Whew. Yesterday marked one month since we first held sarahjoy in our arms. And what a month we have had.
Let me first explain that there is no internet access at the hospital so that is why things on the blog have been quiet. I finally realized I could type something up and eric could send it when he goes home at night. I know, I am a little slow. I am going to blame it on the drugs. Not that I have had any. But sarahjoy has had enough for a Chinese army so I am claiming those. I can text in Facebook updates so if you are on Facebook, you can always look there.
There is so much that has gone on. And I know that most of you don’t want to know every last detail so here is the simple version…
the surgery went well. The hole in her heart was fixed (it was approximately 14 mm which is quite substantial given the size of her heart) and she should be a healthy little two year old within the next few months. Her heart was twice the size as it should have been, which makes me even more thankful that God gave her to us at just the right time. She is our little miracle. We are navigating the road of recovery in the PICU and will remain there for the next week or two.
As for the ins and outs of the last few days, it has not been easy. I have to constantly remind myself that this is a long road. It is full of potential complications, and it is a road that is traveled very differently by different kids. There are lots and lots of variables and many questions just can’t be answered; only time will tell. Just to give you an idea, when she came out of surgery she had a chest tube that went six inches into her torso to drain fluid. She had an iv in her neck. She had a catheter. in her left hand she had a regular iv and an arterial line (going in to the artery as opposed to a vein.) in her right hand she had another iv along with a blood pressure cuff on her arm and an oxygen sensor on her finger. And on her chest she had 5 patches with wire that read her heart rhythms. That’s a whole lot of stuff that is being monitored and a whole lot of stuff that can cause problems.
Essentially they have continued to keep her sedated because she becomes very agitated when she is even mildly aware of her surroundings. The goal is to give her time to heal and then be able to take out some of the stuff that is poked in her and get her more comfortable. So she has not been truly awake at all. occasionally she has opened her eyes and when the sedative is wearing off she begins to moan. But other than that, she is asleep. Which one would think would make for a calm situation. However, there is a reason why sarahjoy is now known as ‘gator’ to the medical staff. She is crazy. She thrashes her arms and legs and tries to flip onto her stomach and get up on her knees. And she is not slow about it. In less than a second she goes from perfectly calm to all of a sudden thrashing around doing her alligator roll. So we have spent hours and hours having to hold her down. There are restraints that could be used, but given her unknown history no one wants to use those.
And if she ever picks up a recreational drug habit, we are in trouble. she can tolerate them like nobody’s business. Every time a new nurse or doctor hears what they have given her they jump out of their skin. She is on so much medication to try and keep her sedated; her little body just does not respond to normal doses. So it has been quite the talk of the PICU as to what to do with the Chinese gator. When the cardiologist came in this morning he had heard about her antics. He was completely floored how much sedation she was needing and as we were talking about that by her bedside she went in to alligator mode and flipped herself over as he sat there wide-eyed and remarked, “I had heard about her but WOW! I have never seen anything like that before! That is unbelieveable.”
I knew sarahjoy was going to make her mark in the world.
Yesterday was a rough day. Not only was she extremely agitated but because of that a lot of her numbers were not great. She was having to really struggle to breathe, her heart rate was higher than they would like and she simply did not look or sound great. And then she gave me the scare of my life.
We had just wrestled with her to give her some more medication and all of a sudden she became completely motionless. Her chest stopped going up and down and she was not responding to anything. The nurse began shaking her leg saying, ‘come on sarahjoy, come on. Breathe baby, breathe!’ and after a few seconds of nothing all of sudden I was in a movie. she rushed to the other side of the bed, grabbed the green bag and started manually inflating sarahjoy’s lungs. The nurse yelled for respiratory and the doctor to come and within seconds there were 6 people around the bed, sarahjoy was flat and motionless and everyone was doing something to her. I sat in the corner of the room and stared. I could not believe what was happening. For what seemed like an eternity she was still not responding. I was absolutely positive I was watching a horrible ending to my love story.
But I wasn’t. God has another ending that hopefully is a long, long way away.
Thanks for all of your prayers. I realize I am ending this a bit abruptly but eric is going home to sleep (and post) so I got to finish up!
I’ll post more tomorrow.