(the girls and Jack and I grabbed from Fro Yo today while we waited on Lucy's special medicine for her tummy)
Just as I was preparing my Make a Wish revealment post yesterday, Erik and I made the decision to take Lucy back to St. Jude for some ongoing stomach issues she has been having. I won't get into details, but just know that she has suffered from lots of intense stomach cramps and diarrhea. Another thing that has been concerning to us is the amount of weight she has lost. We knew that once she stopped receiving TPN, there could potentially be some weight loss. However, she has lost almost 4 pounds since she began eating on her own. So, all this combined, I knew we would all rest better if we made a visit to our favorite doctor in the world.
Lucy had to have an IV started once we got there. That was a miserable experience to say the least. She cried so much after that trauma that she fell asleep in my arms until we got to see Dr. W. Thankfully her electrolytes and vitals all looked great. Her ANC, platelets and WBC were all great, too. She did receive fluids before we left, just to be on the safe side. We didn't leave the hospital until after 9pm.
While we were there we discussed the weight loss issue and the team all agreed that she had fallen below the threshold of acceptable weight loss. Her poor little body looks so pitiful. Lucy is also not making great strides in PT either. We all feel as if that is a result of her not having enough caloric intake throughout the day. She is just too weak and her muscles don't have the fuel they need to grow. So...that being said we have some major hurdles to clear still ahead of us.
I would be remiss if I did not add that there was talk of a feeding tube. The very thought makes me sick to my stomach, but I know that something has to happen. Something has got to change.
This morning the NP called and said that Lucy did test positive for C-Diff. I can tell you that I have never been so happy to hear that my child had an intestinal disease. You can only imagine the fear that I entered the hospital with yesterday. (Stomach cramping was the major symptom that led us to her initial diagnosis. I was a wreck all afternoon.) While this is a nasty little bugger we have to deal with, it gives us some hope that within 48 hours she will begin to have relief from the diarrhea and stomach cramps. Once those subside we hope she will start to eat more. At least what she does eat will stay in her body.
So we have a game plan and we are going to watch her weight like a hawk. If we don't see improvement in the very near future, we will be forced to consider the unfavorable options before us. I know so many of you have poured your soul into praying for my little girl. For that, I am forever grateful. But if there are any prayers for her left, please ask God to grant her an appetite and the ability to fight this infection.