First off, our son's case is now in the hands of Dr. R - another absolutely great doctor! We had met him a year or so ago and he's wonderful with Michael and very clear in his explanations.
Dr. R measured Mike's back and explained that while normally it's great to wait until the child is 12 years old, the aggressiveness of Mike's case requires us to act sooner. Last year, when Dr. R saw Mike, he measured sections of his back that were 40 degrees off. Those same sections are now 60 degrees. WIth summer coming on and not having to worry about school, Dr. R thinks this is a good time.
Dr. R asked Mike if he wanted to hear the details of the surgery or if he wanted to leave the room. Mike wanted to stay. Eric was able to tell the doctor that the reason Michael is so "tough" with all of the information is because we believe in the Lord - strongly. That we've told Mike that God has chosen him for this. God could have chosen to heal Michael, but hasn't. I was so glad that Eric was able to let this doctor know of our faith right from the start. The doctor was encouraged to hear about our faith and admitted that it would help us a lot in the recovery process.
So, the doctor's top three priorities are:
1. Mike's safety - I think this is self-explanatory.
2. Bone healing - With NF patients, this is a real concern. Their bones tend not to heal well causing the pins and screws to "pop" which, in turn, results in more surgery. Please pray that this would not happen and that Michael would heal with no complications.
3. Straightening the back - With "normal" scoliosis", this is a higher priority. However, we've known from the beginning that the straightening will be limited due to the tight curve and rigidity in Michael's NF back. Many have you have probably noticed that Mike's shoulders are uneven. This will continue. Actually, it is Dr. R's challenge not to make the unevenness greater due to the rods, etc being put in.
There will be 2 incisions - one down Mike's back and 1 through his left side. At least 2 discs will be removed and the spine will be fused together from the back and from the front. This will not hinder his mobility in the future, praise the Lord. The doctor will use bone from Mike's ribs and from a bone bank to reconstruct and put things back together. Pins, screws, wires, and rods will now be a permanent part of our sons' spinal anatomy.
Dr. Rubrie asked us if we wanted Michael to leave while he ran through the risks of this surgery. We asked Mike and he said, again, that he wanted to stay. The risks are: death (as with most surgeries), paralysis, infection, and bone not healing. The last one is the one we would be most concerned with as the others are pretty rare. It's all in the Lord's hands and, as the doctor reminded Michael, we all will be praying before the surgery (and during) and he (doc) would appreciate the help.
The surgery will be at least 10 hours long. When Mike comes out, he will be in the pediatric ICU (PICU) for a day or two. During surgery, he will be on a breathing machine and he may or may not still be on it when he comes out of surgery. He will have a tube coming from his left side for a few days - the purpose of this tube is to drain blood away from the lung. If the lung deflates when the tube comes out, it will have to be re-inserted. Please pray this won't happen. Mike will be in the hospital for 5-7 nights, as long as all goes well. During this time, he will be allowed visitors. Those of you who know Mike - people will be his best medicine. He won't have to wear a brace or any type of cast, for which we are grateful. The doctor will keep an eye on his healing through x-rays and visits in the weeks following surgery.
As a side-note, we are blessed with a wonderful grandmother and sister-in-law who have already agreed to watch the rest of our children during this time.
Mike will have a slow summer. He may go places (not too far at first), fish, walk, etc., but no bike riding or anything else that could result in a collision. His activity level will increase as he heals and recovers, but it may be up to a year before he's back to full capacity (no sledding next winter). But, all in all, the recovery process won't be horrible. Mike is blessed to be living in this day and age. Only 15-20 years ago, this type of surgery meant being in a body cast for months at a time!
As of right now, we are very probably looking at JUNE 3rd for the surgery. We will confirm this later this week. If it's not June 3, it will have to wait until late July/early August due to the doctors' vacation schedule and Eric's wheat harvest. I'll let you know as soon as we have a confirmed date.
Michael has taken all this information in stride. He wants to get this over with and on with his life. Please pray that the Lord will continue to give him this "amazing grace!" Your prayers have been such an encouragement thus far and will continue to help us through the months ahead.
I think we'll claim the verse my dear sister-in-law shared with me today: John 4:11 - "...This sickness is not unto death, but for the glory of God, that the Son of God might be glorified thereby."
Thank you for all of your love, friendship, and prayers!