Backstreet Boys, Popeye's Chicken, and Courage
This has been a rough week. Joey had a trisomy friend pass away this past weekend and it was completely unexpected. Her death was like a punch to the gut, as Joey and she had very similar stories. I wanted so badly to see her soar-for her parents, for the trisomy community, and for Joey. She accomplished so much for her short time on this earth, and she will remain an inspiration to us for our journey. Joey's girlfriend and soulmate has also had some struggles. A simple procedure turned into a cardiac procedure, and she is now fighting a tough battle. We are desperately praying to God for another miracle to add to all the other miracles He has already shown us.
Joey was weaned down yet again to a flow of 7 liters on vapotherm, and he's doing okay with it. He will wean down to 6 liters today. Sara from OT stopped by to work with him, and her observation is that he just doesn't tolerate as much as he used to these days. It almost appeared as if he were sick, and we both reminisced at about his time in B pod, where he would just float without his nasal cannula and respiratory support for almost 10 minutes before anyone even noticed. Now he immediately decomposes once he pulls that cannula out. We both agreed that Joey's respiratory issues regressed once he repaired his hernias and added his gtube. I'm not sure why though? Was his hernia stapled somewhere that might hurt his respiratory status? Do we go down this road? He is just not the same Joey after cardiac repair.
He also had another echo-cardiogram performed and there was a concern for diastolic dysfunction. I'm still trying to figure out what this means. I had a friend describe it as his heart has difficulty relaxing and could be stiff. According to the cardiologist, there were not any medications to offer for this that is very effective, but after visiting a nurse and nurse practitioner on the cardiac floor, there are meds that are offered-maybe milrinone (not sure if this is good for long term use though)? I know I most likely misspelled that. I asked the cardiologist what the worst case scenario would be, and he said a heart transplant for those who are in very bad shape and Joey is not there. They will continue monitoring through echos to see if this progresses. We just have to pray that this progression does not happen and his heart function continues on as normal. Again, asking God for another miracle.
Prayer requests for Joey- that we can figure out what changed with his respiratory after his surgery. What did we miss? Pray that we have a light bulb moment. Pray that Joey can be comfortable and experience less agitation. Continue to pray for Joey's lungs and heart. Pray for Daniel and me, that we can have super human energy and strength fueled by God because we are running on fumes. It has been difficult to juggle, but we are doing it by the grace of God. I have felt discouraged this past week, and I need to feel God's presence or shown that He is still with us. In my head I know that He is there, but I'd like to feel this emotionally right now. I like to see progress-so it's hard to just kind of remain stagnant. I have a bracelet that I bought recently that says-"Encourage your hopes, not your fears." It's a very true statement. "Courage" is the word that is built into the word, "encourage." I think it takes a lot of courage to keep your mindset of hope and to stay positive. Fear will eat you up-but courage to me is constantly taking that fear and laying it down at the feet of Christ. It's easy to have courage when the road looks easy ahead, but man-when you have no idea what the future holds or when life gets rocky-it's easier to throw in the towel rather than to remain courageous by holding on to hope and something positive. Courage is telling yourself that you are not going to be afraid to have hope, even when the moment looks somewhat bleak, or to just face a really hard day that you may have ahead of yourself. It is very scary walking into the unknown. I never know what day or the week may bring, but I myself am praying for the courage to face each day with God-given strength.
Some fun things and funny things:
The kids and I finally tried the infamous Popeye's chicken sandwich. Daniel made some time to take Rowan to experience this moment together and also brought Claire and me a spicy and original sandwich to formulate our own opinion. The breading was incredible-very crispy and tender chicken. As for a comparison to Chick-filla-I don't think it's a very fair comparison as both batters are very different-and it's just a different mindset for chicken. Did I just manage to consolidate a blog about Joey, Backstreet Boys, and chicken sandwiches into one entry. Why yes, I did. :)
Another fun thing about last night- Joey was very playful. I looked over at him once and he had managed to put his blanket over his face, and then all of a sudden he removed it. It was his version of playing peek a boo. I was also rocking with Joey and playing and singing his usual Back Street Boys play list. An African lady walked into our room, with a very thick African accent, refilled our medical supplies, greeted us, and started singing Backstreet Boys with us. Her limited English, turned full on into Backstreet Boys lyrics, with no limitations. She was singing at the top of her lungs with us and said she loved this particular song. Did I mention she was probably 60?! There was my confirmation-Backstreet Boys is not limited to race, gender, age, and also has a VERY international presence. It was a very cute moment. I think Joey even stopped what he was doing and was awestruck by this lady!
