Wow...

What a wild couple of weeks we have had since we have been home. Its been great, but busy. And I'm sorry for not updating the blog in so long.

So here goes...

After a few days of settling in here at home, we traveled over to Jacksonville to meet our new doctor, who will be watching over us here in FL. We are going to Nemours Children's Clinics and our doc's name is Dr. Joyce and he is the head of the Pediatric Transplant division of Nemours. He seems to be a very nice man, and a thorough and caring physician. Also worth noting, he has no problem working closely with our physicians in Minnesota, and has actually follwed a few other children who have gone through transplant there. We also have a primary care nurse, Jodi, who we like very much as well. Good stuff. Well, except that we ended up in clinic a total of 3 times last week, and again today. More on that later.

Also, now that Gracie is back home, it seems that she has decided that she is hungry. WOOOHOOOO!!!! Our church family has been taking turns making dinners for us since we got back, and one night we were enjoying a particularly delicious potato soup while Gracie was muching on her usual cheetos. She finished her cheetos and looked at me with great interest while I was chowing down on this yummy soup. So I held my spoon out to her and she opened her mouth. I was shocked! I dripped a few drops onto her mouth and waited for her usual gagging spell and none came... she just looked at my spoon again. She ate and ate until I finally stopped her because I was afraid she would make herself sick! After a round of applause and a few big hugs, I ordered my family to "STEP AWAY FROM THE SOUP!" I put it away and declared it for Gracie's tummy only. :) That was just the beginning. Since then, she has devoured lima bean puree, mashed sweet potato patties, all of the leftover soup, mashed potatoes, pureed green beans, waffles, and anything else that she sees us eating. The thing I have noticed most is that she doesn't seem to like the baby food versions of these foods at all, she only likes the grown-up stuff- fully flavored and then mashed or pureed. Its been a wonderful change. She is now eating 3 times a day and having cheetos as a snack instead of a meal! Our dietician had us introduce formula as well, and we're hoping that with Gracie's growing appetite and the additional nutrition in the formula, we might be able to get off of the TPN within the next 2 weeks! Wouldn't that be wonderful???? Here's hoping.

My parents threw us a lovely welcome home party on Sunday afternoon and it was a lot of fun. Gracie charmed all of her guests with her big smiles behind her little mask and then conked out for a long afternoon nap and managed to miss the rest of the party. All of the adults had a great time celebrating her homecoming anyway. :) I hope to have some pictures from that to show next time.

Ok, onto the more problematic issues.
When we made it to the doc last week and had Gracie's labs drawn, her CSA (anti-rejection drug) levels were REALLY high. More than twice the amount they should be. So we had to hold her meds for a full 36 hours and then return to have the level drawn again the next day. The second draw showed a normal reading, and so we adjusted her dosage down quite a bit. According to our nurse, this is a common occurance for kids who are on this kind of med for an extended period of time.... they just start metabolizing it differently. But it made me very nervous knowing that she had such a high amount of such a strong drug coursing through her little body for a while. Yikes.
Then we got another call from our nurse telling us that Gracie's potassium levels were too high and that we needed to go back first thing the next morning for another draw. too much potassium could lead to heart issues that we don't want to be dealing with, so naturally we were worried. It turned out that there was an issue with the method of the draw itself and some of the blood cells burst in the syringe and released some extra potassium. So our second draw showed a normal level of potassium. Whew... another close call.
Then this weekend I was changing her dressing over her central line and as soon as I removed the bandage I saw that her line was coming out. The little cuff that is supposed to stay under the skin was completely out and there was nothing left to hold the line inside. So this afternoon we made the trek over to Nemours again to have a consult with the surgical team to discuss what our next step is. It looks like Gracie will be getting her central line replaced this Friday. Bummer. I hate the idea of her having surgery again... especially after the last experience. But I'm hoping that this will be better since Gracie is much more stable than she was the last time we went through this.

I'll be sure to keep you updated as I get new info from the docs. So far we are scheduled for Friday and I have no idea if we will have to go into the hospital for any length of time at all or not.

Whew... what a long post. I'll try not to take so long to post next time and then maybe I won't have to write a book to catch everyone up to where we are. :) Hope everyone is well.

xoxox