We met with Charlotte's neuro-surgeon, Dr. Leonard, today to discuss the results of the MRI. We had another one done yesterday because we have been faced with the decision when to do her tethered spinal cord surgery. A year ago, Dr. Leonard was on the fence about if it needed done. Today, we were hoping he was still on the fence. We were told that some physicians argue for it and some against the procedure. You would find data both ways, but when it boils down to the risk vs. benefit, it seems to make sense to perform the surgery. If Charlotte did not have the surgery, she could lose control of her bladder and bowels and may not ever get that back.
Because she already has many challenges stacked against her, we feel that the decision to do surgery is the one we will make. We were told today that he could perform the surgery next week, or we could wait up to 6 months and think about doing it then. UGH... more gray areas. He doesn't feel that waiting would hurt her in any way right now and said "I understand that your plate is full". My comment was that it is full and overflowing, but we will make a decision and discuss it with him later today.
Chris and I mulled it over all day long. To most people, it probably seems outrageous to even consider doing the procedure now. HELLO! What are you thinking. Honestly, there were some benefits to doing the surgery now, but we have decided to postpone until a later date. The decision was based solely on our children's needs. Yes, we could probably handle it (with the help of our family) and yes we would probably be a little worse for the wear if we went ahead. Sometimes it seems that when you are already carrying a huge load, what is a little more? But, we thought long and hard. We know that Charlotte's recovery (3-5 days in the hospital) would be better if we were both there and if we did the surgery now, one of us would be home with Ryan, one of us in the hospital with Charlotte. We also know that being away from him that much right now is not good for any of us. This would also postpone Chris' potential for returning to work. We are hoping that things remain stable at home so he can go back sometime soon.
The scary thing about the decision to wait is that we have no idea what the next 6 months holds. We don't know if we will lose our little boy in that time, or if in 6 months from now, he is much more ill that he is today. There are many unknowns in our lives right now, but knowing that everyone would suffer from the decision to press on with surgery next week, we are going to take our chances. As unlikely as complications are, they are a possibility and that would be absolutely devastating. Even if it only required an extra few days in the hospital, that time is so precious right now.
So, a few nights at Children's Hospital is in our future, but not next week. We will also be talking to Dr. Mantovani tomorrow regarding Ryan and Charlotte's MRI as we took images of her brain as well to see how things are looking these days. I am anxious to hear if there are any changes but know that there probably aren't.
God continues to guide us, to be our vision through such difficult decisions. With His help, we have arrived at decisions with as much clarity as possible and have opened our minds to scan the "big picture". I hope we are able to continue to do this and to carry out His plan.