Yesterday's appointment
Yesterday Bela and I spent the day at St. Joe's. When I pulled into the parking garage she cried, 'no, no, no'. She was NOT happy to get her vitals done. She took off down the hall, threw a tantrum, then threw up everywhere. After awhile she calmed down enough to take her pressures. She loved her echo and happily watched Elmo during it, and smiled up at Gary who could sing along to every song.
The verdict: Tricuspid valve regurgitation looked slightly improved! Yeah!
Aortic valve still looked bad, and her upper (arms) and lower (legs) pressures were 18-20 points different, and they worry at 20-40 points different. Her aortic narrowing is causing the difference. I was told signs to look for if the pressure increases. I'm prepared, and I'm not worried. They may have to do a cath to balloon open the aorta if problems do arise before next surgery, but hopefully we won't have to do anything until then and combine everything with the surgery. Balloon the aorta, work on the valve, and do the Fontan surgery.
Surgery is tentatively scheduled for next summer, about a year from now. It was weird to hear that they sat down and discussed her case and came up with a date, but great to hear that it isn't for another year!
Her weight was up over a kilo! About 3 pounds! We exchange progress eating orally for pounds gained, but it'll all work out in time..
Overall it was a good appointment. I am so grateful for the care she receives and the investment they have taken in her and her little heart. She is loved there and we so love them..
I talked for a minute to a 29 year old woman sitting in the waiting room. She had just had pacemaker wires put in over the weekend. She had had 4 open heart surgeries during her life and said she's going strong. She said 'your daughter has a much better chance than I did when I was born, and I'm doing great." I struggled not to cry and told her thank you. Sometimes in between appointments I want to forget that there are things going on inside Bela's heart that are terribly wrong, but appointments force me to face it all and bring all my fears right up to the surface. It's always overwhelming to me, and I was grateful for her encouragement.
The verdict: Tricuspid valve regurgitation looked slightly improved! Yeah!
Aortic valve still looked bad, and her upper (arms) and lower (legs) pressures were 18-20 points different, and they worry at 20-40 points different. Her aortic narrowing is causing the difference. I was told signs to look for if the pressure increases. I'm prepared, and I'm not worried. They may have to do a cath to balloon open the aorta if problems do arise before next surgery, but hopefully we won't have to do anything until then and combine everything with the surgery. Balloon the aorta, work on the valve, and do the Fontan surgery.
Surgery is tentatively scheduled for next summer, about a year from now. It was weird to hear that they sat down and discussed her case and came up with a date, but great to hear that it isn't for another year!
Her weight was up over a kilo! About 3 pounds! We exchange progress eating orally for pounds gained, but it'll all work out in time..
Overall it was a good appointment. I am so grateful for the care she receives and the investment they have taken in her and her little heart. She is loved there and we so love them..
I talked for a minute to a 29 year old woman sitting in the waiting room. She had just had pacemaker wires put in over the weekend. She had had 4 open heart surgeries during her life and said she's going strong. She said 'your daughter has a much better chance than I did when I was born, and I'm doing great." I struggled not to cry and told her thank you. Sometimes in between appointments I want to forget that there are things going on inside Bela's heart that are terribly wrong, but appointments force me to face it all and bring all my fears right up to the surface. It's always overwhelming to me, and I was grateful for her encouragement.
Comments
I know how easy it is to forget about their broken hearts between visits.. then we are so quickly reminded at each visit. I'm sorry Bela had a hard time going. :(
Owen has been eating really well orally, but never more than a couple hundred calories a day. I just take it as it comes and pray that one day... it'll all work itself out!
I think about the things that you face everyday and I am amazed at you and your family. It brings tears to my eyes when I hear about your trips to the doctors and the things you have to endure, but I can't think of anyone better to help Bela through this. You are amazing and a constant example of love, patience, courage, and faith! I love and miss you!
rgibsonfamily@gmail.com
Thanks so much and wish you and your family all the best!
Devon
You can reach me @ Soulcracked@hotmail.com
I don't know if this is encouraging or not, but I am a 29 year old woman (sniff sniff) who has had three heart surgeries- AND have had 4 kiddos. Maybe it's not encouraging in that you know how one of those kiddos turned out.. but I was told I wouldn't have ANY kids. So take that heart defect!! ;-)
Being a heart mom is WAY worse than being the patient- for sure!
Bela is just as darling as ever- so sweet!