet back on her home diuretics schedule. We had originally dialed back the diuretics because she was dehydrated from the vomiting/diarrhea. In addition, Hannah continues to get 24 hour TPN feeds, so we are continuously pumping more fluids into her body. We have slightly increased her diuretics the past few days, but her kidney numbers (BUN & Creatinine) are trending up, which is a sign that her kidneys are not working as well. So we have to be careful about how aggressive we get with the diuretics. Adding to the complexity is that Hannah has not been drinking much water (which is unusual for her), which could be because the TPN is making her not be thirsty.

The challenge now is to figure out a plan that balances a strategy to addresses both the nutrition/GI issues along with the increasing fluid issue. The team will have to determine if they believe her GI issues are stable enough that she can get the nutrition she needs eating on her own and thus can dial back the TPN feeds. They are also waiting on the results of a couple of stool tests that will determine if Hannah is actually absorbing nutrition from the food she is eating. At the same time, they have to determine the right mix of diuretics that will reduce her fluids but not make her kidneys more angry nor make her dehydrated.

Also, to note: Hannah got a second blood transfusion this week (we are doing lots of labs on her). She also received a IVIG (intravenous immunoglobulin) infusion.