I wrote this down for us and our kids as a journal entry. Darren and I debated on whether to post this because it's so personal and I probably will take it off in a few days. We decided to post it with the idea it could help another family in a similar situation.
I haven’t felt like doing this post because it’s a day I don’t like to think about but I know people would like to know about the day Karson passed. Maybe if I write about this it will help me with the grief and I won’t have to tell this story again.
It was Saturday January 8th and Karson started showing signs of distress. His sats (O2 level) were low 90’s and he already had about 5 liters of O2 running through his Bi-pap. The next afternoon I had him on 10 liters of oxygen and that’s the highest our concentrater would go. I had checked his temp and it was almost 103 and his Heart Rate was ranging from 150’s to 170’s so I knew he had a virus . I did the cough assist more because it seemed to be respiratory since his sats were so bad but when I listened to his lungs they sounded clear. We all knew, even Hadley, that no matter what we weren’t taking him to the hospital. Sunday night I slept with him (thank goodness for his new bed) but not soundly because I listened to him making a sound of distress. I was giving him Morphine to take away the hunger for air but he still made the sound of distress. The next couple of days his heart rate and sats were doing better but he was still in distress even with having Morphine every 2 hours. We just kept thinking and praying that it would pass. I continued to sleep by him the next few nights. I’m so glad for the chance to lay by him and hold his hand and snuggle close . Darren and I have talked many times about what we would do if Karson was suffering. We decided long ago that we would always do what’s best for Karson, even if that meant taking off his Bi-pap and letting him go. Well that early morning we were talking about it again not knowing what to do, so we knelt down and prayed and then went to bed. . Soon after that I woke Darren up because I was so worried about Karson. We wanted to see if this would pass but he was really struggling. Once again we were on our knees pleading with Heavenly Father to have Karson tell us what he wanted us to do. About 15 minutes later he got even worse. I then decided to call Dr. Swoboda so she could listen to his breathing. She said that his stomach was probably shutting down so the Morphine I was giving him wasn’t being absorbed. She told me to give him a shot of Morphine in his leg and to call her back to see if it helped. Within 5 minutes Karson was the most relaxed that I had seen him in 5 days. He stopped making that distressing sound and was able to go to sleep. Dr. Swoboda had then called back and was asking me if we were thinking that it’s time to take the Bi-pap off. I looked over at Karson and I thought to myself I can’t do it . She then told me that either way her ,Whit, and Abby were going to come and see us because of how much they love us and Karson. I hung up the phone, looked at Karson and thought to myself I’m not doing it today. A few hours later they arrived and the first words out of my mouth was “I’m not doing it today”. Dr. Swoboda started to examine Karson and couldn’t find anything that would be causing this. She did bring to our attention that Karson wasn’t even trying to breathe the bi-pap was just blowing the air in. His poor little body was worn out. She then talked to us about taking the bi-pap off because she didn’t want him to have a respiratory arrest at 3 a.m. and have it turn out bad. I always thought that I was doing what was best for Karson but I realized at that moment that time I was thinking of myself. I saw how relaxed he was and I thought that I could continue to give him shots and everything will be fine. Darren knew that it was time when I had given Karson the shot of morphine in the leg, Karson just cried and cried because it was so painful for him and if that is what it took for us to keep him here Darren was not willing to put Karson through that. But for me it took Whit telling me to take my feelings out of the situation and focus on what Karson wanted and what was best for him. It was at that moment that I looked at Karson and I just knew that he was so tired and he had fought for so long to stay with us. I then received a confirmation that it was time. We both had come to the heartbreaking, life altering decision that I wish no parent ever had to make, it was time to let our sweet baby boy go. Then Dr. Swoboda gave him a shot of Versed and another shot of Morphine to help him relax so he wouldn’t freak out when his bi-pap came off. A few minutes later, Dr. Swoboda began to take the bi-pap off and I stopped her because I needed to be the one to take it off, so I finished taking his mask off and he didn’t react at all. It didn’t take long for his color to change and for the first time in over two and a half years I picked up my baby without anything to support under him. I held him while Darren and I hugged and kissed him and told him how much we loved him and how proud we were of him. Within seconds he stopped breathing and finally I was able to hold him the way I have wanted to ever since he was diagnosed, like a normal little kid. I put his head on my shoulder with his chest against my chest and just held him. Darren then held him and even after 10 to 15 minutes his heart was still beating, but shortly after that he did pass away in his Daddy’s arms. Unfortunately, we were rushed because Hadley had a short day at school and we didn’t want her to see him. Darren then wrapped him in his blanket and carried him out to Dr. Swoboda’s car. It was very comforting to have her take him. He then went to primary’s to have an autopsy to help with SMA research. To this day everything is in the same place even his feeding bag and the garbage that was in the trash can. I don’t know if and when I could ever move or throw anything away. We now know that it doesn’t matter how long you have to prepare for the death of your child it doesn’t make it any easier.
