The First Appointment

3 MONTHS… 12 WEEKS… 90 DAYS… 2,190 HOURS…

When it comes to waiting for a possible life changing moment, those numbers seem huge and slow moving. This doctor’s appointment has been on our minds since it was made in March. The closer it drew, the more prominent it was on our minds. How was this appointment going to go: full of good news, bad news, or no news? So, when it came to the day of the appointment, you would think that we would be up early and on the road with plenty of time to spare before the appointment. Yet in our home, on time is early and anything less than 15 minutes is doing good. So, the fact that we left only 15 minutes or so late is good for us. Luckily many of you prayed for us that day and our experiences throughout the day reflected those prayers. The trip was smooth getting to Ohio State University (OSU) Wexner Medical Center (well except for a little misunderstanding with the gps the last couple of miles). Even though we had left 15 minutes later than we wanted, the minimal traffic that we dealt with allowed us to arrive 15 minutes before our appointment time (we always plan for 30 minutes before an appointment because we know us). The Neurology waiting area was overflowing with people when we got there because the doctor needed to get out of there early and crammed the appointments in for that day. After checking in, we waited.

Nearly an hour passed before we were called back but it didn’t seem to have been that long. As soon as we got in the room, we met Doctor Kissel and he was cutting up and joking around, it was very comforting. Katie said he was full of dad jokes, but it was good. He was obviously in a hurry but he still took the time to ask questions, answer questions and all in all had a great bedside manner. He had some good news and bad… He was aware of the drug and said that Chris was going to be put on the list at #12. Patient #1 will be getting the 1st shot within a week or 2 and they will be on a huge learning curve because this will be the first time they have done it for adults. However, as time goes on, they hope to get better at it and can move things along faster. However, best case scenario Chris will start the process in about 3 months but it’s more than likely going to be longer than that, possibly 6 months. What? Another 3-6 months of waiting…one of the hardest things to hear when you were ready to go 3 months ago. Chris will be called in 30 days or less before his shot to be set up with a research group to see how this drug works for adult patients and to get a baseline of what he can and can’t do before receiving the shot (Chris says it will be a list of things he can’t do yet). Within 30 days of this, he will be given his 1st shot and then things will go from there.

While talking to Dr. Kissel, we discussed the hurdles that some of the adult patients have been having to go through. Getting insurance to cover this drug was a big one, but he thinks ours should take less time because of our insurance company being more acceptable of the drug for adults. One thing that he wanted to check with, one for himself and two for insurance, was if Chris really did have SMA. When Chris was diagnosed in the 70s, muscle biopsies were done and not as accurate as genetic testing is now. So, he ordered a genetic test be done to confirm the diagnosis. The one other step that Dr. Kissel wanted to take before the first shot was a set of respiratory tests. So, we left Dr. Kissel and went down the hall to the respiratory therapist. After running several tests, we found out that Chris has about 30% capacity compared to 100% of a “normal” person. The therapist didn’t seem concerned and acted as if this was normal. However, it was a little discouraging to find this out nevertheless. After the respiratory therapist, we went to the lab to get the genetic test done. Being that we had gotten up late and on the road for hours Chris had not eaten or drank anything yet that day. When the phlebotomist went to draw blood in his already hard to find veins, it was nearly impossible to do so. She was very patient with us and taught us some tricks for times like this in the future. After applying a hot compress to Chris’s hand to warm him up and a quick prayer from both of us, she was able to draw the blood fairly quickly. Everyone that we talked to that day was so kind and helpful. We were all amazed at how even though there were people waiting everywhere we went, the staff did not make us feel rushed or as if we were just another person to push through the system.

After completing all of the tests needed before we left OSU, we wait. We know that God’s timing is best, but man can it be tough sometimes waiting. In the meantime, we are praying for the doctors and staff of the neurology department at OSU, the other 11 people going before Chris, and for all of their families during this waiting time. We are on God’s path so where he leads us we will follow even though it may be scary or seem to take a long time. His ways are always better. So, as we wait for the next step in our adventure, we ask that you join us in praying for those ahead of us and all the staff involved at OSU. God, please be with these people and their adventures with this process and guide the staff through the unknown as well. Only you are able to be the great physician that is needed at this time through this process and we call on your guidance. Amen.

3-6 MONTHS... 12-24 WEEKS... 90-180 DAYS... 2,190-4,380 HOURS…

THE COUNTDOWN IS ON