I have done it again. Timeless times I have told myself to keep my mouth shut. Just keep your mouth shut, Amanda. It's not that hard.. you wouldn't think. I think I need to start listening to myself a little better.
The very day (THE VERY DAY) I wrote that last post guess what happened. You don't even need to guess. You already know I bet. Yup, Theodore got taken to the hospital. He started with a low grade fever so we started his meds, alternating every three hours because we don't play games with him. What did the fever do? It kept climbing. And he got more and more miserable as the hours went by. By 8pm his fever was 104.4. Just two hours early it had 'only' been 102.8. So we did what every body would do.
We packed his stuff, our clothes, the kids clothes and set off for the hospital. A trip to our local hospital always means a transport to Hopkins so we dropped the kiddos at my parents and got the works started. Not long after getting there we were told that he was going to Hopkins (duh) and they were going to try to get an IV.
You can NEVER get an IV. I know he needs fluids (by this point he hadn't had a wet diaper in many hours) but there are other ways we can do it. Well, they tried anyway. And they failed. Then the doctor comes in and tells me that he's been on the phone with Hopkins and they both fear that he might be septic so it's imperative we get a line. He would try with an ultrasound but if that failed they would have to do an IO. That, my friends, is a needle to the center of your bone.
So he tries with the ultrasound. Twice. And he fails.
Which leads us to an IO. Did I mention that's a needle to the center of your bone????
All this time and all we've been through and he has avoided an IO. Just add it to the books, I guess.
They had called for the helicopter which went up for us but came right back down because of weather. And because the ground transport team from Hopkins couldn't leave right away they had to send a different team. A less ideal team. But to make a long story short, we made it to Hopkins. I won't say unscathed because that would be a bold faced lie, but we made it..... alive. Barely.
As soon as he got to the PICU he was looking pretty rough. They decided to give him a central line (in the opposite leg than the one the central line caused a clot in last time) and get him doped up and on meds.
It all worked quite quickly and within 24 hours he was looking much much better. This week we have been able to wean him off medicines and vent settings. And despite not being able to find an infection *anywhere he has been improving.
He seems to be getting good oxygen and doing well in that respect, but he was getting increasingly aggravated as the day went on until he became absolutely inconsolable. We're talking thrashing from side to side, arching his back, refuting all your efforts, crying, etc... We had just gotten him down to his home vent settings when all hell broke loose.
We left the hospital tonight with vent settings up, a shot of midaz, a shot of fentanyl and the doc in the room pushing some white miracle drug to keep him calm. Also, talk of most likely starting the drug drip again with a secondary drug on top of it. All the work that was done has just been undone and now it seems we are almost worse off than before. Not to mention that although they have already done one ultrasound of both legs because of swelling to be able to rule out clotting, they are redoing it tonight because one leg is going purple on and off and also becoming taut with the swelling.
It has been a long day. A long day on top of a long week. I just want them to keep the boy knocked out so he can get some rest and we can all regroup in the morning. JUST KEEP THE BOY CALM. Thankfully we had a super nurse who was familiar with him and really pushed for us. She was great.
I'm not too sure what tomorrow will hold. Hopefully better things. My heart breaks when I know there is something clearly wrong but we can't figure out what it is. For now I am off to bed. I can barely type.
*All the cultures came back negative for infection but some bloodwork showed clear signs of infection. Go figure. Rambo can never do it easy. However, last night the lab called and said a test came back positive for flu. Which is weird because the other hospitals test said negative and also because viral panels usually come back quickly... so they say... and this was several days later. Who knows....