Cardiology Update

This morning went really well! We left early, around 730. That is pretty unusual for us to all be out of the house that early. O wasn't very excited to go to the doctors, even though he was reassured there were no pokeys at the appointment. He cried a bit but soon we were on our way.

We drove to the same level at the same parking garage and parked in the same row as usual. We have a whole routine. It's just easier that way. Even though we have more health issues that the normal family, I am always reminded of the families that have multiple appointments weekly. We have done our time too, but wow, our visits really have lessened. 

Owen watched monster trucks for his entire echo that lasted about 45 minutes. Sis was over the dark room after about 20 minutes, and she had eaten half a banana, barbara's cereal, and mama's milk. I spent most of the time walking her, putting her on my shoulders. O cooperated so well, repositioned himself just like the tech wanted. Owen said a few funny things at the appointment... The tech asked him to move so she could see his Fontan better. He said "What's a Fon- Pam?" reminded me of Step Brothers where Will Ferrell can't say the woman's name Pam and keeps saying Pan. She also asked O if  monster trucks were his favorite. His reply? "I could watch them all day. All day, son!" Oh my... Chris and I watched the show The New Girl and that is a quote from that show that we have said one too many times around Owen. All day, son! 

BP, height, weight check

Echo check

EKG check

Re-room check

O2 sat check

He was satting between 91-94 % and his fenestration is still open. That is the surgically placed 4mm slit placed to help his heart circulate blood especially short term post operatively. It is still open which means that if it doesn't close on it's own he needs to have it closed in a cardiac cath. The Riv is going to give it a year to close on it's own. 

Owen sang him some of his favorite songs, and he now calls O his "Jukebox King" (even though O thought he said "Jokebox king". Owen's choice songs for the day were "A Horse with no Name" and Barbara Ann. The Riv gave us his blessing on preschool (starting next week, ahhh!! It's only 2 3 hour days, but it is way way way out of our bubble of comfort. He will be without us for 6 hours per week with 10 other kids! AYAYA! He also mentioned that there are quite a few kids in the area who do not have any vaccinations so there is going to be that risk in any public situation. (whooping cough, flu, pneumonia are his biggest risks, anything that affects the lungs). The good aspect of the Fontan circulation is that if he was to become ill with a respiratory issue, oxygen would be helpful. Before, with just the Glenn circulation he wouldn't tolerate oxygen as it would put too much pressure on his system.

Another good bit of news.... No more lasix! We need to watch for swollen ankles and eye area, but we are back to our basic med of 1 baby aspirin daily. 

.....And we are planning on getting the g-tube out in October! 

....Weight looking great, at 50%th percentile and 36.5 lbs. He looks skinny but he is just right!

...He will need annual liver labs but not for another 6 months. The Fontan circulation/pressures can be hard on the other organs, mostly the liver. 

At the end of the appt The Riv asked us if we had any questions. We didn't, and he asked O if he had any. Owen took a moment, then bowed his head, and said "Dear God, thank you for all the wonderful doctors, the kindle, and everything else." What a goof! We were all cracking up, and at least he was kind enough to rate the docs before the kindle!

It is really refreshing to pop the bubble of protection we have been living in. We have avoided so many social situations to protect O, to keep him healthy. It has worked for the most part, especially this last year and around his surgery. Honestly we have become pretty crazy germ phobes with people germs (but not phobic with dirt, or pets, or home cleanliness, obviously!) It has been totally worth it and I wouldn't have done anything different. He still has gotten sick, but about half the amount of times as kids out in the world. Us merging into a more "normal" world where he is out and about among germs is such a great thing for him and us. It is a HUGE control aspect that we are learning to let go of, albeit slowly.... He still will wash his hands like crazy, but he will get to be a normal carefree kid more and more. And that really is the stuff that dreams are made of!!