Update on Day 2...
Today went well. We had a long motility appointment with Dr. K. We were given new instructions on how to handle the idiopathic pseudo obstruction. When it occurs, we are to get admitted so that the medications she takes can be given I.V. Most importantly the neuropathy meds that control the pain. He also said that the neuropathy may not get better with her taking the meds through the GI tract. He is not sure that she is absorbing them... the other option is I.V. meds on a regular basis, but we will decide on that in April. Why April? Well, we have to come back here in April! Dr. K is going to scope the jejunum. He is concerned the leaking is from some sort of infection, an ulcer, or something. We are so thankful to have someone willing to look deeper into this issue. We would love to have her back on one tube instead of two! We need everyone praying that he can find a problem that is fixable! Today he also ordered tons of labs... apparently she should be getting labs done on a regular basis to be sure her kidneys, liver, pancreas, thyroid, and everything else are functioning normally. Last time we were here, he had assumed our local docs were monitoring this stuff... We are just thankful he thought to ask and was able to order the right tests! Ana did so good with the blood draw! She cried, but sat still the whole time!!! Tomorrow is the renal ultrasound and then we are off to the museums. The hospital gives us free tickets every time we come! I will get lots of pictures for you guys.Keep the prayers coming! We are so thankful to have you all praying for us. Ana's disease is doing its best to take over and with the Lords help she keeps on fighting! As things progress, she gets more and more scared. Please pray for her peace. Also, pray about this trip in April. The thought of it financially is overwhelming. I know God will provide, but it is the not knowing "how" that makes us worry.
Tired after a long day!
I am so glad to see that your trip to Cincinnati has been so positive. It really gives me hope that we will get some kind of answers for our daughter as well when we go here in the next few weeks. Maggie likes your website and was dancing to the music and calling Ana, "Bebie(baby).
ReplyDeletewww.caringbridge.org/visit/margaretreed1
Forgot to mention I totally hear you about the financial concerns over traveling so much. We have the same problem. I wished we had people that were kind enough to help us though. It seems like you you have a wonderful community willing to do that. I have a friend that does fundraising for their son and she is just chalk full of ideas. Feel free to email me any time and I can share what she has shared with me.
ReplyDeleteI'm like you though. I know that God will provide but I just want to know how and when so I don't have to worry. But He always does some how and in some way.