October 3, 2007

I rarely come here and post when I haven’t had a moment to sit and really think out how to say what I want to say. Today however, I am posting to use this as my sounding board and to vent. I am feeling pretty frustrated! My frustration comes from an over whelming desire to have Sadie well. Oh, what it must be like to not have to think daily about the health issues of your child. Oh, what it must feel like to have a child know what pain free is!

Someone asked Sadie the other day if she was excited for surgery so she wouldn't feel anymore pain. Her response "I don't know what it is like to not feel pain, so I don't know what I am excited for". How heart-breaking is that!!! That is MY baby, who doens't want their children to live a pain free life???

Sadie saw her Rheumatologist on the 24th. She looked good with the exception of her ankle (like I have said in the past, this is its own problem now) and her range of motion in her neck. When I asked about the results of her neck x-ray she (doc) wasn’t sure so we looked them up and read the report together. The report does show some issues, but Dr. W needed further clarification as she wasn’t sure what they meant; why this wasn’t done in June when they x-rays were done… well, moving forward. So, besides those two issues Sadie looked good. She feels good, is over-all full of energy, she has avoided all illnesses (so far no colds, etc). BUT…. The liver enzyme and kidney function tests on her last labs were elevated and so a discussion ensued over this. Her doc would like her to come off all her supplements for the next week or so to see if those have an impact. I explained I felt it that it could have been her zithromax and we took her off that after the labs so I would like to re-test her labs before we remover her from anything else. She strongly “encouraged” that I take her off the supplements. Then she said “maybe we should just take her off everything and then run labs” (meaning supplements and the one and only anti-inflammatory she is on). My response was (literally) “are you kidding?” My issue here is that Sadie is FINALLY doing good. From experience I know that if she was to go into a huge flare it takes a LONG time to get that under control and I am not willing to just throw her back into that.

Okay, so fast forward to today… Remicade. We had the greatest nurse on earth (love her!). She was awesome with Sadie and just in general a very kind and caring person. She had her IV line done (took two times, better then three as it has been the last few times) and her blood drawn. Right before we left from there, the lab report came back and to my surprise – her liver enzymes are elevated even further then before. The kidney function is about the same as last time. I am floored; I really thought taking her off the zithromax would get her back to normal, but it didn’t.

So, I had to call the rheumatology department talk to the nurse about the labs and explain that I didn’t take her off the supplements yet. She wasn’t nice… I felt like a horrible mother for going against the doctor’s recommendation. The fact is… I am super scared to take her off the supplements. I was super scared to take her off the zithromax. I do realize she needs the liver/kidney functions back to normal range; they have been elevated since June. So, I will take her off all supplements except a multi-vitamin and her anti-inflammatory starting tonight. She will re-do labs in about two weeks and we will see if it makes a difference. There is a third step if that doesn’t work, but I am not even going to worry about that step until we get there.
The next step with her neck is either a CT scan or an MRI… I am patiently waiting the answer on that issue.

Please pray for Sadie’s health… I can’t even put into words the relief it is to see her feeling like she can function. The relief it is to not have her catching every cold that walks by her. The relief to see her have energy. I am concerned, so I guess prayer for my mind to be laid at ease and trust that God has her in His hands. Thanks!