Today, I was so excited to go to Ian's 1st Birthday Party. We had told Charlotte all day that we were going to his party and she would clap and say "Yayyy, Ian's Party". She was very excited too and I wanted her to go and have fun with the other kids. I was hoping to go without any major problems and come back.
Well, last night, I kept having visions of myself racing back on Mid River's Mall Drive, with my flashers on, driving as fast as I can to get home in the event of an emergency. As irrational as many of our fears are, I was sure this one was too.
Our morning didn't start off on the right foot. Ryan woke us up at 6:15 with an O2 sat and heart rate drop. It wasn't as bad as the one that happened to us on Monday of this past week, that we were thankful for. Since he had never done it twice in one day, we thought we were in the clear. He also had a pretty good morning, was more content and awake more, despite us needing to give his relaxation medication every 2 hours. The past few days, if we don't, he is moaning and crying all day. So, our morning improved and I got myself and Charlotte ready to go to the party. Chris volunteered to stay home with Ryan so that I could go since we knew that it would be way too much for him.
The party was scheduled to start at 12:00, so Mom and I left sometime around 11:30. I told Chris to call me for ANYTHING. Sara and I only live about 10 min. apart. We had Charlotte in the car, and I had just driven past the St. Charles Comm. College, commenting on the beautiful fountain and how we always say we are going to take a walk there around the campus. We were a little over half way there. Then the phone rang. Chris on the caller ID... I knew that he would only call if he needed to.
My Dad's voice was on the other end of the line - "Jenn, I'm with Chris, Ryan's O2 sat and heart rate are down, we can't get them up". He told me some numbers and before I could even think straight I was telling him that I was turning around and had already whipped the car into the turn lane to pull a UE when I had the chance. A million thoughts were rushing through my head. Looking back, I think I was able to instinctively know what to do because I had already lived this moment in my head. I just didn't think I'd actual have to do it.
As I was waiting for the chance to turn around, a fire truck pulled onto the street ahead with it's lights on. Someone else, experiencing an emergency. Life is so fragile. When I finally got turned around and got going again, I zoomed down Mid River's Mall Dr. with my flashers going as fast as I could safely go. I sped through some stop lights and passed several cops that were all too focused on the other emergency going on to give me the time of day. NO ONE tried to STOP ME! I was shocked and thankful, although a cop in front of me with flashing lights for me wouldn't have been bad. I wanted to call Chris back and find out what was going on, but also didn't want to distract him from the most important job he was doing, bringing our son back.
As I drove down Pittman Hill Rd, the urgency grew. I began honking and screaming at the cars in front of me to either go faster or move out of the way. My daughter, copying everything we say these days, was doing the same. Mom was hanging on for dear life. I passed a few cars on Pittman Hill and finally made it to Towers Rd, where I drove down the center lane the entire way. Finally, we were home and as I pulled in the driveway, I felt as though my feet couldn't take me fast enough. When I was finally by Ryan's side, his O2 sat still hadn't come up, but luckily his heartrate was.
We worked with the cough and suction machine a couple more times and after several minutes, his O2 sat finally returned to normal. My adrenaline was still flowing but at least I was here, not wondering what was happening at home. I called Sara and cried as I told her that I couldn't come and wouldn't be bringing Charlotte either. I was crushed.
Mom left to go to the party and so did my Dad, Rob and his parents. Chris' dad had shown up in the middle of everything too because he was going to stay here with Chris when we were gone. We fed Charlotte lunch and prepared lunch for ourselves. Once Ryan settled down, we put him to bed too. I still felt terrible about not being at Ian's party. Even though SMA has effected our lives so greatly, there are just some things in life that I am not prepared to let it take away. Celebrating my nephew's 1st Birthday was one of them. So, bravely I took my purse and keys in my hand and prepared to have a much safer drive, back to Sara's to be with my family and celebrate the joy of life.
When I arrived, everyone was eating in the garage since the outdoor party was rained out. My sister and I shared a very emotional hug, her knowing how much I was risking to be there, and me knowing she knew how much I wanted to be there for her. My sister means so much to me and this was a moment that I wanted to witness and share with her. Not hear about later this evening, regretting that I wasn't there.
The party was very nice and I was thankful to laugh and smile at the joy on Ian's face as he opened his gifts and dove mouth first into his chocolate cake and icing. I was so glad that I came and didn't want to leave. I wanted to soak this moment up. I wanted to help my sister so much more than I was able to, but I know she knows that. I had been feeling guilty about not being able to be there for her more and I know she has said the same about me. My sister and I share a bond that is stronger than steel and a love more pure than gold. Times like these only strengthen our relationship and deepen our love and appreciation for each other. I love her more than she will ever know.
Here is a video of Ian eating his cake, the best part of your 1st birthday. Happy 1st Birthday Ian!
An update on how Ryan is doing tonight... He had another heart rate drop about an hour after I got home. Not nearly as bad as the one that I was racing home for earlier today, but we are concerned that he had 3 today. After it happened, I listened to his heart and heard a bit of an irregular rhythm. We aren't sure what is causing it. He has also had more fussy times today despite us giving his relaxation medication. We are wondering if we are missing what is bothering him, so in an effort to figure out what it might be, we have put him on Pepcid in case he is having acid reflux and we don't know it, since that can be quite painful. We are hoping for some improvement in the next couple of days. We have also cut back his rate for his feedings since the energy it takes to digest his food may be wearing his body out too. Also, any excess fluid will just build up in his lungs, and maybe that is also contributing to us not being able to get them to clear up. We are putting our heads together, the Wing's nurse and myself, trying to get the equation right. I hope we can...
My mom will be here with me all week and we will be getting things ready for the Trivia Night. With the Wing's nurses here, I am hoping we are able to leave, relax and have fun, and NOT have to rush home for an emergency.