Fontan Date

Addie had her cath on March 14th. Dr. Nugent ended up stenting her left pulmonary artery and ballooning her iliac. Him having to do anything was a little unexpected, but her cath was successful and her heart is now prepared for the Fontan. The cath day was a really long, terrible day. They mentioned the cath was supposed to take 2-3 hours, and it ended up taking more like 4.5 or 5. At about hour 3, the nurse called and said that Addie's pulmonary artery was narrowed, and Dr. Nugent was trying to figure out what to do. I started to feel extremely panicked after this phone call and was a little alarmed because the nurse used the phrase "trying to figure out what to do." During our consult with Dr. Nugent after Addie's cath, he explained that her bronchus and pulmonary artery were fighting for space under her reconstructed aortic arch. Dr. Nugent said that if he had accidentally crushed her bronchus while stenting her pulmonary artery, Addie's chances for the Fontan were basically over. I was not prepared to hear any of this, and it sounded like the possibility of him accidentally crushing her bronchus while stenting was a very likely one. I really count this as a miracle it didn't happen. Thanks be to God.


Addie's cath brought me back to reality. My attitude going into the cath was so positive. A little too positive, I think. I expected to go into the cath and be home by afternoon, which is probably never going to be the case for any of Addie's caths. We also did not prepare Addie well enough. We didn't tell her there was a possibility she was going to stay a night. She was miserable in the hospital. She was missing her sisters, and thinking she was really missing out at home. From the moment she woke up, she wanted all her bandaids, IVs, and nasal canula OFF. I had a really hard time watching her for these 26 hours. Scott and I are going to have to do a better job preparing Addie for the Fontan, if we can. I don't know if it is possible, but we are going to try. We have a consult with a play therapist, who can hopefully help us getting Addie prepared in the next couple of months.


A couple days after Addie's cath, Children's called to schedule her Fontan. It is May 30th. She is first case that day so hopefully they will get started at 7:30am.  I am praying my heart is prepared for that day. It wasn't for the cath. My emotions have been fixed on personal stuff that has happened over the last couple of months/year, and I'm done thinking about stuff that doesn't matter. I'm focused on my family and those that care for us and about us. My sweet friends bought me a book for my birthday called Brave Enough by Cheryl Strayed. It is a book of Strayed's quotes and thoughts. In the introduction, she talks about how it's common for her at book signings to be asked to inscribe copies of her books with variations of her "Write like a motherfucker," quote. Sorry for the bad language, mom. :)  She's written things like Teach like a motherfucker, Engineer like a motherfucker, Do everything like a motherfucker, etc. I was inspired. Ha.


So, without further ado.......we are going to Fontan like a motherfucker. Team Addie all the way. She is going to kick May 30th's booty. I know it.


We also need your prayers and encouragement. This journey is a hard one.


Love,
Camille