busy girl, I hope all is going well.

is Kevin home yet?

Love to you all. {{{ }}}

I know I've fallen off the face of the internet world...

Big Big NEWS!!! Kevin stood up for the first time yesterday in about 3 months, with the help of the standing frame. He's got new glasses, and was amazed at how much clearer the world is! He's being moved down into the acute rehabilitation wing today, and when I know the room number, I'll pass it along.

Huge steps forward toward coming home! I'm beginning to think there actually IS a light at the end of the tunnel, instead of just hoping there is.

He's eating mostly full meals again now too.

Other than that, my days are filled with nursing, and children. Teagan is getting SO big. I forget how fast they grow at this age.
Life is good.
Hugs and Love,
Amanda

That's wonderful news Amanda !!!!! Thanks for the update. Enjoy your lovely family and have a happy 4th of July!

Amanda

That's so great to hear that life has been treating you good. Keep your sights on that light up ahead and before you know it, that tunnel will be behind you. The prayers continue for you and yours.

Quickly, since I only have a moment. Kevin was moved down into ICU again today, due to having a heart rate of 170 this morning around 8:30 AM and vomiting. They did a CT, and found the beginnings of blood clots in his lungs. He's on a medication for heart rate, which was back down to the 130's this afternoon, and was steady instead of erratic. And also back on the blood thinners.

Drs. Christensen (cardiologist), Prow, and Spencer (neurologist) say they believe that this a small bump in the road. Also that he will only be in the ICU for a day or so, so they can make sure that he's stable and then it will be back up to the rehab wing.

It's like one step forward and three backwards...

Hugs,
Amanda

{{{ }}}

Oh Amanda,

How is Kevin doing today? Is he out of ICU and back in the rehab wing yet? The prayers and healing light continue.

Do you remember that Beatles song you posted over in that other thread a few month ago called "Here Comes the Sun"? I heard it on the radio this afternoon and thought of you & Kevin. I was hoping that was a good sign that he's back to taking forward steps again from here on out. Please keep us posted.

Yesterday Kevin ate all his lunch, gladly! He wanted to get up into the chair, but wasn't able to because his blood pressure was too low. When I asked him how he was feeling emotionally, he said 'I feel happy. And I love you, and Teagan, and Morgen, and Bowie, and Ewen.' He dug into his dinner like a starving man. Granted he didn't eat all of it, but I haven't seen him this 'get up and go' for quite some time.

Today he sat up in the chair for an hour and a half. He may get moved back up to 5th floor today.

You just can never tell about this situation...Labyrinthine indeed.

Yay Kevin!

Love to you all,
Amanda

*sigh of relief*

thanks for sharing that, Amanda.
Day by day, huh?
The rollercoaster can't be easy.
I'm sitting here, imagining
all of the things going on inside you
these days,
on the deepest levels.
All the questions, the revelations,
the humility,
the yearnings, the understandings
the relearnings.


Love and warmest regards of Hope
to You and Yours.

{{{ }}}

Love, Lisa

Today I learned that Kevin has a life threatening issue. It is his heart rate. They can't slow it down, and he's on 5 different cardiac medications. If they try any other more invasive drugs, he may end up having a heart attack. His cancer is under control, however, Dr. Prow is postponing chemo round 5 because at this point in time, she feels it would do more harm than good. She told me we have a 1-2 week period here where we can wait to give it. He is currently Do Not Resuscitate. If he goes into tachychardia, and they shock him, he might end up on a ventilator, and not get back off, leaving him mechanically sustained for livnig. Because of his heart rate, and the unability to control it. So what we are looking at here is that his heart might continue to be just fine beating at a higher level, or it might decide it's tired. Who the fuck knows anymore.

Amanda

Ahh Amanda,

I am so sorry to hear about this. Increasing the prayers for Kevin... that his heart rate will return to normal soon.

Well. Yesterday his heartrate was down to the 120's. He ate good yesterday evening. I spoke with Dr. Prow this morning, and she told me if everything stays stable, then he'll be getting chemo on Monday.

I'll tell you what, this constant up and down is exhausting.

So I guess that brings us back to doing 'alright'

When are we going to get a break, that is what I really want to know...

