Today was the first day in almost two weeks that I rolled out of bed without a huge ball of screams stuck in my chest. I was finally able to sleep until 4am instead of waking up at 2 or 3.
They didn't switch Big Kid to the bi-level vent yesterday. They actually went to the regular vent. And so far, he's tolerating it.
The doctor said that this was a big step in the right direction, and that his x-rays were showing a little more improvement.
Still critical, but a little more than stable. Cautious hope, but hope nonetheless.
Since the paralytic wore off, he's been all over the place trying to get comfortable. He's still sedated, but his body is trying to propel him out of bed and get him the heck out of there. ;-)
I wanted to answer a few questions from some of you who are new to my blog and haven't gotten to know our family before this.
Big Kid was diagnosed with rapid-cycling bi-polar disorder and a severe panic disorder after he had a big mental breakdown away at college when he was 19. It took us quite a while to get him somewhat stable with meds, and last year in the fall we took the advice of his doctors and moved him out of our home and into his own apartment. He was there for about 10 months and then moved in with his girlfriend.
This catastrophe is the result of complications of H1N1. The pneumonia is viral and not bacterial.
Thank you all for your suggestions about music and his Ipod. Right now, the goal is to keep him calm and not fighting the vent. Any outside stimulus (lights, music, loud voices) seem to agitate him. Personally, I wonder if it's because of his ADHD. Although he's receiving all his other regular psychotropic meds intravenously, he's not receiving any stimulant medication for that for obvious reasons. I also worry (with horror) that he's having constant panic attacks as well. A friend with personal experience told us that the liquid form of anti-anxiety meds (clonopin and ativan) affected her differently when she was in the hospital.
I can't begin to tell you how much your support has meant and continues to mean for us. Sitting in that ICU room hour after hour is very isolating. It's a comfort to know that we have many friends outside who are thinking about our boy. Thank you from the bottom of my heart.
I'm still really pissed off at Pa Ingalls, though.
33 comments:
Yeah Pa Ingalls pisses me off too..he's a diletante.
Good news re:Big Kid! Maybe the activity from him is the hyperactivity and not panic attacks. Here's wishing you a virtual casserole (about all I can do from 2000 miles away), and continued improvement from BK. I'm thinking hard and praying hard for all of you.
love!
What a promising post.
I am new to your blog ... don't remember how I landed here, but I did - right when this started.
I don't 'know' you or your family, but I want you to know that you are all in my thoughts every day.
God Speed on your son's recovery.
I was hoping that you would comment on the value of getting the H1N1 vaccine for the Little Kid and for you and hubby. Do you think its too late to do it? or that it would be ineffective?
HI from Brisbane, Australia. I looked in on your blog completely by accident the other day and have had you and your family in my thoughts ever since - maybe fate conspired to get as many good vibes out there for you as possible? I'm really pleased for you that Big Kid seems to be improving and hope that continues at a rapid rate. Your raw honesty and well-kept humour are admirable.
All the best,
Liz
PS. I've always loved Little House, what a shame about Pa!
slowly but surely.
still sending you positive vibes and hoping today brings even more good news.
stay strong.
:-)
great news, thanks for sharing
Hope has always been a vital part of this – so much better when there is something concrete to pin it to. Wonderful to read those words – “...a big step in the right direction.”
(don’t know if I can ever forgive you for pointing out Pa’s flaws...)
Hope is hope. It doesn't matter if it's small, cautious or considered pointless by doctors. Without hope, we're nothing. He's stable and is making little improvements so you have all the reason to be hopeful! He's your son, it's your job to expect the best for and from him.
I think about you and your family all throughout the day. Many prayers for all of you.
I do not know how you have the presence of mind to think of us out here. Big Kids body is fighting to win this battle. He has made a good baby step forward. That's how to beat this isn't it? This is good news.
I hope today is continued progress! Hang in there! Hugs!!
I'm so glad to hear there is some good news about Big Kid! Glad you finally got some sleep, too.
When my daughter was in the hospital, we brought in a white noise machine and played ocean sounds quietly for her. She responded well to it. I don't know if that would help Big Kid, but I thought I'd throw the idea out there.
