It’s been an emotionally torturous day.
After getting up and eating breakfast, Amanda simply wanted to go back to sleep. Understandable that one would need sleep after recovering from pneumonia. But she slept, and slept, and slept. We tried to talk to her to wake her and she would open her eyes slightly to look at us. Questions addressed to her were answered with a shake of the head. And she slept more. They took another blood sample in the afternoon to check her CO2 retention. We thought for sure it would be good since she had been sleeping all day and letting the bi-pap on her face help her breathe. The test took a dive and the results were bad – even more CO2 retention. It was about 4pm when I decided to run home quickly to change clothes and take a breather before my turn at staying the night. I drove home sobbing that her condition was worsening and I was afraid we were losing her. She wasn’t improving. She was getting worse. There was nothing more they could do for her. Nine day later and she wasn’t getting any better.
Then I come back at 5pm and she has decided to wake up and get into her wheelchair. Really? She’s hungry and eats dinner. My parents stop by and she is chatting, semi-normal Amanda. The whole time my parents are here I stare at her in confusion. Being tired doesn’t help. The ups and downs are just wearing me down.
Nine days ago we brought her in to the hospital looking very sick. Things went from bad to worse and she ended up being intubated and on a breathing machine. Amanda has always rallied and bounced back after hospitalizations. After getting her tubes out, finishing up her I.V. antibiotics, and getting breathing treatments, her lungs sound clear and look great on x-ray. It’s time now for her to start begging to go home. Blood work still shows a very sick girl and we’ve got all the neurological signs that something is off. Her sleep apnea has worsened, her pupils were dilated this afternoon and not equal, and she keeps swinging from alert to limp. But this evening she talked about going home. It’s been torture, emotionally, to watch Amanda decline so quickly and then suddenly rally and sit up like everything’s normal. It confuses this tired mind. Doesn’t help that I have practically lived at the hospital for nine days, going home only to sleep and take care of minimal housekeeping. There are so many questions taunting us. Will Amanda recover fully? Is this the beginning of the end? Will she have to get a trach? Will she be able to go back to the apartment we just moved her in to? Is she going to be on a ventilator and will we have to move her home with me giving her 24-hour nursing care? If we get moved to Children’s Hospital tomorrow, what are they going to find? Will it require surgery? How long will we have to camp out at Children’s?
So sorry for getting emotional and a little crazed. Just frustrated and tired. Perhaps this will give you an idea of the emotional roller coaster ride we are on as we are faced with so many issues, scenarios, and unanswered questions. Ted and I haven’t been home together for nine days. Although we have been together at the hospital, it is not at all the same as home life. I had to call of work again this week – and I love my new job. No work means no pay check. And then there’s the ache of wanting Amanda to be happy and have the chance to live a full life. We thought we had just gotten her there with her own place. Now what’s going to happen?
And that’s where my mind is right now.
just Laurel
my heart breaks for you….maybe its because so many times i could have written those words without changing a single one…..saying prayers for you all……
I know you understand more than most. Thanks for your prayers. <3
You don’t know me, not the best way to begin this but nonetheless true. I was given your name from a friend, Mike, from cardiac rehab. He told me about you and your book; he thought we should meet. I looked up your book on Google and found your blog. I have been following for a week now and became wrapped up in your story immediately. I too, have a daughter with a chronic disease; Molly was diagnosed with severe clinical depression in 2006 when she was 15. As a result, she has overcome countless obstacles in her short life, numerous drug trials, psychiatrists, psychologists, a 33 day inpatient stint and 50 ECT treatments and still….. I know what it is like to watch a child suffer and standby seemingly helpless. I have been riding on the emotional rollercoaster you refer to, dog tired, exhausted, physically and emotionally spent. God and my faith are what help me through it all. I too, am writing a book, the reason Mike told me about you. I am a wife, mom of 6, grandma of 2, a nurse in the CICU at Oakwood Hospital in Dearborn and I write a bi-monthly Faith column in my parish bulletin. Please know that even though I do not know you or your family, my prayers and thoughts are with you all and right now, a devotion candle burns in St. Cyprian Church in Riverview for Amanda and her recovery. LISA
Lisa! I believe Mike Riley called me about you. He left a mesage on my phone and I meant to get back to him but this whole crisis with my daughter erupted. Sorry. Of course I’d love to talk with you – meet for lunch – whatev – as soon as I can get over this hospitalization with my daughter. You can email me at lrg1959@aol.com instead of messages thru my blog. Thanks for contacting me. Hugs and prayers to you – from one mom to another.
Laurel
Laurel, John and I are praying fervently for you, Ted, your daughters and of course Amanda. I had a lot of bouts with pneumonia when I was little, and a few when I was older and out on my own, and it is such a mysterious thing; feeling better, then getting such a high fever that I was delirious (having conversations with dad & mom that I couldn’t remember, being listless, etc.) within hours of feeling perfectly well-rested. I hope she can kick this if it is God’s will. Praying ~ Sending lots of love-filled thoughts ~ <3