Nathan and I sat on the couch in our hotel room tonight decompressing from the day of travel. He was going to town on his paci; I was trying to go over in my mind the things I wanted to make sure to talk about at tomorrow's appt with Dr. Shoffner. It has been a long few months, and Nate's medical history is so long and expansive that I know I am going to forget certain questions. I rubbed Nathan's pudgy little thigh and my heart sunk thinking about the scar that is going to be on that thigh from now on.
I have written on here before about it being hard to know which tests to run in this search for a diagnosis for our son. Him having a muscle biopsy done is a very invasive test, and it has been very difficult at times to know what to do regarding this test...
Our neurologist brought up the muscle biopsy quite a few months ago, but quickly dismissed us needing to do it at this time. At a later appt, he said brought it up again but also said that he didn't think we needed a muscle biopsy, so we brushed it aside as a distant thought. Before last month's appt with him, we didn't know what we should do regarding more testing for Nathan. He was having a great few days before the appt, and when he looks good, our worries are low. I prayed so hard before that neurology appt that if we needed to search more for whatever is wrong with Nathan, that the Lord would open a door for us.
My neice Hailey had been born just a couple weeks prior to this appt and we had updated our neurologist on her abnormal metabolic newborn screening test, so he decided to look at all of Nathan's abnormal bloodwork and abnormal organic and amino acid levels...I think this was the first time he had looked at everything together. He came in the room with these abnormal levels written on a scrap sheet of paper and brought up that it was time to have a muscle biopsy if we were willing.
The Lord opened a door for us.
Nathan has had a rough month in regards to weakness, sickness and GI issues, but he has had a great week this past week. He has had a REALLY great week. He looks so strong and healthy right now. I have doubted this move to see Dr. Shoffner and have a biopsy done all week. Was this the right thing to do? We are putting our son through surgery, and he is looking so good right now. What are we doing? Sure, he has other quirky things constantly going on, but look at him! He looks so good. Why are we doing this?
When the pediatric surgery center called last Friday saying that their anesthesiologist would not do the surgery anywhere except a Children's hospital, I thought it was a way out. "Would a hospital do it on the same day?" I asked, and was told that they didn't know...I would have to be in contact with Dr. Shoffner's office. I prayed so hard that if it wasn't the Lord's will that Nate have this biopsy, that he close this door for us. The door looked halfway shut already...maybe we were too hasty to begin with. Nathan looks so strong right now.
10 minutes later, I get an email from Dr. Shoffner's office manager saying that we were moved to CHOA at Scottish Rite...at an even earlier time than previously scheduled.
The Lord opened a door for us.
We are in Atlanta and a bit nervous about tomorrow. Nathan has a metabolic test from 9:00-10:00, we see Dr. Shoffner from 11:00-1:00, and Scottish Rite called today and said that we have to come there for pre-op for Nathan from 1:30-2:30. I ask for your prayers for tomorrow...that Nathan can endure the long day; that the doctor will be given wisdom and understanding regarding Nate's case; that we can have clear heads and energy throughout the day. I hope to update tomorrow night.