We experienced our first sting of disappointment yesterday. Riley post surgery on Tuesday was an over-achiever. We had been told repeatedly in the lead up to her surgery that Tuesday would be a hard day; she could be all over the place with her stats and we should just be prepared. So imagine our surprise when Riley didn't give them any grief. She was recovering so well that the Intensive Care doctors kept saying to us that they were considering removing her stent (the stent fills the space of about 3cm of where her chest is apart, a temporary cover) and closing her chest the very next day. You can imagine how proud we were of our little girl. Some parents are proud of their child's macaroni necklace or finger painting; we are proud of our daughter having a good heart rate and blood pressure. It's strange how different your priorities are when your daughter has a heart condition. After a stellar day, we slept very well that night.
So if on Tuesday she was an over-achiever; on Wednesday she was an average student. She wasn't terrible but all of the progress she had achieved that had the doctors sitting up and taking notice had swept away. Her heart rate was now high, her blood pressure all over the place and her temperature not where it needed to be. All of the talk of removing the stent and closing the chest was now replaced with talk of just getting her to be stable. We always make sure we are levelheaded through all of her reports but it did sting a little. Add to that the fact that Jess had gotten her third day blues on her sixth day, so she was little more emotional about it. So we spent the day just watching the monitor hoping that she would turn a corner.
By the end of the day the doctors figured out the right balance of medication to get her back on track. Talk began again of maybe not closing the chest but at least removing the stent. We took it with a grain of salt. Hopeful but also knowing that things can change and being able to not get too upset about it.
Something must have changed overnight, almost like Riley realized that she had some catching up to do because she just kept improving. Her Cardiac Surgeon Nelson stopped by and was impressed. He decided that in the afternoon he would remove the stent then plan to see how that goes for 24 hours before closing her chest. We were relieved. Though the Intensive Care Doctors seemed to keep pestering him to close the chest as well. It is one of the dynamics we have noticed between the different doctors that look after Riley; the Intensivist's keep being very positive and wanting to move things along whereas the Cardiac Surgeons always want to take things nice and slow. The way Nelson described it to us is "In Surgery we are very aggressive but in recovery we are very gentle". So no matter how much they tried to push him to close the chest as well, he wasn't going to budge. We kind of like that he has a cautious approach to things but we also appreciate the enthusiasm of the Intensivists.
The afternoon came and we went home whilst they began removing her stent. Jess went for her first outing since before she gave birth to Riley to go grocery shopping(Our whole world has consisted of going back and forth between our unit and the hospital); I went home to our unit waiting for a phonecall. Two Hours passed and I must admit I was getting a little nervous. This procedure was only meant to take an hour but now we were up to two. We all know how it went the last time we were left waiting, we did not want a repeat of that. Finally Jess came home and we decided to ring the hospital to get some info. Riley's nurse answered and let me know that the procedure went well. She then let me know that they removed the stent.....AND closed the chest. "Wait they closed the chest? Like 'really' closed the chest?" I replied thinking that she meant they just pushed the skin together as a trial before closing it tomorrow. She let us know that it was "really closed". Jess and I were incredibly excited.
We raced back to the hospital to see our daughter with a little scar where the dressing had been. She looked so different. God is good isn't He! We ran into Nelson and Jess perhaps too excitedly let him know how happy she was. He looked both proud of his achievement and at the same time a little scared by Jess' enthusiasm. He let us know that he had every intention of following his original plan but then upon closer inspection realized there was no point leaving the chest open. He took the extra time to do that as well. The doctors kept saying to us tonight that Riley was an all-star today, she makes us so proud. She has been through an incredible amount in a short amount of time but she keeps fighting and pushing through.
From here they are going to start taking her off some of her medications and get her to start breathing independently so they can remove her ventilator. There is no timeline on this, could take a day or could be a few. It is completely up to Riley and how she goes. We just keep believing for the best and trusting in God. We have learned to be patient and focus on everything as it comes. We still have a long road ahead of us in the lead up to her next surgery but we are going to celebrate this little victory.
So if on Tuesday she was an over-achiever; on Wednesday she was an average student. She wasn't terrible but all of the progress she had achieved that had the doctors sitting up and taking notice had swept away. Her heart rate was now high, her blood pressure all over the place and her temperature not where it needed to be. All of the talk of removing the stent and closing the chest was now replaced with talk of just getting her to be stable. We always make sure we are levelheaded through all of her reports but it did sting a little. Add to that the fact that Jess had gotten her third day blues on her sixth day, so she was little more emotional about it. So we spent the day just watching the monitor hoping that she would turn a corner.
By the end of the day the doctors figured out the right balance of medication to get her back on track. Talk began again of maybe not closing the chest but at least removing the stent. We took it with a grain of salt. Hopeful but also knowing that things can change and being able to not get too upset about it.
Something must have changed overnight, almost like Riley realized that she had some catching up to do because she just kept improving. Her Cardiac Surgeon Nelson stopped by and was impressed. He decided that in the afternoon he would remove the stent then plan to see how that goes for 24 hours before closing her chest. We were relieved. Though the Intensive Care Doctors seemed to keep pestering him to close the chest as well. It is one of the dynamics we have noticed between the different doctors that look after Riley; the Intensivist's keep being very positive and wanting to move things along whereas the Cardiac Surgeons always want to take things nice and slow. The way Nelson described it to us is "In Surgery we are very aggressive but in recovery we are very gentle". So no matter how much they tried to push him to close the chest as well, he wasn't going to budge. We kind of like that he has a cautious approach to things but we also appreciate the enthusiasm of the Intensivists.
The afternoon came and we went home whilst they began removing her stent. Jess went for her first outing since before she gave birth to Riley to go grocery shopping(Our whole world has consisted of going back and forth between our unit and the hospital); I went home to our unit waiting for a phonecall. Two Hours passed and I must admit I was getting a little nervous. This procedure was only meant to take an hour but now we were up to two. We all know how it went the last time we were left waiting, we did not want a repeat of that. Finally Jess came home and we decided to ring the hospital to get some info. Riley's nurse answered and let me know that the procedure went well. She then let me know that they removed the stent.....AND closed the chest. "Wait they closed the chest? Like 'really' closed the chest?" I replied thinking that she meant they just pushed the skin together as a trial before closing it tomorrow. She let us know that it was "really closed". Jess and I were incredibly excited.
We raced back to the hospital to see our daughter with a little scar where the dressing had been. She looked so different. God is good isn't He! We ran into Nelson and Jess perhaps too excitedly let him know how happy she was. He looked both proud of his achievement and at the same time a little scared by Jess' enthusiasm. He let us know that he had every intention of following his original plan but then upon closer inspection realized there was no point leaving the chest open. He took the extra time to do that as well. The doctors kept saying to us tonight that Riley was an all-star today, she makes us so proud. She has been through an incredible amount in a short amount of time but she keeps fighting and pushing through.
From here they are going to start taking her off some of her medications and get her to start breathing independently so they can remove her ventilator. There is no timeline on this, could take a day or could be a few. It is completely up to Riley and how she goes. We just keep believing for the best and trusting in God. We have learned to be patient and focus on everything as it comes. We still have a long road ahead of us in the lead up to her next surgery but we are going to celebrate this little victory.
Simply God awesome!
ReplyDelete�� Here's to lots & lots of macaroni necklaces, finger paintings, love, joy, pride...etc... for the future!! ��xxx
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