I have a hard time making the distinction between the real Pa Ingalls and the Michael Landon version. The real Pa may have been a little selfish, but Michael Landon made him seem like the perfect father. When I watched that show as a kid, he was just Laura and Mary's dad. Now when I watch it, I think he was pretty hot compared to the rest of the men in Walnut Grove!
You blog has become my first stop each day. I'm so glad to hear things are starting to look better. Baby steps as you say!
Sounds like Big Kid is beginning to move in the right direction. Baby steps.
Good you're getting more rest too.
As always, prayers still coming.
I remember being angry at Pa Ingalls when I read that too!
Progress and Improvement and Steps in the right direction...all good things. I'm still praying for you!! I will add in prayers for Big Kid on the panic attack front. Lots of peace to all of you!!
Finally, a ray of light at the end of the l-o-n-g tunnel towards recovery. Hopefully Big Kid will continue to improve each day…albeit slowly. Please remember to take care of yourself throughout this ordeal.
(((hugs)))
Happy to read things are slowly but surely turning, and that you're sleeping a little.
I meant to ask you, how is his girlfriend dealing with this and has she been around?
Take care of yourself and sending you all good thoughts. *hugs*
Improving lungs...that's good. I hope soon his entire system is stabilized.
I am so glad to see the good news about BK tolerating the regular vent & that you were able to get a little more sleep. This will help the both of you.
I've been busy and not reading many blogs lately, so this is the first I've read about Big Kid's illness. Wishing him a speedy recovery, and virtual hugs for you and the rest of your family too.
Sending a mountain of prayers and hope and strength. You and your family are doing a great job with all of this. Good to hear you are getting some rest. Hang in there. A little more stable is great-- One step at a time.
Love ya,
xoxoxoxoxoxoxo
Every step forward is good, even baby steps! Hugs & prayers to you and your family.
I, too, have just stumbled across your blog by accident. My heart goes out to you and your family. Keep the faith. Praying Big Kid pulls through.
Texas Mom of 2
Breathing a sigh of relief while continuing my prayers! I had to be away from the internet for an extended period yesterday through today and I want you to know that I thought of your family often! I was so worried (can't imagine the worry you've been going through)until I could jump on and check your blog first thing. So glad that things seem to be headed in the right direction!
Thanks so much for filling me in on Big Kid I really appreciate it as it helps me to understand your blog even better! I am really happy to hear that he is doing better!! Always praying for his health!!!
Amy McD
(changing to we don't get confuzzled :))
I'm so glad you're getting positive reports now. My thoughts and prayers are still with you all.
I think of you all daily and am so glad to hear this news.
Such a relief he is getting better! Pa Ingalls.. lol!
So glad you are getting news that is giving you hope. Sounds like his strength and yours can pull him through to a full recovery.
Still here. Still on my knees.
I could never bring myself to read Laural Ingalls Wilders books but was plonked in front of the telly as a kid and forced fed the TV series. I personally hated Mary Ingalls, goodie, goodie suck and pretty much rooted for Nancy Olsen and her mom. Deep down I knew Pa Ingalls was no good so and so, bet he sucked at fiddle playing too.Geez, Little House on the Prairie venting, now I feel so much better.
Really pleased to hear some good news. One day at a time.
Thank you for sharing about your son since I am new to your blog I did not know this. I have still been praying for him and all of you. I can only imagine how it's been for you as his mother to watch him struggle with mental illness at his age. I can only imagine what it's been like for him. I wish that I could say something, anything, that could help you feel better. But, I know as a mom, that has went through things with my own kids, there really isn't anything anyone can say. Bless you with much peace and for a good nights rest. XXOO Lori
The best thing you can do for your son is to take care of yourself. People of any kind are the best thing when feeling isolated. My husband spent 6 weeks in ICU and another 5 weeks in rehab after a fall that left him with Traumatic Brain injury. I would sit by his bed hold his hand and hum in his ear when he would get agitated. Will keep checking in for good news.
The best thing you can do for your son is to take care of yourself. People of any kind are the best thing when feeling isolated. My husband spent 6 weeks in ICU and another 5 weeks in rehab after a fall that left him with Traumatic Brain injury. I would sit by his bed hold his hand and hum in his ear when he would get agitated. Will keep checking in for good news.
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