5/30/2016 - From the ICU Bed

Here is the update from today!  Sorry for typos and whatnot, but we are working from an iPhone:

Hi!  So yesterday after the transplant, I didn't update bc it was just kind of shocking.

He had a central line in his neck with 4 ports going in and one in his groin. He has 2 drainage tubes for blood out of his stomach. A ventilator. His arms were restrained down to the bed so he wouldn't move and try to pull out the ventilator. A tube from his stomach to drain blood and stomach secretions. And multiple IVs in his arms. He was extremely swollen, and the meds that they have to "sedate" him, actually put him in a medically induced coma. He wasn't responsive at all.  Pale grayish in color. He had blood around his nostrils, which indicated that he had a nose bleed on the table.

They did an ultrasound to take a look at the new gear (liver)... And in his unresponsive state, his entire face crumpled up and he started moving his legs, indicating a ton of pain. It was pretty disturbing to see. And I made him stop and give him more pain meds.

I honestly didn't know how to feel because it was so shocking.

Anyway, today is a new day. This morning, he passed his spontaneous breathing test (amazing!). So they were able to take him off the ventilator, and he was responsive!  His first notes he wrote were saying that the ventilator was annoying. :). He has been in and out, but his color is getting better. He feels super heavy, and swollen, and his arms are heavy and he isn't in control which frustrates him. They also gave him a morphine button.... Which we keep have to remind him to push, bc he is so stubborn ;)

He also told me that he needs to pee... And I smiled and told him he has a catheter and a bag so he was covered.

He told me that mentally he was all there (uhhh... I say somewhat only!) but his body isn't catching up.

Now they are about to take the central lines out of his neck and groin. And when they do, he will start to breathe into this spirometer, so that he won't get pneumonia. And the arm restraints are gone.

His new liver is responding well!  His function numbers are good and going down (a great sign that it is working!).

We also got the end of the bed taken off, bc he is so tall. Hahah.

It has been a crazy crazy ride. And fortunately, I was able to get home last night to help
Put the twins to bed. I'm exhausted, but it is worth it. But, we are getting through it. It is amazing to see him responding and talking to us. It is getting Better every hour.

I was finally able to breathe this morning when I saw him, because he gave me a sign. When we first started dating, before we told each other that we loved each other, I used to squeeze his hand 3 times... It was my way of telling him "I love you" and he would squeeze back.

I told him later what the 3 squeezes meant.  And ever since then, he would always respond with 4 squeezes for "I love you too."

This morning, when i thought he was asleep, I gave his hand 3 squeezes... And he squeezed back 4 times. And it was then that I realized that i finally exhaled... And that it will be okay. And we will be fine