Tyler's Cath
Tyler's last cath was after his fontan when he was probably 5 or 6. Echo's and fatigue can indicate a little about heart function but a cath is the real indicator of pressures and function. Tyler was a little nervous the weeks leading to his cath, asked some questions and by the time the surgery day came he felt pretty calm. We really didn't make a big deal of it and talked about it just being a minor procedure. We left Friday morning abour 7 and hit no traffic.
Got the hospital about 830 and had some time to kill before our arrival. We took some pictures and walked around the hospital. I was so humbled by how amazing it was. I sat on the family advisory board and when they had the walkthroughs and opening, I was taking care of my parents and life was too crazy to see it in person. Sitting on that board gave me insight of how much thought and heart goes into all the big and small decisions. The art, the colors, the layout, preparing for medical advancements. We saw plans, designs, artwork, etc in meetings but seeing it in person was amazing and humbling. I felt so grateful for the generosity of Benioff and so many others to create an incredible hospital that would bless kids and families lives.
We walked into rooms that had exploritorium type activities. It was so colorful, bright and beautiful. It made you feel at peace and comfortable and happy to be there.
Tyler went into his appointment and the nurses who were part of the cath team had been his nurses in the ICU and step down. We got him all set, his surgeons and anethesiologist came to talk to us. The goal was to go through his vein to check his pulmonary artery and dilate his stent. They were then going to go through his artery to check his pressures, lung capillaries, and heart. Dr. Teitel was the first one to tell me that there was a chance we would go home that night. He was the one to make the call and it was pretty incredible if we could get out of there the same day considering we weren't even first case. He felt good, wasn't anxious and spent the morning watching a movie. It was great seeing his team.
He went into surgery about 12 and it was expected to be a couple of hours.
I got a lot of stuff done for work and Danny's business. After a couple of business calls, he was done. It was around 4pm, like expected and I was able to go to his room.
Dr. Teitel came to talk to us and he did great! His stent was dilated and looked so much better. The best news was his heart pressures were good. I should have asked more. I am not sure if it is his atrial or transpulmonary pressures which is a combination of two. His pressures were 9 compared to a failing heart of 12-13. The doctors felt very good about it so I was happy about it. Usually I ask more questions but seeing how happy they were made me happy. They said often they get poor numbers so when they see pressures like Tyler's it is a day to celebrate. They talked about how their previous case earlier in the week with a boy the same age had a poor prognosis and how nobody knows the why's of how some kids do well and others don't. It might be genetics, the surgeon and some luck.
Tyler was in and out of sleep for a couple of hours and was finally alert around 7ish. He ate dinner, watched some movies as he ran the clock out of being flat for 6 hours after his cath. Patients need to lie flat for 4 hours if they go through a vein and 6 if they access an artery. With his heart set up they did both.
I had a great time talking to Diana, his nurse. His primary nurse from his norwood, Eric, came to say hello. It was so great seeing him. In some ways your nurses become like family. You have immense love and appreciation for their help, support and love to your child and your family during some of the most difficult times. I can't describe the joy of being reunited and for them to see really sick babies all grown up and doing well.
Tyler ate a lot. He got a stomach ache which eventually felt better. Probably his system just getting going after fasting, being knocked out and then eating too much. We walked around, got an x-ray around 9 and were out of the there by 1015. We got home around 1115 and it felt so great to wake up at home.
He was pretty sore this morning but is walking around and feels great except for pain in his leg. He went to a piano lesson and when we got home we got to take the tape off the entrypoint. He took a shower and feels so much better. He keeps saying how good he feels. I am sure some of it is the relief of the cath being done and maybe some of it being the change in his pulmonary artery. Maybe that is just wishful thinking on my end but I think the entire procedure is a miracle. It is amazing to me that they can fix things in the heart, place stents, expand stents, place valves with an outpatient procedure.
Overall, I feel so humbled and grateful for how great he is doing. It was so great seeing people who love Tyler and have cared for him. Asunta came down from the ICU to say hello and it was great seeing her.
Grateful for Scott and the Needhams who watched my kids so I could focus on being with Tyler. In many ways it was a very relaxing day for me. Life with 6 VERY active kids is no joke! Some days I don't know what I was thinking. Tyler was so well behaved at the hospital. He was so kind and grateful for everyone. He said thank you to everyone and never once complained. If all goes well and his heart continues to do well, we won't need another cath until he is 17 or 18 which is pretty incredible. I am not a planner and that is all pseudo world but it feels great to know he is doing so well right now. Wish I had gotten a pic of his surgeons. Totally forgot.
