Fontan

Hello Hello! 

I was SO hoping to not have to make this post for a couple of years, and yet, here we are! I have to say, I feel very much like a small child, I just want to stomp my feet and yell "NO!". 

In November of last year, Amelia had a stent placed in her LPA to make it bigger. When they did this, it helped with a few problems she was having and the thought was that she would be able to wait until she was 4 years old, before needing the Fontan. That was wonderful to hear, because the bigger and stronger she was, the better. Plus, I got to pretend like she was perfectly healthy for a while longer. In June of this year, my family went fishing. David, Emma, Amelia, and I were walking a short distance to a lake when Amelia was huffing and puffing, and begging for me to pick her up. This was a huge red flag because Amelia wants to run and do everything on her own. Her breathing is always loud, but the second she stops moving, she breathes quietly again. Well, that day, it took her a good minute to recover....from walking. SO, I called her cardiologist and they got us in right away. They did an echo and her heart function looks great. They hooked her up to a pulse ox and had her run around. She ran for maybe 15 seconds when her oxygen dropped into the 50's. Her cardiologist thinks she is just outgrowing her Glenn surgery and is ready for the Fontan. The good news is that she isn't sick, she isn't going into the Fontan in bad shape, she's going in before things get worse. 

Although its not the 4 year mark like I was hoping, I know God's plans are bigger than my own.

She will be having her 4th open heart surgery(the Fontan) on August 30th. We will be admitted on the 27th, to start her on blood pressure medicine, to help her heart relax a bit before surgery. The surgeon(Dr. A) said that best case scenario would be 10 days in the hospital after the surgery, but to expect more like 1 month. 

I don't even know where to begin when I talk about my feelings on this. The anxiety is beyond anything I have ever felt before. I've started to experience panic attacks for the first time in my life. The simplest things set me off. The other day I saw a sign for an end of Summer party on August 27 and immediately couldn't breathe. This Tuesday I looked at the calendar and realized it was exactly 2 weeks until her surgery. 

I don't want to make this about me, but I do want to be honest. This is by far, the darkest and most scared I have ever felt. We've had a healthy, perfect Amelia at home for over 2 years and I don't want to give her back to the surgeons. I'm not so much scared about losing her(although, duh...that's there too), but I'm just not ready for the suffering again. Amelia had a cath in July to make sure there wasn't anything that needed to be corrected before sending her into the Fontan. Right before discharge, the NP was taking off her bandages. They are the giant, clear ones that are painful to take off. She had 2 in the groin that needed to come off. While the NP was taking them off, Amelia was screaming and looked up at me and cried "help". I SO want to help and take her place and make it better, but I can't and it breaks my heart. 

I think another thing that really bothers me about the Fontan is that we've always had another surgery in the future that would "make things better", but the Fontan is it. Thats our last stage surgery, but its certainly no fix. She isn't cured and she isn't set for life after this. Dr. A told us that this surgery punches the time clock for a transplant. She could be 7 when she needs it, or she could be 30. Who knows, and who knows what medical advances we will have by then. I know, I know, I know...I cannot worry about the future. Im trying to remember that today is what we have and tomorrow isn't promised for anyone, but she's my baby and I want her to have a long, healthy, full life. 

SO, David and I would greatly appreciate your prayers. Please pray that Amelia soars through the Fontan and the recovery. Pray for our anxiety leading up to the surgery and our hearts as we prepare for everything. Also pray for Emma. One of the hardest parts in all this is not having Emma with us all the time. Now that she's older, we can probably have her with us more than we did last time, but for the most part, she will be with family because she starts school one week after Amelia's surgery. Please pray for all the logistics, that we can have Emma taken care of and make things as smooth as possible for her. David will be taking the month of September off, to be with me and Amelia at the hospital. I am so grateful to have him for the whole month. 

If you read all this, pat yourself on the back! 

We love and appreciate all of you. Thanks for the love and support from the last few years. 

Love, 

Kelly