So many have so much vested in our youngest man – I thought maybe an update post for this trip would be a good idea.
I had an awesome ambulance ride out with one of my favorite nurses, and a pretty fabulous respiratory tech. We bs’d and laughed a lot. Joey alternated between cat naps and listening to us (this mean that while he was awake he stared at me, seriously makes me blush sometimes)
We got up to the floor, started settling in, and Dr Marx showed up. I almost cried and then we HUGGED. Some of you know how my hugs go, he matched me and KNOWS where I am right now. He is amazing, I wish he lived around the corner from me – Carrie, he does make things better.
Joey then proceeded to flirt with everyone that came across his path – he’s ridiculous. The sweetness that is packed into his little body, oh my lord.
Right now (it’s almost 10pm) I’m waiting for the IV team so that they can draw labs (they practically call in the special forces for this guy) and then we head down to X-ray – then hopefully sleep!
Tomorrow he will have a sedated echo.
I’ll keep adding to this post like I did last time? I post a lot of little stuff on Facebook, but I know we’re not all Facebook friends, or that everyone even uses it.
I am so happy we are here.
9 am: rough night, not a whole lot of sleeping for either of us. We had to wake him up to so labs and get the X-ray, whoops – kinda screwed everyone up.
On another note, his day nurse and I would be total BFFs if we met at the park.
9 pm: a wildly unexpected day that had me in tears. The sedated echo showed amazing growth in Joeys right ventricle, which now means that his right outflow tract needs some additional work. We did see a bit of growth upon discharge, but this, where he is now, is amazing. It is growing strongly and, as a result, there is some increased pressure.
Tomorrow Joey goes under general anesthesia for a heart cath. They will measure pressures and see if they can tinker with that valve – if not they’ll go in surgically next week.
We are where we are supposed to be.
7:30: Joey woke up in an amazing mood, hasn’t eaten since 3 but is still having a blast. He’s pretty incredible.
I’m feeling a bit nervous about the cath, this is a chance to avoid a surgery this trip. What’s fabulous is that I am feeling even more fluent in all of this, and know for a fact that we can all do this with GREAT strength. Just by typing this by nervousness relaxes. Pssh, we got this.
Oh, now I’m sad again!
And that’s a lot of what this is, an experience of life and emotion. I don’t believe in “it could be worse”, because it invalidates your sadness. When I feel like crap, I don’t think of how much worse it could be, I honor the sadness, frustration, anger, whatever that is. I make good friends with it. I feel it, and I am then able to feel the rest – the beauty, the love, the peace.
So today, as we go through the craziness here, I invite you to take a moment to just feel like ass. Breathe that in and see what you can find on the other side.
3 pm: He is in the cath lab.
7 pm: Waiting. Ugh.
8 pm: He’s done, he’s done, he’s done. Oh my goodness, he’s done. They have extubated him, but are still sending him to ICU for recovery.
All of his pressures look good, so that obstruction isn’t causing an issue. The pressures in the rest of his heart are good too. There’s no obvious reason that he’s for these effusions other than its just his body right now. So we hold tight, treat with diuretics and diet…and have no idea how long he needs to ride it out.
We are still in a holding pattern, he’s putting out less fluid, even with the increased diuretics. We move to water seal today, which means the turn off suction on the chest tubes. If we do not see a remarkable change the chest tubes will come out in the next few days.
We’ve been here before, twice actually. Knowing that pressures aren’t playing into this is a huge relief, it means that his heart is not stressed – and is doing a great job. His sats have been holding steady in the low 90s!
15 minutes until both chest tubes come out and cuddling commences…
Chest tubes OUT.
There has been NO more build up of chest fluid, thanks to a regimen of diuretics. A completely different, much less invasive, more effective approach that was taken at our home hosptial.
I posted a video of Joey yesterday on FB, where he wasn’t on o2. He’s been on and off it for the last day or so. Another step in the right direction. He’s lost a lot of weight since August – a goal of the team here is to get him to what I call “lumberjack status”.