Fun times with Gracie...

So, Gracie's appointment on Tuesday went well. We got there and first thing we got great news that Gracie had not only maintained her weight, but she had gained weight despite having her TPN reduced! We were so excited- and so was our Nutritionist!

Gracie had a quick meeting with the doc who said she looks great, followed by her routine blood draw. She also had a repeat RSV culture (from her nose). As has become our routine, we stuck around in Jax to make sure that the blood draw was sufficient for accurate results before heading home. We got a call from our nurse and she told us that it was all good and we could head home. Also, her RSV test was negative! Yay!

We got home from our long day and Gracie immediately settled down for a long nap. When she woke up, she was screaming her head off and when I went to pick her up, I noticed that she felt warm. Oh no- not again. We took her temp and again she had a fever of 101.5. We called back over to Nemours and got Dr. Joyce on the phone and it was a dose of Tylenol and back to the Lake Shore ER for Gracie. She had another round of cultures drawn and was again given an IV antibiotic. The next morning her fever was down, but our doc sent us back to the ER for one more dose of the antibiotic again. Since then she has been fine and her normal sweet self and no fever to be found. Nothing has shown up in her cultures either. No one knows why she spiked the fever, but everyone seems to be in agreement that Gracie is ok. My personal opinion is that Gracie has become dependent on her daily routine.... she is like a finely tuned weather instrument, as Uncle Mack would say. :)

On Tuesday, our clinic day in Jax, Gracie's routine was clearly disrupted. First of all, Gracie is very "regular", if you know what I mean. She basically has a pooping schedule that begins first thing in the morning and then happens at least once or twice more throughout the day. (I hope I am not grossing our loyal readers out with this lovely topic.) Well, on Tuesday, she didn't poop at all until well into the evening. This is a huge deviation from her schedule. Follow that with a long day spent mostly strapped in her carseat and you have a baby who doesn't feel so well. Since then, she has been back on schedule and happy as a clam, so who knows. We're going to see if maybe coming straight home after our next appointment will help. I certainly hope so.

Also, the best news came yesterday. Our Nutritionist called and asked if we were feeling adventurous, and despite our fever adventures, we told her we were. So I am pleased to announce that I hooked Gracie up to her last bag of TPN tonight!!!! Woohoo! As of tomorrow, Gracie will finally sleep without being attached to any tubing or pumps. I am so excited! Of course, we will be really pushing the food and fluids on Gracie to prevent having to restart her TPN regimen, but for now, we are so pleased that she is making such excellent progress and taking huge strides in her recovery.

So to end this long post, here are the pictures I promised. Smile and enjoy.