Once again there are too many details about Mia’s health to share in one, or even five, Facebook status’s. And so I turn to my blog to share the news.
Where I left off:
Mia was safely moved from Cape Canaveral Hospital to Kindred in Melbourne.
Things were rough when Mia first arrived at Kindred. Cari was in town to oversee the move but had to head back to North Florida the next day and though she was the first of us to see Mia in Kindred, her last visit wasn’t great. The move took a toll on Mia and what little responsiveness had been gained during the last two days in Merritt Island were soon gone.
That’s when I started my 11 day shift at Daddy and Mia’s house.
There are many reasons why we want at least one of us to be near her, but the reason someone has to be in the house morning, noon, and night is simple: Elmo and Cooper, 14yr old dachshunds, brothers from the same litter, who are just as devastated by the change in our household as we are.
And so Mia moved to Kindred, I moved to Merritt Island to take care of the dogs, and Cari and Corey went home.
Improving at Kindred:
My first weekend at the house was super lonely so I ended up hanging out with Mia at Kindred pretty much all day. I did her hair, massaged her, got her iPod a little speaker set and turned up the music that she’s so known for loving.
And slowly she started to get more and more alert. But she was also having a LOT of stomach issues.
This is when I realized how incredibly critical it is for your body to “evacuate.” Her colon shut down and the pressure of a very full stomach (being fed through a feeding tube) was causing her to take shallow breaths due to pressure on her diaphragm as well as for the lower part of her body to get poor circulation. The reason I massaged her so much was because her feet were starting to turn blue on the bottom. Things were looking kinda rough.
Kindred did her right though. They stopped the food through her feeding tube, started IV supplements, and again she started to become more alert.
Monday, March 24th was a good day for her. Maybe even her best day.
Her stomach issues had worked themselves out, her hair looked good, her circulation started again so her feet were nice and warm and pink. She still couldn’t move her hands or legs, but she was pressing down with her shoulders and moving her upper arms. She had her music, and we talked.
I asked her if she was scared. She nodded.
I asked her if she was mad at us for putting her through this. She shook her head no.
I asked if she wanted me to leave. She shook her head no.
I asked if she wanted me to shut up. She didn’t reply.
When she nodded ‘yes’ to being scared, I said “okay I can fix that. I’m going to tell you everything that’s going on with you!” I’d noticed her straining to hear what every nurse and doctor was saying while in her room so I started from the beginning.
The only thing I left out was Daddy. I never, ever mentioned Daddy. And Monday the 24th was a great, GREAT, day.
March 25th – Panic at Kindred:
I practically floated into Kindred the next night after work; I was just SO excited to go see Mia.
But when I got there and she saw me, she started trying to talk to me. I asked her if that’s what she was trying to do and she said yes. Her blood pressure shot up to 188/100, her heartrate hit 100, and her breaths per minute (which the machine had set to 18) were hitting 50. She was breathing so hard that she was pushing air around her trach. I truly believe she was trying to ask me about Daddy, and again I danced around discussing him. The result? She completely panicked.
It was awful.
She was freaking out so badly that they couldn’t get her sedated fast enough. I asked her again if she wanted me to leave and she shook her head ‘no’ but the nurses eventually asked me to do just that.
And so I didn’t see Mia Wednesday or Thursday. I waited until my birthday, Friday 3/28, to go back and that time I went with Vince.
March 28th – Kindred can do no more, and a move to Holmes:
When Vince and I stopped by Kindred on my birthday it was supposed to be a ‘pop-in, pop-out’ visit. We just wanted to say hi and not cause her to panic.
Instead we saw her before she was moved to Holmes Regional because Kindred said she was simply too critical for them. She’d had a bad morning, her blood pressure bottomed out, her cO2 levels hit 74 (a normal level is in the mid-30’s) and she had to be sedated and paralyzed to keep from having intense panic attacks and anxiety.
The day after my birthday, my second full weekend in Merritt Island, I went to Holmes to see her and she was right back to square one.
The ICU at Holmes is *great* – but Mia had no idea I was there. She responded to some sounds, but all the progress we made was gone.
MRI’s, EEG’s, and the call we didn’t want to take:
Mia has a great staff at Holmes and they were just as curious at her inability to move, nod, track with her eyes, or respond with any consistency as we were. And so they scheduled an EEG and MRI.
In the meantime, she went back on her feeding tube and started bleeding in her GI system.
And Thursday Cari and I took a call from the neurologist who combed through her results… and it was the second worst phone call I have taken.
Basically the facts are these:
- There is no clear area of brain damage but there is evidence of diffused brain damage, spread throughout – that is likely due to a lack of adequate oxygenation.
- If her brain were the only issue it’s possible she could recover over a 6 to 8 month period but even then it is unlikely she will ever be able to walk and she will have to re-learn everything.
- But her brain isn’t the only issue. Her lungs are not improving and her GI system is bleeding.
- This means that not only is there a lack of adequate oxygen getting into her blood, but since she’s bleeding out there is a lack of blood getting to her brain.
- She’s on the best antibiotics known to man and she still isn’t showing signs of improvement.
- Her body is simply not supporting her brain any more.
And so today we were told to think about what we wanted to do… and when we’re ready, if we’re ready, we will request we move to Mia into what’s called “Comfort Care.” They will make her comfortable, make sure she’s not in any pain, we can talk to her, be with her, tell her about Daddy and say goodbye for the last time, and let her go.
It might take hours, it might take days. But we can, and likely will, ultimately make the decision to stop putting Mia through this struggle only to bring her into a brain and body that will never be what it was, and only continues to get worse.
Though we expected this, hearing it all was still so… shocking… heavy… intense… horrible.
I can’t speak for Cari and Corey, but as for me:
The only way I’m getting through this right now is by reminding myself that it’s not about the life we will be taking away from Mia, but the suffering and indignity we will be sparing her. She won’t have to communicate with only her eyelids for years on end. She won’t have to eat and breathe through a tube. She won’t be bedridden and get sores or painful infections. She won’t be trapped in a body that’s failing her. She won’t survive, but we won’t be taking away her life.
This whole time I thought my Dad was getting cheated from the grieving he fully deserves because I was so focused on Mia. But now I feel like she’ll be cheated because I am so numb from Daddy.
And that’s that.
Until next week.