This past week, the light was dim and we all cried a lot.
On the way TO the hospital, I think too much, and cry.
Coming home FROM the hospital, I think too much, and cry.
But the moments in between? Mostly happy and togetherness.
We have all taken turns spending the night with Daddy. He has now been spoiled, and although he doesn’t make a fuss when we leave, we can tell he doesn’t want us to go. And his puppy eyes are irresistible, so one or more of us stays.
Today was my turn, and my mom came by to pick up everyone at the hospital so I wouldn’t have to make two trips. She has been invaluable and always wants to help despite her health problems and pain.
The boys spent the night with Daddy Sunday night. They played Xbox, stayed up late, and ate lots of snacks. It was hard for them to leave today.
We all laughed so hard and talked and talked about this and that. We had a movie we were going to watch, but it stayed on pause the whole time.
David has been nauseous all week and the doctor was worried he might have an infection. So they ran tests that did not come back until today. I was so worried it would come back positive. It is one of those viruses that patients who have been here way too long often catch and it’s no minor thing.
But it came back negative today. I can breath now.
I guess that’s why today seemed so happy, once we got here. And I saw him walk with his walker for the first time and I was like, ‘what????’ He is doing so good!
It was good to see a positive. So good...
There are things I will need to get before he goes home. I have been really anxious about that.
But today... it was all falling in place and the overwhelm wasn’t so big. I just want him home as soon as he can get here.
We cannot afford the rehab and I am VERY ok with that. We’ve got this. He has got FOUR able body’s to help and care for him and get him stronger.
We have got this.
He will have to go home with oxygen. And he will most likely have to lean upon that for a good long while.
When he walks with the walker, his oxygen levels stay normal, but when he stops and stands too long he struggles to breath.
When he sits up for a while, he also struggles for air. It’s kinda scary to see.
And as I write these things I start to get afraid about it all. And my ‘We got this!’ turns in to ‘We got this?’
His trach incision is healing well and has half way grown back together and is talking better; almost there.
He is eating well and it’s good to see him have a better appetite. He is on the ‘feeding tube’ at night to supplement his calories. I may have to go home with that, too, as well as the antibiotic that he is taking right now.
So many antibiotics. We have been overdoing it with dairy free yogurt and kombucha to help balance out the anti-stuff. I will certainly be glad to see him off all these meds.
He may be able to take a shower tomorrow and is looking forward to that. I hope it happens. Not showering for THREE months does not do a body good.
And so...another day closer to home.
Shelli
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