Now that I am trying to get back to writing more consistently, I wanted to pause from the politics of the last few days and give an update on the ups and downs going on with my family right now. I wrote a few months back about the condition my son was born with and the complications he faced and will continue to face.
We were grateful that at the beginning of the year, we were finally able to bring Aaron home. It was great having him home from the hospital and not having to visit the ICU every night. There were still going to be lots of doctor visits, as going home after the first surgery is a very risky proposition. About 50% of the babies in this situation need to go back in before their next procedure. Things were going well, and the doctor visits were going great. They were about to switch from weekly visits to every 2 weeks. Then things changed. Aaron had some blood in his stool and so we had to take him back into the hospital.
We thought it would be for a few days, but we were wrong. They thought it could be a flesh-eating bacteria or something as simple as pushing to hard to poop. With his condition, they have to start at worst case scenario and work their way down. Good news was that it was not a flesh-eating bacteria. Things progressed from there, to where we thought we could bring him home soon. But he started having issues with his lungs and breathing which is a sign that it was time for his second surgery.
It was a little sooner than they would like, but his symptoms were worsening and it was time. Heart surgery is always tough no matter if you have gone through it before. The surgery went well, but Aaron developed some complications after the surgery, where a little over a week later they needed to do another surgery on the same area. Things were pretty bleak after that. He had to be on an ecmo machine that did the work of his heart and lungs, and he was heavily sedated and on a paralytic drug for a while. They knew they needed to do that follow-up operation, because when they tried to close his chest a few days after the heart surgery, he almost died. The next few days were rough, but we were glad he was able to get off of that machine. He started to make some progress after that, but still needed to be on the vent for support. The length of time he was going to be on there was getting long and that can cause issues, especially if you already have weak lungs like Aaron does.
A few weeks ago, we were called into the hospital with some grim news. Aaron’s lungs were failing and his was about 24 hours from no longer being with us. It was important for him to turn around on his own without support, because they docs had done all they could. It was at this point that I finally broke down. The thought of him being that closed to death hit me pretty hard. Aaron fought hard and pulled through and really began making progress.
Not to long after that, he was able to come off of the vent and breathe on his own. He did this for 2 weeks, and did well. His heart rate was high during that time and I thought he was working to hard to breathe. He was stable and the docs thought the high heart rate was tied to the fevers he was having and maybe the result of the infection. The end result was two weeks after coming off the vent, Aaron almost died again as his heart rate plummeted to the dangerously low levels.
What happened is that he had been working too hard to breathe over those 2 weeks, and he finally got tired and stopped. The docs indicated in all their years they had never seen that happen. Usually, if a baby needed the vent they would have their episode a few days later. He went 2 weeks and seemed stable.
That brings us where we are today. Aaron needs a tracheotomy to help relieve some of the pressure from his lungs and enable him to come home. It will be challenging as he won’t be able to make any sounds and will be breathing through a tube in his neck. We will need lots of home health nurses, but the important thing is that he will be able to come back home.
My lil man will be 6 months old next week, and has been in the hospital all but 3 weeks of his life and is about to have his 6th different operation. He is a fighter and keeps fighting. My family is thankful for all the support, thoughts, and prayers we have gotten from all our friends and family.