Pre-Fontan Cath Lab - 4.14.15

On Tuesday, April 14, Grace went in for her pre-fontan cath. I am always so scared of these. She had one at two days old. That night she coded and they had to resuscitate her three times. We also spent the next seven days trying to find a pulse in her right leg, the leg they entered in for the cath. They questioned at that time that we may lose her leg, it was dark purple for weeks, but seemed to recover. She also had a cath before her last surgery, they went in her left leg and had no problems recovering.

Grace was SO cute and silly as they were doing her physical and preparing to take her down to the lab. She had them all wrapped around her finger instantly. We brought down her own hospital gown that was made just for her by an amazing volunteer group. It was pink and purple with Hello Kitty on it. We surprised her with it and she loved it.

She did very well until we hit the doors of the cath lab. As an adult I think it is about the most intimidating room I've ever walk in. I can't imagine what she thought. She froze. She grabbed me around the neck and wouldn't let go. She had the greatest anesthesiologist who started playing Tangled on his phone for her. He got her a mask that was scented with root beer and they started playing Disney music throughout the whole room. They let me go in with her. I sat her on the table, told her how brave she was, laid my head on her shoulder, with the mask to her nose and we watched tangled together. She slowly got heavy and feel asleep in my arms. Once I knew she was asleep the tears began to flow. With "At last I see the light" playing overhead (the ONE Disney song that gets me every time), I lost it.  I was so proud of her, and actually of myself too. We both did so well. ;)

Before we went in we asked to speak with the cardiologist who would be doing the testing. For years Grace has dealt with MAJOR leg pain on her right side . At night time she SCREAMS and screams in pain. We usually get the leg warm and get Tylenol in her and she calms down. It's all we can do to help. For her birthday this year, my parents bought her an electric blanket. PURE GENIUS! She has only had the pain during the night 3 times since then. It's been a huge blessing. Her right foot is also 1.5 sizes smaller that her left and recently while hiking we noticed a difference in leg size. We were concerned about which leg we wanted them to go in. We were afraid of hurting right the leg even more, or hurting her good left leg. We have a good friend that has been a nurse for 20 years suggest that we ask them to run some contrast in it to see if they can see some damage. They doctor was so kind. He suggested we use the left leg and said he would love to see if they could find anything wrong with her right leg. They told us to plan on a a three hour procedure.

After only ONE hour we received a page to return to the lab. I was SO scared something was wrong. NOPE. Nothing. Everything was PERFECT and she was done. No coiling needed to be done and there was nothing to repair in order to prepare her for surgery. The pressures in her heart were even perfect. She was in the lab having her pre-surgery echo done when we got there. Dr. Gray told us that she was a poster child for the Fontan. The surgery was designed for children like her. It was a huge relief. We could have gone in and found out that things weren't just right, but it was the best option or even that she wasn't a candidate and her only option was a heart transplant. As much as I've dreaded this surgery, at this point it is a blessing that it can be done. As far as her heart goes, nothing could have been better.

They moved her to recovery and she did great. When we got to her, she was even on room air. They had planned to admit her because of her history, but the doctor felt she was doing well and said he wanted her home, not bugged by nurses all night. He didn't have to talk us into leaving. We drank lots of Rootbeer slushies, popsicles, downed some mac 'n cheese and we were on our way.

Here is the reason the update has taken so long. I've spent the last few days digesting and accepting and learning about her new trial. We have spent years talking to the doctors about her leg. We finally received an answer. I really wanted them to find something wrong, so that we had something to fix. We got part of that right. As the doctors looked at the contrast they put in her leg, they quickly found that Gracelyn has NO femoral artery.  (The femoral artery is the main artery in our legs.) At two days old the cath docs damaged it and she has since lost it 100%. I don't know how my daughter didn't bleed out, I don't know she didn't lose the leg, I don't know how she has been walking for the past 4.5 years. The doctor said it is extremely rare for it to happen and that he's only seen it one other time. My daughter truly is amazing.

Wednesday morning it all hit hard. I usually don't cry about it all around the kids, but I cried from the minute I woke up that day. My poor girls came to me before they even ate breakfast, Grace said, "Mom, we talked an we want to go to grandma's." :) They did't have to convince me, we all got right in the car. When I found out Grace was sick, nearly 6 years ago, I went though a mourning process. I mourned all the things we thought we would lose with our daughter. It lasted months. I was devastated. It's happened again. I had accepted the doctors' choice of the Fontan, simply because they said she would feel so much better and be similar to a "normal" child. The truth is, she won't feel all the way better. Ever. A lot of her walking problems weren't due to having half of her heart, they were because of her leg having such bad pain. I thought by summer next year we would be hiking all over the place. I've spent the last few days realizing none of what we have planned will probably ever happen. I cried and pouted for a bit. I've felt insanely guilty for pushing her to keep going, when I thought I was helping her to get stronger. I'll probably pout for a minute more, but I'm going to over it. I'm working on getting records sent around the nation to see what we can do to help my beautiful strong little girl. Cardiology told me nothing could probably be done to ever help her. They said that to the wrong mom. I won't stop searching for a solution. Not this mom. Not ever.

I have looked at her completely different the last few days. She is stronger than I ever knew she was. She is so much stronger and braver than she will ever know.

(Are these shirts not perfect?!?! They say, "Stay Calm - I Got this!" With the heart superman logo. I Love them!!)