What a day

Wow would be an understatement. Today set our new reality in gear.......

I dropped Noah and Lane off at Primary Children's at 6:30 and then went to work. Thankfully I only had to work for an hour. Noah's surgery was scheduled for 8:00. I figured by the time that I got there they would have already taken him back, but thankfully they were just coming to take him as I got off the elevators. Lane and I got to carry him until we "parted" ways. I of course fell apart.

We went to the waiting room and as we were getting settled in Abby (Dr. Swoboda's nurse) came in. I was so glad to see her face and finally meet her in person. She explained to us that they were going to get started with his EMG and then Dr. Smith would take over and do his tubes. After she left Lane and I moved to a more secluded area in the waiting room. As we sat waiting, there were so many other parents anxiously waiting. There was a mother across from us crying and I couldn't help but wonder what devastating news she had.

Dr. Swoboda and Abby met us in the waiting room when they were finished with the EMG. They explained to us that Noah has a limited amount of active motor neurons and that they are actively degenerating. I thought that I would be able to handle this day but I was wrong......very wrong. So as we kept talking we went over some basic information such as Noah's growth chart. He has fallen way off the chart from where he should be and is malnourished. This decreases his energy, creating more problems for his already fragile little body. It also causes the progression to speed up. So, unfortunately he will have to have another surgery to place a feeding tube in a few weeks.

At this point I was completely overwhelmed. As Abby finished talking to us, Dr. Smith came to tell us he was done and Noah did great. He told us that both of Noah's ears were full of infection again, so now that he has the tubes he should be feeling a lot better. Shortly after they left, a man said that they could take one parent back, so I went. As the gentleman was taking me and two other moms back I saw Abby coming back down the hall. She put her arm around me and told the man "I'll take this mom." When we walked through the doors to the PACU I could hear our sweet little boy wailing. He was so angry! I got to his bed and they told me to go ahead and pick him up. Dr. Swoboda was at his bedside trying to get another EMG reading from his wrist. I held him until she finished, then they moved us to the regular recovery area and Lane was finally able to come back. He fell asleep for about an hour and then woke up starving. After he ate, they checked him over again and we were discharged.

Immediately after we left recovery we headed down stairs to meet Dr. Swoboda and Abby in the SMA clinic. We first met with the nutritionist who went over a lot of different things with us and different things to try. After we finished with her then we went to the cafeteria to get lunch. As we were eating Dr. Swoboda stopped by with a fellow SMA dad. It was great to meet someone that has personal experience as a parent. I am hoping to stay in touch with him and his wife as I think we could both benefit.

After eating we went back to the SMA clinic and met with a genetic counselor who went over the genetics of SMA. It truly was some great information.

They will be setting us up for Noah to get a cough assist machine and some other necessary things such as a referral to a PT so that we can get Noah set up for a wheelchair and therapy.

After 11 hours at the hospital I don't think I feel any better about any of this. I still have this what do we do next feeling....

I guess we can only take it one day at a time. I am numb and completely overwhelmed.