Last Monday night I felt ill. I have not felt this kinda of feeling in a while. I cried at the silliest things, felt sick all day and when I went to sleep all I could think about were the things that COULD go wrong the next day. We were leaving bright and early for CHOP to have a full cardiology appointment.
Laying in bed all I could think was...
"what if his heart function got worse? What if that valve looks worse? What if they say he needs his fontan NOW? What if they admit us? We didn't go to the zoo or the aquarium yet! We are planning a superhero birthday party...what if he isn't home to go???" WHAT IF??????????
When I was a teacher in a classroom everyday with first graders, I use to tell them to keep their WHAT IF questions to themselves until they happened. We would deal with them together when we needed to.
"Mrs. Ross, WHAT IF my seed doesn't grow? WHAT IF I don't finish on time? WHAT IF I am sick and I can't go on the field trip....." Funny how we have such a hard time taking our own advice. Pushing away those WHAT IF's is easier said then done!
My anxiety level was through the roof as we pulled into the parking garage at CHOP. I was so distracted by my own worries that I left the house without a binky (very important for Xavier when he is scared) and the STROLLER of all things. Poor Nate had to do most of the carrying our 22 pound, solid toddler through the hospital...he did it with a smile on his face!!!!
We walked into the outpatient center (which still has a huge poster of our boy in the waiting area..I had to fight the urge to take yet another picture of it) and waited to be taken back. My anxiety is not just what will the outcome be, but just how bumpy will the road be???? Xavier is NOT a fan of doctors or nurses, or any person who might resemble one. He likes people, but likes to be in control of the situation, going up to and playing with them when he is ready. After 6 months, he is just now comfortable with our therapists. So getting accurate test results are NEVER easy. We usually have to stand on our head to just get a few good pictures of his heart, and forget about an EKG..we usually only get one when he is sedated
The nurse called us back and as soon as X saw the pulse ox, he cried (we no longer have one at home, I really think he would get better at having it done if we had one at home...yet another point in my argument to get the doctor to write us a script for one!!!) Blood pressure was first...NIGHTMARE! He hates it, which I think most kiddos do. I really don't care for it myself. We got one in the leg, but the arm was a no go. He also fought the pulse ox, however it was better. We got a number of 78, but the nurse said it was not accurate, because he kept his toe bent and moving the whole time. The doc, just by looking at him said it was at least 80-82. That is just about where he sits normally. We weighted him, and although he is getting longer, we can't seem to get away from 22 pounds. That is very frustrating!!!
Finally it was echo time! We walked back to the room and he got very tense. I sat on the table and held him in my lap...He kept trying to struggle to sit up. We put the Disney Channel on the TV, gave him some milk and he just laid down on my chest. And he was perfect. I prayed through the whole thing. He laid there for 25 minutes and let the tech get all the pictures she needed...He didn't even make a whimper when she lowed the table so we were laying flat so she could get under his chin. He just let her do what she needed to do. When she was done, we praised him over and over for his good behavior. I was so proud of him. As we were walking out, I told Nate there is NO WAY he is gonna be so this good for the EKG...We just used up all our perfect child points!!!
We walked back to the room and broke out the i pad. He sat so nicely and played. When the EKG tech came in, I was happy to see she was young and cute...just how X likes his nurses!!! She was so sweet with him. She let him sit on my lap with the i pad and in a soft voice she talked with him about the game he was playing and lightly placed the stickers on his chest. He watched her as she hooked up the wires, but never tired to take them off or get away. Before we knew it, she was done and taking the wires off. He helped her take the stickers off and put them on Daddy...He was just so perfect!!!!
The day continued to go well when he allowed not only our cardiologist, but a doctor shadowing her to examine him and listen to his heart. Our cardiologist let us know that his heart function was still good, his valve was leaking the same and that from a clinical standpoint he looks great. She feels we need to do the third stage now while his function is good so that we don't risk wearing his heart out. She is not sure about the valve repair, our surgeon will make the call when Xavier is open and on the table. He needs to look directly at his heart to decide what type of repair, if any, he needs. The type of Fontan Xavier will have is called extra-cardiac. I am still in the process of learning what exactly will happen during this surgery. It is all very intense. But our cardiologist thinks that Xavier will do well and that we should expect a 2 week stay. She was speaking with our surgeon this week and going to submit the paper work. We are looking at a late summer, early fall surgery. That gives us time to have a nice summer and avoid cold and flu season!
This is part of this journey that we always knew would happen, but it does not make it any easier. Xavier is a little man, with a personality and a future that I think about often. He is my best friend and just the thought of him being in pain or scared rocks me to my core. SO until we the day comes that I have to hand him over to a gaggle of anesthesiologists we are going to make the most of every second!
We have spent the last few beautiful days outside, walking, painting, blowing bubbles and eating snacks. I know that I can't get away from that WHAT IF thinking...But I will not allow it to get in the way of being in the moment with Xavier. I will not allow it to take away all the fun that we are planning for this summer. I know that God has a plan for Xavier...and I have faith that plan is a long one! Thank you all for your kind thoughts, well wishes and your continued prayers. We are not walking this path alone, we have a lot of heart friends who will be fontaning with us this spring/summer/fall. Please remember them in your prayers as well!!!
Walking in the park
Xavier's healing helper, Eli the elephant!
Xavier and Nana!
Having a picnic in our front yard!
My silly boy!
Heart Breaker!
Painting a masterpiece!
Working on walking with our PT
He is getting so close to walking on his own!