Peekaboo!
Joey was weaned down yet again to a flow of 7 liters on vapotherm, and he's doing okay with it. He will wean down to 6 liters today. Sara from OT stopped by to work with him, and her observation is that he just doesn't tolerate as much as he used to these days. It almost appeared as if he were sick, and we both reminisced at about his time in B pod, where he would just float without his nasal cannula and respiratory support for almost 10 minutes before anyone even noticed. Now he immediately decomposes once he pulls that cannula out. We both agreed that Joey's respiratory issues regressed once he repaired his hernias and added his gtube. I'm not sure why though? Was his hernia stapled somewhere that might hurt his respiratory status? Do we go down this road? He is just not the same Joey after cardiac repair.
He also had another echo-cardiogram performed and there was a concern for diastolic dysfunction. I'm still trying to figure out what this means. I had a friend describe it as his heart has difficulty relaxing and could be stiff. According to the cardiologist, there were not any medications to offer for this that is very effective, but after visiting a nurse and nurse practitioner on the cardiac floor, there are meds that are offered-maybe milrinone (not sure if this is good for long term use though)? I know I most likely misspelled that. I asked the cardiologist what the worst case scenario would be, and he said a heart transplant for those who are in very bad shape and Joey is not there. They will continue monitoring through echos to see if this progresses. We just have to pray that this progression does not happen and his heart function continues on as normal. Again, asking God for another miracle.
Prayer requests for Joey- that we can figure out what changed with his respiratory after his surgery. What did we miss? Pray that we have a light bulb moment. Pray that Joey can be comfortable and experience less agitation. Continue to pray for Joey's lungs and heart. Pray for Daniel and me, that we can have super human energy and strength fueled by God because we are running on fumes. It has been difficult to juggle, but we are doing it by the grace of God. I have felt discouraged this past week, and I need to feel God's presence or shown that He is still with us. In my head I know that He is there, but I'd like to feel this emotionally right now. I like to see progress-so it's hard to just kind of remain stagnant. I have a bracelet that I bought recently that says-"Encourage your hopes, not your fears." It's a very true statement. "Courage" is the word that is built into the word, "encourage." I think it takes a lot of courage to keep your mindset of hope and to stay positive. Fear will eat you up-but courage to me is constantly taking that fear and laying it down at the feet of Christ. It's easy to have courage when the road looks easy ahead, but man-when you have no idea what the future holds or when life gets rocky-it's easier to throw in the towel rather than to remain courageous by holding on to hope and something positive. Courage is telling yourself that you are not going to be afraid to have hope, even when the moment looks somewhat bleak, or to just face a really hard day that you may have ahead of yourself. It is very scary walking into the unknown. I never know what day or the week may bring, but I myself am praying for the courage to face each day with God-given strength.
Some fun things and funny things:
The kids and I finally tried the infamous Popeye's chicken sandwich. Daniel made some time to take Rowan to experience this moment together and also brought Claire and me a spicy and original sandwich to formulate our own opinion. The breading was incredible-very crispy and tender chicken. As for a comparison to Chick-filla-I don't think it's a very fair comparison as both batters are very different-and it's just a different mindset for chicken. Did I just manage to consolidate a blog about Joey, Backstreet Boys, and chicken sandwiches into one entry. Why yes, I did. :)
Another fun thing about last night- Joey was very playful. I looked over at him once and he had managed to put his blanket over his face, and then all of a sudden he removed it. It was his version of playing peek a boo. I was also rocking with Joey and playing and singing his usual Back Street Boys play list. An African lady walked into our room, with a very thick African accent, refilled our medical supplies, greeted us, and started singing Backstreet Boys with us. Her limited English, turned full on into Backstreet Boys lyrics, with no limitations. She was singing at the top of her lungs with us and said she loved this particular song. Did I mention she was probably 60?! There was my confirmation-Backstreet Boys is not limited to race, gender, age, and also has a VERY international presence. It was a very cute moment. I think Joey even stopped what he was doing and was awestruck by this lady!
Peekaboo!
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