We have so many things we want to update everybody about. First of all, the Trivia Night that we held as a fundraiser last night for Ryan and our Family was a complete success! We were AMAZED by the number of people in the room and how much love there was for our family. All of the hugs, well wishes, concerns and prayers were felt ever so strong. You have all impacted our lives forever. Those who helped organize it, volunteered, attended or sent gifts in your stead if you could not attend. You all lifted our family up so high last night and as I said, "made us smile more than we've smiled in a long time." We have many pictures and other details about the night that we would like to share with you in another post, so as I know you are, keep looking if you are interested!
Many of you were asking about Ryan last night. Some of you, we had the chance to sit down and talk with, and others, we regret not having the opportunity to do so. We have had a very rough couple of weeks with Ryan. We have seen his condition deteriorate very quickly, as I have already written about. He continues to have a lot of difficulty managing his saliva keeping his heart rate regular and is requiring Morphine regularly. He was having long crying/moaning spells and in the past couple of days, we have been up with him for hours at a time day and night, by his side, wishing the discomfort away, responding to his O2 sat and heart rate alarms and trying anything we can (usually giving medication) to help him feel better.
We have recently had a theory that maybe it was acid reflux? So we are trying Prevacid and Pepcid to help prevent that. But, the heart rate drops and the discomfort spells continued. Yesterday morning, Ryan moaned/cried in the night almost continuously from 2:30AM on and then was crying from 6AM until 9AM. We were emotionally and physically drained, but knew our strain was nothing compared to that of our little boy. He needed relief and it was our job as his parents to advocate for whatever that would be. We were hopeful for someone to tell us how to make it better and were prepared to do what it took to make it that way. We weren't sure if we would be attending the Trivia Night, just yesterday morning.
We took him to our pediatrician so she could examine Ryan as she hadn't seen him in a long time and all she knew about him is what I could convey to her over the phone. As she looked him over, he began dropping his heart rate again and this time his O2 sat went down too. Most parents know that when your child is sick, you are thankful in a way when the doctor actually sees what you see. By no means were we glad that he was struggling, but we were thankful she witnessed what we do multiple times per day. We were waiting for her to tell us what she thought it was and how we can help fix it, even if it meant giving another medication. We sat and talked after she was done and this is what she had to say...
She explained that his difficulty keeping his heart rate regular is not because his heart is failing. It is because his lungs are failing and this is a secondary problem. Ryan is in Respiratory Failure. There is no medication that will magically fix that and all we can do is what we are already doing. This news weighed very heavy. Chris and I clung to each other tight and cried as we did when Ryan was first diagnosed with SMA. Our only option now is to keep him comfortable.
Since our visit yesterday, we have increased the frequency that we are giving him morphine. The good news is that he has seemed more comfortable and has had more periods of happy awake time. He also slept well last night, which means we slept well. Chris and I both said it is the most sleep we've gotten in weeks, even though we didn't get to bed until 1 AM and were still up in the night to give him his medications. But, we both slept, well and were thankful that he did too. We also changed his alarm settings on his O2 sat machine so that when and if it does alarm, we need to be up ASAP. His heart rate drops are upsetting, but we have been told that he will not pass from a sudden drop in his heart rate. It will be gradual.
Over the past few weeks, we have been terrified of that quick moment when he would no longer be with us and that one of us, if we weren't here for one reason or another, wouldn't get here to say goodbye in time. In a strange way, knowing more about what to expect gave us some peace. We know that we are not ever traveling so far that we couldn't get there in time. Well, I guess we don't know that for sure, but we have faith that when the moment comes for Ryan to leave our arms and be taken into God's, that things will be as they should.
So, as much of our time has gone, we wait. We wait praying that we are given more days like today. Today was a Good Day. Ryan's eyes were open more today than we've seen in a long time. We were afraid that by giving him more morphine that it meant we would have less interaction with him, but that has been quite opposite. Chris has been home with us since Wed. last week. We have been so thankful to be together as a family and after the Trivia Night this weekend, we are so much more comfortable in doing so, no matter how long we have. We are hoping for much more time.
We just layed Ryan down for bed, he stayed up WAAAYY past his previous bed times. We are so happy that he is happier and that we can really shift our focus to what is most important now. We will do all we have done to keep him as healthy as we can but will not spend time trying to fix him. Just love on him every chance we get and keep him as comfortable as possible. Ryan's strength has been just amazing. He wants to spend more time with all of us too...