The last five days since our last note have been some of the most intense days of your short life, and some of the most intense of your mommy and daddy's slightly longer lives. But where do we start with this little tale? Do we start on Saturday when things got really bad for the first time? Or do we start on Thursday when your uncontrollable heart rate kept us from moving to the TCC? Do we start a week or two ago when we start talking about the TCC and you clearly decided that you weren't ready for all that? Since I have only so much patience for recounting the bad times I will start where your mommy left off on Saturday.
Saturday was a LONG day. Your heart rate was up and you were mostly inconsolable the entire day. We spent periods of time thinking maybe it had passed and we were on the upswing but just as soon as your mommy or I would walk away from you and try to sit down and rest we would look up to see your monitors flashing and your hands flailing. After mommy wrote her note to you we finally decided we better try to get some sleep because it seemed like there was going to be no slowing you down when you woke back up. That was the latest we had been at the hospital in a long time.
Sunday morning I got up and came over here early to spend some time with you and let mommy rest a little bit. She does so much by being here every morning with you that I like to make sure she gets a morning or two when she can relax and stay in bed a little longer or even just take time drying her hair without having to rush over here to check on you. During our morning Dr. Marino came in and wanted to talk about some of the plans for you based on what had happened during the day Saturday and over night Saturday night. Turns out you weren't much better for your nurse Saturday night than you were for us Saturday during the day. Not only were we there late but we probably talked to your night nurse three or four times in the middle of the night too. At the end of the night she finally had to give you a dose of your serious sleepy medicine.
That stuff has always knocked you out cold. But on Sunday you had other plans. You did nap for a little while and you did calm down a bit but your heart rate, even in a dead sleep, wouldn't drop below 140 or 150. You normally pitter patter around 90 when you are sleeping by the way. So the day started with Dr. Marino and I talking about some of the things that could be going on to get you so worked up. We went through system after system, trying to figure out something that would not only agitate you but keep your heart rate up so high even when you slept. He ordered a lot of tests, he looked into everything he could. We found nothing. The day continued and as it did your heart rate continued to rise.
Your grandma came to visit for a while and you weren't completely upset while she was here so that little stint of time was nice. Shortly after Grandma left you decided it was time to get some attention. For the first time I can remember your mommy and I almost lost our tempers and started screaming for doctors. You were so upset and your heart rate wouldn't stop climbing. We tried and tried to do everything we could to get it down but nothing worked. No amount of medicine and no amount of soothing had even the slightest impact on you. Finally, after over an hour of your heart rate fluctuating between 180 and 200+, we saw Dr. Morales in the hall and waved him in. He looked you up and down and ordered some tests himself but unfortunately couldn't do anything to make things better.
It wasn't until a few minutes later that the fellow on duty for the night finally made it in your room to see you. At that point you were bright red and moving every part of your body in a different direction like a dog shaking after a bath. Your heart rate touched 210 a couple times and she finally ordered the serious medicine again. This time with an extra shot of some sedation to tide you over until the heavy stuff kicked in. After an hour you were finally calm. The plan for the remainder of the evening was to give you the heavy stuff every four hours in an attempt to get your heart rate down and keep it down over night. The good news is that it did keep you calm over night.
The bad news is that the heavy medicine you were receiving is not very good for you and should not be given for long periods of time. The next problem was going to be to determine how to keep you from going through the same cycle over and over again. Dr. Ilias is up to bat this week so it was his turn Monday morning to take a swing at the curve ball that struck out Dr. Marino over the weekend. Dr. Ilias started the day by talking to mommy and I and explaining his plan for the week in detail to make sure we were in agreement with it before he told his team how they were going to proceed. We agreed with everything he said and put our trust in him to do what he thought was best.
He has started you on new medicine, then took it away, then started you on another one, then upped that one, and now he is backing another one down that you have been on for a while. We got a few extra pictures of your heart and your stomach and your chest and all kinds of stuff to check on those. We had doctors from all over the hospital come to see you and one by one they told us they couldn't find anything that would cause your agitation. It wasn't that mommy and I wanted the doctors to find something wrong but we wanted so badly to be able to start helping you with whatever it was that was driving you nuts. But the search has been fruitless so far.
You have had a better day today, one that I would call a good day (relative to the past week for sure). We aren't quite sure yet what it is that has helped you so much the last twenty-four hours but we are hoping that whatever it is keeps on helping. Last week we wanted to know the answer to this riddle, this week we just want the game to end whether we know the answer or not. As long as you can get back to being healthy and happy and moving forward we will be fine with not knowing what happened last week.
So here at the end of our note we have to ask ourselves again, "where do we start?". Not what part of the story do we tell first but how far back have we come in the last week and where do we start when it comes to trying to make progress again. We have lost a lot of ground in the last four or five days, many many steps backward, but hopefully sometime this week we can figure out either what has been going on or, if we can't figure that out, how to get past this and make progress in spite of it. I don't like to make things sound gloomy but these last several days have been some very very dark ones and a little light, no matter its source, would go a long way right now. So keep fighting buddy, keep up the good work, and we will keep doing everything we can to help you.
Mommy and I love you Connor.
- Daddy
P.S. it has been brought to my attention that I have not been very good about posting pictures lately and your fans are requesting that this trend change. so here you go.
In case the nurses forget who you are...
Mommy needed you in red this week...
"This is what I think of your pictures..."
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