Hugs to you all,
Amanda

Hanging in there with you! I know things are still really rough, but Kevin is still with you, and he is making progress, and Tegan was born safely, and your other kids are healthy, yes? All in all, things are better now than they had been before. I know you're tired and it probably feels like there's only so long a person can hang on through all this stress without collapsing yourself. But it sounds like, little by little, things really are getting better and better. Can one of your church friends babysit for a couple of days so you can get away on your own and relax?

Love,
Maria

I found this quote...

The fact is, that to do anything in the world worth doing, we must not stand back shivering and thinking of the cold and danger, but jump in and scramble through as well as we can. ~ Robert Cushing

Quite! There are still obstacles, though they aren't insurmountable. When we were having our conversation about the DNR, I asked him what he wanted, and he looked at me and said: 'I want to get better, and get the hell out of here!'

Kevin's still in there, we just need to pull him on out.


love n Hugs,
Amanda

I made it to the UU on Sunday on time! You know what is very curious, is that I can manage to make it on time with a 3 mo. old infant, who can't do anything on her own, but not with 3 other children who CAN do things on their own. It was so nice to be there again. Just like coming home for Christmas break or something. I didn't get to talk to as many people as I'd have liked, but just seeing the loving faces made me feel warm and comforted inside. You are all so great, and I hope you each know it!

Today has been somewhat of a strange day emotionally for me. When we arrived at 8 AM for the weekly meeting, Kevin was in tears, because he'd almost fallen out of bed. The nurses' aids forgot to call for extra help, as Kevin was having a hard time getting his footing, and they needed extra hands to get him up to the side of the bed. But he didn't fall, and so all is well that ends well. It was just scary for him, because he doens't have the leg control to be able to help, or support himself quite yet.

At the meeting Dr. Prow said that from a medical standpoint, in 8 weeks she would like to see him go home, because he'll be all done with the chemotherapy. From a physical therapy standpoint, there's no way he'll be ready in 8 weeks, since 2 of those will be filled with low blood counts. And the case worker said that the insurance company is again edgy, wanting him to be moved to skilled care, and rehab. Well, we really don't need him in the ICU again! Everytime they want him, and get him moved to skilled care from acute, within the week he's ended up in the ICU with SOMETHING. I kid you all not. There's also the fact that the staff does a great deal for Kevin, and when he does come home, guess who that will fall to? Yup. Me. I would much rather see him go to the rehab wing for a couple weeks, so he has a chance to really get solid on his PT. As much as I want him home, I'm also kinda scared and nervous of what will happen when he does get here. And also there will be needs for homenurse staff, etc. Of course all this is going to be dictated by what the Insurance Company decides to pay for. He has a million dollar lifetime cap, though since in mid-May, we were at around $345,000, I have no idea what we're at now.

WHich brings me around to the fact that this whole 'health care' issue has always been important to me, but really now has hit home hard. For those strict constitutionalists out there, I would point out that nowhere in the Constitution, does it say that CONGRESS is entitled to free and fabulous insured health care at the expense of the American People! YOu want insured health care? Pay for it yourself dammit! Either that, or everyone should be entitled to the same insured health care that YOU have access to. I'm sure the choir is singing along with me here. The ER doesn't count as health care access! GRR.

Kevin had an X-ray today to see if they can get rid of the dead skin on his back wound, since the cream they were using isn't getting rid of it. It's a pressure wound in the area of the original lymphoma spot.

Dr. Prow also told us today, that Kevin will never be the same again physically as he was before. He's got osteoporosis, and he should be able to, at some point in the future, walk with assistance, ie cane or walker. She did say it's possible that he could walk unassisted at some point, though that she doesn't know for sure.

I will never, ever again take health for granted. You just don't appreciate it, or think about it much until it's not there anymore. Things will never be the same again, yet he's still alive, and there are worse things in life than having to use a cane. Such as, having bombs dropping outside your back door, or violent civil wars going on in your state, or being invaded by a large country...or being dead, or being told you only have a few weeks left in your life. I've seen several people in the past week who've found that out about their spouse, and that the Drs. can no longer do anything for that spouse other than keep them pain free. We just have to be grateful for what we DO have.

Appreciate every moment of your lives, my friends. Even those things that drive you mad, or crazy, or get under your skin, cause you never know when your turn on the slide will be done. Those things let you know you're still alive and here - now.

Ok so I am going to quit here for tonight.

Love yourself, and let other people know they are loved too.
Hugs and Kisses,
Amanda

Thank you for your words of wisdom, Amanda. Prayers and light continue for Kevin and the rest of your family. Blessed be.