Saturday, June 20, 2009

Day 385 - Jun 20, 2009

I am pretty much at the end of my rope. I just can't get Kevin to really eat enough to survive on. Today I told him if he wanted to die I wasn't going to sit around and watch it and I left. He called me within 5 minutes crying and told me he would eat, but he still really hasn't. I did tell him tonight that if the feeding tube goes back in I am going home. We all know I won't, but this is just so damn frustrating. I honestly just don't know what to do. I have tried everything - cheesecake, milkshakes, all of it - everything possible. I can get him to eat a small amount of soup almost every day, but a baby couldn't live on what he's eating, more or less a 6 foot adult.

It's like he has given up and I don't know how to change his mental state.

As for my own mental state - yes, I am probably sliding on the down slope toward depression, but I'm not there yet. I am trying to hold on to the handrails, but if he doesn't change his outlook soon, I can't say what will happen to mine.

I think it's just all the harder because we had come so far and this surgery really wasn't necessary - it was for cosmetic effect only so I am wondering now why we chose to do it. Well, maybe not - he did have to have the neck release so I suppose it was partially necessary, but still...

Damn. Enough Kev - we have come so far in such a short amount of time. Don't give up now...


Anonymous said...

Is it because he just doesn't feel good or has he lost his appetite? Is it because it hurts to eat? Does he let you know what hurts the most or why he isn't eating? Too bad they couldn't put something topical on it to numb it somewhat. Maybe an outside influence could talk to Kevin about eating and why it is important to eat so he can leave. The sooner he eats and gets out of there the faster he will be swimming in his new pool! :) Tell him we are waiting for more pictures of him swimming!
We are praying for all of you!

I know it's rough but please eat something to keep yourself strong and healthy. We enjoy all of the pictures your mom posts and can't wait to see more! It makes us smile when you are smiling! :) Please eat so you can get out of there soon.
Take care,
Kathy in IA

LISA said...

Oh Leslie,

As a heart aches for you. No one can begin to imagine how Kevin must feel to be reacting this way. Have the doctors said this is normal ?

Is it possible to tell him that his July ceremony in East Brady is right around the corner and he has to hurry and "try hard" to do all he can do to get well. You know though, if he doesn't feel well...gosh. I'm not good at the tough love stuff..but you've proven time and time again that it works.

Just tell him he will get to "go home" again. Home to East Brady where he will be received with so much love, compassion and care.

Give it a try and see what happens. Please know we all care. You need a rest, but I know that simply isn't possible. Is there anyone who would even sit with Kevin.. that can be trusted.. so you could even take a walk around the hospital grounds. Maybe they have pretty gardens you could get lost least for a few moments.

Possibly these two operations, being not minor ones, are going to take a while for him to bounce back from. We can only pray and put this all in God's hands.

That's about the best we can do...simply pray and be here for you when you need us in your blog.

God Bless and STAY STRONG. You're doing a fine job.

Jess said...

Stay strong mama!! I have faith that Kevin will turn around. Can't wait to see you three in July, miss and love you!!


Long-time RN said...

What is the medical team doing to address this issue? The most important thing is Kevin gets nutrition to promote healing and stay healthy. If it has to be by feeding tube temporarily, it has to be, and hopefully the tube gets placed correctly.

What is your instinct telling you as to why he won't eat? If it's pain, the staff needs to address this and come up with a plan to ease the pain prior to offering food. Could his stomach be bothering him from stress, pain, and the meds? If he's not taking one now, perhaps he may temporarily need Prilosec or Nexium type stomach acid reducer. Maybe the surgery and being back in this setting has him down in the dumps big time. How difficult this must be for you when Kevin can't communicate fully and you're so very worried.

Going back for the ceremony is just around the corner. Hopefully that will be a motivator for him. I hope and pray the outcome from the neck release procedure is terrific and well worth all you're going through at this time. Hoping and praying a resolution to Kevin's lack of eating is found soon. Hope to read soon that once again he's a bottomless pit. Thoughts and prayers for you as well, Leslie. You're doing an incredible job.

Anonymous said...

Leslie, Here is a love rag honey maybe it will help mop up a little of the hurt. I Love Ya bunches. Pam

Jill Urso said...

Leslie...there is a wonderful article about you and Kevin on the front page of the Sunday edition of the Pittsburgh Tribune Review. Here's the link to read it online If that doesn't work for you, go to the trib website and search on "Kevin". There are many wonderful pictures in the paper that you can't see on the web site. I'm going to show it to Jude and Emily when they come here this afternoon. Let me know if you'd like me to mail it to you.
Jill Urso

Anonymous said...

Leslie..... Nathan had nose surgery about 2 years ago and when they put the breathing tube in they completely managled his throat and that hangy thing in the back. He barely survived on jello for a week. It got so bad we had to take him to another doctor because it had got infected and he could barely swallow. Just a thought.... he may be in more pain than what you realize from something other than the actual surgery. Praying for you guys.
Jessica Juart Bish

Anonymous said...


The only thing I can add to the comments here is that he had the surgery for a good reason: Kevin's confidence in his physical self as he goes further on the road to recovery. Kevin will look better and that will make him feel better in the long run. Not now, but later. Please don't second guess this surgery - I really support your decision for Kevin to have it. It is a piece of the bigger picture. Please have faith.


Cathy M

Vicki C said...

Oh Les... sometimes I just dont know the right words, or have advice... just know I'm listening, ..I'm thinking about you, praying for you and keeping you in my heart friend.
You know If you need anything at all... Just call. If I can help.. I will.

kathye said...

The one local newspaper in PA had a article on the front page today about Leslie and Kevin.
Here is the link to it:

Jessica said...

I've been thinking about Kevin and praying for him throughout the day. I don't know what else to say other than to hang in there and keep doing what you're doing. He's proven to be a fighter this past year and in my heart I just don't believe he'll give up. And I know you won't either!

I'll be praying that the doctors will find a way to control his pain and get him to eat some more! Take care. My heart goes out to you both.