Baggage

I forgot I hadn't updated here about Addie's cardiology appointment. We saw Dr. Ikemba on March 30th for a checkup after Addie's cath. I cannot tell you enough  how amazing Dr. Ikemba is. She is kind, funny, empathic, and gives the best kind of hugs. Her bedside manner is also one of a kind. She called me before Addie's appointment and wanted me to know what a beautiful job Dr. Nugent had done with Addie's stent. She also wanted to calm any fears we had. She is the type of doctor that calls, and calls again. She cares. About Addie and us.

Addie had an Echo, x-ray, and had to wear a holter monitor home. Dr. Ikemba wanted to see blood flow in Addie's left pulmonary artery. That's the one that Dr. Nugent stented. She had blood flow there, and that's really all Dr. Ikemba cared  about. She mentioned that Addie was now pretty much a straight forward Fontan. Sounded good to me. Addie's x-ray looked good. All her coils, sternal  wires and stent lit up on the X-Ray are a reminder of all she's been through. It's really crazy to look at.

Addie's holter was also normal."Notmal, normal, normal," said Dr. Ikemba.  I'd forgotten this, but the way that Addie's heart is looped (to the left) makes her more prone to  heart block. This requires a pacemaker, and sometimes they put pacer wires in at the time of the Fontan in preparation for a pacemaker.  Addie shows no sign of heart block. Thank goodness. Addie wanted nothing to do with the holter though, and she was really embarrassed wearing it. I think this is the first time I have ever seen her truly embarrassed about something. This is the stuff that is really hard for me. I tried to make it seem like no big deal and we even got a cool little side purse she could put it in so no one could see. Luckily it was only 24 hours, and she didn't have school that Friday. I was really sad that Addie had a hard time with it.

We also learned that Addie has bronco malacia. Finally! Answers for the wheezing we thought was asthma. Her bronchus is compressed, which we learned during cath. Dr. Ikemba wants us to see a pulmonologist, but she is hopeful this will get better as she gets bigger (more room).

Play therapy is going well. We went in for Addie's 3rd visit this last Wednesday and Addie loves Karen. She said, "She has the coolest toys!!!" She made some glitter pictures and they talked some about her surgery. Next week they are going to make a calming jar and a picture frame she can take to the hospital. She mentioned also bringing in some of the the equipment Addie will have at the hospital so she can kind of get used to that. I am hopeful that Addie is going to be better prepared for this surgery. I know there is no way we can prepare for everything, but we are going to do as much as we can.

Some days I feel so anxious about all this and some days my confidence rules. Some days I cry about watching my baby go through this and some days I have no fear. Depends on the day really. I've stopped getting a good night's sleep, and I think Scott has too. Fears start creeping in at night, and I think we both don't feel fully rested. I'm choosing happy, but I'm having a hard time enjoying the day to day stuff, and I'm ready to just be done with surgery and move on. I'm sure this is par for the course. Still stinks.

Prayers for my girl and us are appreciated.

Sorry for the errors. I typed this in the tiniest font on my phone. Ha.

Much love,
Camille

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

Vulnerability

This TED talk is so good. A friend recommended it to me the other day, and I feel like it did my heart some good. Take a listen if you have some time.

http://www.ted.com/talks/brene_brown_on_vulnerability#t-1147270

Cath date

We have a date for Addie's cath. It is March 14 tentatively at 7:30 am. Of course, that can change if she gets sick or we get bumped, but my heart is preparing for that  day and time. This is definitely not nearly as big a deal as her open heart surgery, but it is a big deal to me. Addie hasn't had any procedures since her last surgery, and that seems like a million years ago. She is also really scared. She overheard my voicemail from Children's scheduling department and immediately started crying. This is when I feel like I am not an equipped parent to deal with any of this. Because, if I'm honest, I'm scared too. I am such an emotional person anyway that this just kills me. Seeing her confused and scared and nothing I say eases her worry. 

Today, I went to a new Bible study called A Mother's Heart. The woman that talked today was telling a story about her son that has a blood disorder. She mentioned he was in and out of the hospital and she often recited parts of Psalm 139 during those times: 

13 For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

I remember so many times reading those verses myself during the many storms we have endured. I'm not ready for all of this. I never have been. Addie is strong and brave, and I'm praying I can be both of those things for her as we prepare for this next chapter.