I Cooked Dinner

I am not sure how to recover from a day like today, but know that I must in order to move on to the next. Because I don't have a crystal ball to tell me what is ahead, somehow, I have to keep going to be ready...

Today, I already filled you in on the catastrophic events that unraveled as the day went on. I had no idea that there was more in store. There are a lot of details I will spare you and some I may share that make you cry with me. But, it is what happened and the reality of the life we are living.

Chris got home sometime around 6pm tonight after picking Charlotte up from school. Ryan had spent some time with me on the couch once he finally woke up from his long nap of the day. I bathed him and he was somewhat content until his evening nap sometime around 5 PM. I was feeling confident in myself after handling the events of the day and decided to cook dinner. I miss cooking and putting a meal together for my family and sometimes feel guilty for not taking on that responsibility in the midst of all this. Not sure why, just sometimes think I should still be able to cook a meal. So, Chris and Charlotte get home and I decide to move Ryan from the couch to his bouncy chair on his side so we can "play" as a family together until dinner finished. When the oven buzzed, I fixed our plates, set the table and we got the kids over. Chris and I just moved Ryan while he was in his chair still to the table. When he is at our level, it is our greatest chance of actually being able to eat the food in front of us.

As I turned around, I noticed Ryan's color didn't look good. I had Chris turn on the light and then go get the O2 sat machine to check him out. Sometimes I think my eyes are playing tricks on me. But, they weren't. As we put the monitor on his foot, we have to wait for it to "sink up". Usually the lower numbers will show and then it pops up to his "normal" numbers. The low numbers didn't change, O2 sat 40, heart rate 60's and I noticed that the signal on the machine was good. I had Chris run to get my stethoscope to know for sure if it was right. Time seemed to stand still, as I listened to the slow thud of his heart and instantly knew he was in trouble. The machine now read O2 sat 35, heart rate 50. It was real.

We rushed him to the couch, Chris sprinted for the suction, cough machine and cranked his oxygen up. We pushed his medication right away and worked together to bring our little boy back. He was the palest shade of gray I have ever seen and we were terrified that we were losing him... again. We got the Wing's nurse, Nikki, on the phone and told her to come as his numbers weren't improving fast enough. Somehow, amidst my silent prayer and the commotion in the room, Ryan managed to bring his O2 sat up to 85, a number at this time that we were thankful to see. He moaned for the next 30 minutes as his O2 sat and heart rate came up, breaking my heart with every whimper. His heart rate finally peaked back to 170's and his sat to 98. He has never crashed his heart rate like that before and this may be an indicator of more episodes like this to come.

We aren't sure what triggered this. He is still having loose stools and could possibly have been bearing down trying to go to the bathroom. However, there was no messy diaper and after he was stable and we helped him go (as we have to do every day) he didn't drop his heart rate when he pushed then. So, that theory is unlikely.

In the middle of everything, our poor little girl was placed on the back burner. We had already placed her in her booster seat for dinner. Chris thought enough to put a magazine in front of her and we just kept talking to her as we scurried about to save Ryan.

When it was all "over", there really weren't any words. I struggle knowing that this will happen again. In the middle of everything, you do all you can to save him, to get him to respond to something, ANYTHING. And then, when he finally does and all you can do is sit by his side and listen to him moan, I question whether this was the time we were supposed to let him go. I don't know that I will be able to do that. He is going to have to let go first... Because there is no amount of preparation or wisdom for me to know when the time is that we are supposed to let God take his hand. I just pray that when he is ready that he never forgets the way my hand felt wrapped around his too.

All we really want for him is to be well... He isn't well anymore. He hasn't been for a long time, but as parents, it is an impossible request for us not to do everything we know to do. If we have done all of that and Ryan still does not respond, then that is when we will know... to hold our little boy.

I have no words really to describe how I feel inside. I think many of you out there probably already know because your guts are aching with ours. It is a pain I pray that others never feel, but also painfully know that others do. The worst part is that each time this happens, and he thankfully comes back, I know it will happen again. How do you recover from this, just to prepare yourself for when it happens again? Tomorrow will come and the events of that day will also take me by surprise. Tonight, I just wanted to cook dinner and enjoy it with my family. But tonight, it sat cold on the table as we prayed for our son's life.

The Hawns