No Santa Visit This Year

Yesterday morning we decided to take the kids to visit Santa at our local mall. Nicholas woke up feeling great, so we thought it would the perfect morning to go. We were right, when we arrived at the mall, there were only three or four families in front of us and we decided to wait in line to let the kids sit on Santa's lap. While waiting in line we began to notice that Nicholas was becoming distressed. He was crying a little, and looking somewhat worried. We thought maybe he was nervous about seeing Santa because during the twenty-minute trip to the mall he was talking and laughing and feeling great. We talked to him about Santa and explained what would happen, but he started doing worse, becoming sweaty and pale. I laid his stroller seat back until it was nearly flat and Jeff took him out of line to suction him. I stood in line for a minute or two with Ella in my arms and let a couple of families cut in line in front of us. Finally, I walked over to where Jeff and Nicholas were and Jeff said, "he's not doing good." I took one look at Nicholas and told Jeff, "He's not breathing." I gently laid Ella down on the floor beside the stroller, and yelled for the people standing nearby to call 911 while Jeff suctioned Nicholas again. Then I started CPR. By this time Nicholas was as white as a sheet and looking terrified. On my fourth breath he started coughing and crying and gasping. I silently said a prayer of thanks to God for allowing our son to stay with us. By this time, two people had phoned 911 and were giving them our information. Another man, a local police officer, asked if he could pray over Nicholas, we gladly accepted. We decided to meet the EMTs in the parking lot. Jeff scooped up Nicholas and I picked up Ella and pushed the empty stroller outside the mall. We explained to the EMTs about Nicholas's disease and asked that they check his vitals since we did not have our pulse/ox with us. They didn't have a child size finger monitor so they had a very difficult time reading Nicholas's oxygen and heart rate. They told us they wanted to take Nicholas to OHSU, but also said that we know him best as his parents, and we could refuse service if we thought he was okay. We monitored him in the back of the ambulance for about ten minutes and then decided he was ready to go home. Once again, Jeff held Nicholas in his lap the entire ride back to our house. In the car, Nicholas was back to his normal self, although much quieter than usual. We kept asking him if he was okay, and he would reply, "uh-k." Upon arrival at home we immediately hooked him up to his pulse ox which read 98 O2/132 pulse and we felt relieved. We also did a cough assist/suction treatment to get more air into him and clear out all those yucky secretions.


Now that this has happened twice in a month, we realize that we are going to need to change things in the way we travel with Nicholas. We are looking into getting a car bed for him which will allow him to lay flat while we travel. We will also be bringing his suction and pulse/ox with us wherever we go. We are hoping his pulse/ox will alert us when he's not doing well before he gets to the point of not being able to breathe. We realize that Nicholas's disease is mostly likely progressing, however, we also contribute his extra phlegm to his teething (he's cutting three molars) and his recent cold. At any rate, it is important that we have the proper equipment in place to make sure our little guy is comfortable where ever he goes. For the time being, we are ceasing our weekly two-hour round trips to Shriners for power wheelchair practice simply because we don't have the travel equipment. If any SMA parents are reading this and have any information about things we should try or equipment you use with your kids, we would appreciate your comments.

Since yesterday, Nicholas has been continuously hooked up to his pulse/ox and his stats have remained good and he has not had any further breathing problems. We are staying home this week until Christmas Eve and then we will only be traveling a mile to attend my parents' annual Christmas Eve party. We are also limiting the number of people who come into our home as we are trying to keep Nicholas feeling as well as possible without any outside germs.

Thanks to everyone for your continued prayers for our family, and especially our little Nicholas.