Exhausted doesn't even begin to describe how I'm feeling. At this point I left exhaustion weeks ago and have entered a half awake, half zombie trance. At the end of the day I look back and often wonder how I got from one point to another. I fall asleep as soon as my head hits the pillow and don't remember waking up throughout the night to pump. And when I do wake up in the morning, I feel like I didn't sleep at all.
The girl's colds decided we didn't have enough going on and had to turn into hand foot mouth. The symptoms popped up after we had gotten them back from my parents.
We decided to go home for the weekend so everyone could sleep in their own beds and we could get a few things done around the house. Our plan was to use this as a test run for coming back home permanently. We were going to spend half the day at home, and then spend the afternoon at the hospital. Since we are anticipating months for Aiden's hospital stay, realistically this will eventually have to happen.
But the girls woke up covered in red bumps and were miserable. We spent the entire morning sitting at instacare. While we sat and waited for hours, the realization we were now in contact with hand foot mouth and couldn't go see Aiden set in.
And he was struggling as well. We haven't been able to get him to come back up after his withdrawals from Precedex. They've had to increase all of his ventilator settings to the point of needing the most support since his birth. He's been having frequent desats and brady episodes and purple crying to the point of them needing to give him manual breaths.
They tried testing him again for an infection. They took blood cultures and respiratory cultures and started him on antibiotics just case. They found his red blood cell count was low again from taking so much blood for tests and gave him his 4th blood transfusion. They took xrays all in an attempt to figure out what was going on with him and why he's plummeted so far.
And all the while this was happening, I was over an hour away from him and taking care of some very sick and miserable girls. It's torture being torn in two like this. There's no other way to describe it.
We called his nurse every few hours day and night to get an update. I felt helpless and on the verge of an anxiety attack the entire weekend.
Thank heavens one of his primary nurses that knows him really well had him today. She noticed the ventilator tube going down his throat was slightly out of place and twisted in his throat. Since he's been awake more and moving around, this isn't an out of the ordinary occurrence. As soon as she noticed this she repositioned his tube and he immediately calmed down and became stable.
We were able to see him for just an hour and a half this afternoon, and he is completely exhausted. Any reserve he had was taken up this weekend, and I have a feeling it's going to take him awhile to come back up again. It's like we've gone 10 steps back once more and makes his hospital stay seem that much longer.
This weekend has also brought up a whole new set of anxieties and worries for me. The girls loved going home and being around all of their things. A part of me found comfort in being there as well. But a bigger part of me doesn't know how we are going to do this long term. We need to get the girls back home so they can have something normal. But realistically that would mean I'd only get to see Aiden for around 2 hours (or less) a day as well. By the time I could get the girls to a babysitter and out to the hospital in the afternoon, I'd almost have to turn around and come back. And when Melodie starts kindergarten - what then? That presents a whole different situation that makes me sick to my stomach just thinking about it.
I'm so exhausted I can't rationally come to a conclusion and make a plan that would work for all of us. I'm at a total loss and don't know how we are going to get through this.
Here's to hoping I get some decent sleep so my brain can function and figure all of this out.
(Blood transfusions make him roasty-toasty pink, nice and plump, and super yummy to munch on!)