Today was our visit with Dr. Preston Philips, Orthopedic surgeon- spine specialist that St. Francis recruited 5 years ago from Boston. I also found out at the NICU opening that he is on the Board of Directors for St. Francis. He remember me from the time I was up visiting families and I told him I was on the Children's Hospital Family Advisory council and was at the dedication for the new NICU. If surgery was to be done in Tulsa he was our hope. We had a really good visit, he spent a great deal of time digging into Jeremy's past, checking our MRI, X-rays his office did asking me questions and answering mine. I really appreciated his patience, but I don't have a plan of what will be done at this point. I was impressed with him. It was a long afternoon and at some point my brain went numb, talking about all of the variables and the jog back into reality that Jeremy is a complicated case. We've not had anything major to deal with in 8 years. Jeremy's curvature is 75 degrees both way, we knew it was getting up there. Dr. Philips does not recommend fusing the spine, he said Jeremy's growth plates were wide open and although he is of small stature he has growing to do. Once the spine is fused there is no going back. Jeremy needs the growing rods but St. Francis is not equipped at this time to do that. This will also require surgeries as he grows to lengthen the rods until it comes to the point that the spine can be fused. He said there are only 2 places that do the growing rods. Dallas Scottish Rite is one, I told him I had called and had several people told me they only see children who live in Texas, he said that doesn't sound right. I told him we need this type of expertise here and he actually had recruited a physician from Dallas Scottish Rite to come to Tulsa but his wife got pregnant and she wanted to move back home, so he moved to Baltimore. This is being looked at so there could be the time if the rods needed extended that could be done at St. Francis. He said the other option was Washington University, and I told him we already had an appointment with Dr. Keith Bridwell on Monday and he said excellent keep that appointment. He said he practices with Dr. Larry Lenke and they are both on the leading edge of research in scoliosis. I asked him what he thought they would do, again this is only what he is thinking. He said they could possibly put Jeremy in traction for 2 weeks to a month to stretch out his spine and see how much correction they could get before surgery. This would be done in the hospital. They also have a halo traction wheelchair but I don't know if that is something that can be done at home, which would of course be my option. I do realize that I won't know exactly what Dr. Bridwell plans to do on Monday, his medical assistant told me that he likes to study each case and see what is the best treatment plan. I had to get him the MRI on CD. I'm expect to have a fairly good idea of what he is thinking and what each of these option entail as well as surgery, recovery. What I've read the growing rods are easier to recovery because you don't have to wait for the bone graft to fuse or the spine fuse.
A new note, which I knew this was more than likely coming but with all of this new findings on the MRI we know Jeremy has an underlying genetic syndrome, Dr. Kayser feels he is no longer diagnosed as FG syndrome but something else is out there. We will follow up with Dr. Kayser but it's going to be after all of this is underway.
The plan is to go to St. Louis on Sunday to see Dr. Bridwell on Monday as it appears that GOD has lead me to where we need to be as well as the surgeon. I was so hoping it wouldn't require us to go out of state, but if this is God's will it will work out.
I cried on the way home, as a mom for my son pouring my heart out to GOD openly, why, this isn't fair, why does Jeremy have to just keep going through so much in his life, why do we have to go out of state to receive care, it would be so much better here at home. I don't know the answer, I don't have any peace right now, and am back to walking around like a zombie. I just have to trust GOD, who is Jeremy's creator and wait for him to unfold the plan. I am just currently very numb and am typing this out because I really just don't want to verbally discuss this right now. I know everyone wanted me to call and update on what was happening but I can't emotionally do this right now. If I start to discuss I tend to try to diagnose the situation and my mind wonders farther than it should.
Pray for us a safe trip to St. Louis, a good visit with Dr. Bridewell.
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