Sitting at a desk and facing a window overlooking tower after tower of medical facilities and hospitals that make up "hospital row" in Houston, I can't help but get lost in thought about the people behind the windows of the giant buildings I am facing. Its a beautiful sight in a sense, especially at this time when the Texas Children's, MD Anderson, Methodist, St. Lukes, and several other signs are lit brightly for everyone to see in the dark of night. There is so much knowledge and potential under the roofs of this incredible skyline.
I sit in front of this window, blankly staring at the enormous sight ahead, trying so desperately to wrap my thoughts around the events of the day. It was day met with an incredibly wide range of emotions but ended with more laughter than I have experienced in ages. That is always a great way to end a tough day...by laughing until your stomach hurts. We had a couple of good friends come spend most of the afternoon and evening with us, and I honestly thought they would have been thrown out of the hospital because they were laughing so loudly. One of them was Nate's new "Texas girlfriend". I knew the little guy was back to himself when as she was leaving, he told her that he had "one more question"...and then proceeded to quite innocently ask why her boobies were so big. And that he wanted to take a nap on them. It sure was an entertaining way to end a somewhat stressful day.
We started the day off super early, and everything went along quite nicely. The local Medtronic rep arrived at the hospital in time to turn off Nate's stimulator for the surgery, and the little guy was given a dose of versed that made him quite hilarious. He was whisked away to the cath lab, and I went to the waiting room and anticipated the updates they would give me periodically.
There is something so lonely about waiting for your child when their health is in the hands of someone else. I hate that feeling each and every time Nate is in an operating room. It literally feels like my heart is trying to run away to scoop him back up so I can just hold him. I can run errands and leave him with others for hours on end and not miss him, but when he is in the OR, I miss him so badly that it literally hurts.
After a couple of hours, Nate's cardiologist came to talk to me about the procedure. Via catheritization of his femoral arteries on each side of his groin, he was able to locate and test the hole in Nathan's heart. He injected a bubble solution to determine in there was excessive shunting happening through the hole, and the results were negative. He tried 3 different methods of this type of testing, and all were negative, so it was declared that Nate's ASD was not in need of closure and was not causing any negative symptoms in his body.
That was great news, in and of itself. The structure of his heart is sound, and that is now such a relief to us after this extensive testing. However, our hope was that the hole was the answer to why he struggles when he is off oxygen supplementation for a prolonged time. Our hope was that an easy fix...a patch on that hole...would help the little guy come off O2 supp all together. We knew it was a long shot, but it was so hard to not get our hopes up. To hear the cardiologist say that he really believes Nate's respiratory issues are central and autonomic in nature was quite disheartening.
The news made me sad, worried, and confused. It didn't help that the exhaustion of the past few late nights had set in and "something" was keeping the nurses from letting me go back to see Nate in recovery...I spent the next hour and a half in the waiting room, trying so desperately to keep the tears from leaking out the corners of my eyes and swallow the lump that kept popping up in my throat.
The prolonged waiting was due to the fact that the little guy had a fever when he reached the PACU. The nurse was trying desperately to pull his temp down by packing wet, cold washcloths all over him. After an hour and a half, his temp was finally under 100, so they called me back then. He does strange things with anesthesia...his body truly responds differently every single time in some kind of negative way. It took him several hours to really wake up due to a hefty dose of precedex they gave him to keep him asleep for longer. It was imperative that he lay still for several hours so that there were no complications with the catheter sites in his groin. It doesn't matter what you give him, he never moves all that much for several hours after anesthesia. It just takes a toll on his body.
We came up to a room mid afternoon where he continued to look quite puny. We tried to start feeds at 10mls/hr but had to turn them off a few minutes later as he was crying and complaining that his belly hurt really badly. As an oversight, they did not have him on IV fluids, and he was looking more and more puny. Once fluids were started and IV zofran was given, the little guy perked up quite nicely. We started feeds again later and are sitting at 20mls/hr now. He even ate a few fries and a good amount of dry cereal tonight. The effects of the stimulator usually lasts for 2-3 days even after it has been turned off, so his symptoms shouldn't get worst between now and tomorrow when the Medtronic rep comes to turn it back on. Things are slow, but steadily improving.
Hopefully we will be out of here tomorrow morning. We have a couple of appointments on Friday before we head back home to Florida. I am anxious to meet with a new pulmonologist who sees several of the mito kids out here and get her take on everything. I would really love to know if Nate can safely spend several hours a day off O2 without it being detrimental to his health. It would be so incredible if he could accomplish that. He never complains, and it doesn't seem to limit him nearly as much as you would think, but we would love for him to not have to be tethered to it so much. Since he is doing so well in so many other areas, I would hope that he could spend some significant time off O2 without detrimental effects to his body. But unfortunately, we still see negative reactions to even short amounts of time off on some days. I am anxious to get her opinion and suggestion.
Nate has been amazing through all of this...simply amazing. I feel extremely privileged to witness his bravery and strength through every aspect of his life. Seeing how he deals with these tough times with such grace and contentment is simply awe inspiring. God has blessed me exponentially with the gift of being his mother and walking alongside him through this life.
Many pics will come when we return home.