Got the hospital about 830 and had some time to kill before our arrival. We took some pictures and walked around the hospital. I was so humbled by how amazing it was. I sat on the family advisory board and when they had the walkthroughs and opening, I was taking care of my parents and life was too crazy to see it in person. Sitting on that board gave me insight of how much thought and heart goes into all the big and small decisions. The art, the colors, the layout, preparing for medical advancements. We saw plans, designs, artwork, etc in meetings but seeing it in person was amazing and humbling. I felt so grateful for the generosity of Benioff and so many others to create an incredible hospital that would bless kids and families lives.
We walked into rooms that had exploritorium type activities. It was so colorful, bright and beautiful. It made you feel at peace and comfortable and happy to be there.
Tyler went into his appointment and the nurses who were part of the cath team had been his nurses in the ICU and step down. We got him all set, his surgeons and anethesiologist came to talk to us. The goal was to go through his vein to check his pulmonary artery and dilate his stent. They were then going to go through his artery to check his pressures, lung capillaries, and heart. Dr. Teitel was the first one to tell me that there was a chance we would go home that night. He was the one to make the call and it was pretty incredible if we could get out of there the same day considering we weren't even first case. He felt good, wasn't anxious and spent the morning watching a movie. It was great seeing his team.
He went into surgery about 12 and it was expected to be a couple of hours.
I got a lot of stuff done for work and Danny's business. After a couple of business calls, he was done. It was around 4pm, like expected and I was able to go to his room.
Dr. Teitel came to talk to us and he did great! His stent was dilated and looked so much better. The best news was his heart pressures were good. I should have asked more. I am not sure if it is his atrial or transpulmonary pressures which is a combination of two. His pressures were 9 compared to a failing heart of 12-13. The doctors felt very good about it so I was happy about it. Usually I ask more questions but seeing how happy they were made me happy. They said often they get poor numbers so when they see pressures like Tyler's it is a day to celebrate. They talked about how their previous case earlier in the week with a boy the same age had a poor prognosis and how nobody knows the why's of how some kids do well and others don't. It might be genetics, the surgeon and some luck.
Tyler was in and out of sleep for a couple of hours and was finally alert around 7ish. He ate dinner, watched some movies as he ran the clock out of being flat for 6 hours after his cath. Patients need to lie flat for 4 hours if they go through a vein and 6 if they access an artery. With his heart set up they did both.
I had a great time talking to Diana, his nurse. His primary nurse from his norwood, Eric, came to say hello. It was so great seeing him. In some ways your nurses become like family. You have immense love and appreciation for their help, support and love to your child and your family during some of the most difficult times. I can't describe the joy of being reunited and for them to see really sick babies all grown up and doing well.
Tyler ate a lot. He got a stomach ache which eventually felt better. Probably his system just getting going after fasting, being knocked out and then eating too much. We walked around, got an x-ray around 9 and were out of the there by 1015. We got home around 1115 and it felt so great to wake up at home.
He was pretty sore this morning but is walking around and feels great except for pain in his leg. He went to a piano lesson and when we got home we got to take the tape off the entrypoint. He took a shower and feels so much better. He keeps saying how good he feels. I am sure some of it is the relief of the cath being done and maybe some of it being the change in his pulmonary artery. Maybe that is just wishful thinking on my end but I think the entire procedure is a miracle. It is amazing to me that they can fix things in the heart, place stents, expand stents, place valves with an outpatient procedure.
Overall, I feel so humbled and grateful for how great he is doing. It was so great seeing people who love Tyler and have cared for him. Asunta came down from the ICU to say hello and it was great seeing her.
Grateful for Scott and the Needhams who watched my kids so I could focus on being with Tyler. In many ways it was a very relaxing day for me. Life with 6 VERY active kids is no joke! Some days I don't know what I was thinking. Tyler was so well behaved at the hospital. He was so kind and grateful for everyone. He said thank you to everyone and never once complained. If all goes well and his heart continues to do well, we won't need another cath until he is 17 or 18 which is pretty incredible. I am not a planner and that is all pseudo world but it feels great to know he is doing so well right now. Wish I had gotten a pic of his surgeons. Totally forgot.
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