I cry everytime I check these boards, you are all what pull me together when the nightime comes and I am at my weakest.

My Dad is out of ICU . . . sharing a room where he has the tiniest space, only room for one person to even sit. Hopefully they will move him. He was fit to be tied when we got there as they took him for an Xray and they were telling him to do this and that and he can't move his arm because they took bone from his shoulder blade and his other arm is atrophied from birth. They could not understand him because of the trach. The nurse told me Xray people are only trained to do xrays and you can't expect more than that . . .but I found his experience made them sound very cold and I am surprised. . . poor dad. But he was up today for two short walks. I HATE LEAVING HIM, THAT IS THE HARDEST PART EVERYDAY!

Minnie, my dad does look awful, but his eyes, he has beautiful blue eyes, where so clear today . . .that is all I saw, I did not care about the tubes, drains, stitches. But I am worried about my little ones, I don't know how they will feel when they see him. Unfortunately he has a big old patch of new skin where his chin area up to his lip was . . . I am sure once the swelling goes down . . . but it will be weeks before they see him. I will not give him a mirror and he has not asked. How long until the swelling really started to go down? When did your trach come out?

I am praying for all of you . . .thanks for taking care of me this week . . .I hope to do the same for you all some day.

Love,

Laura

Laura

Just know that every day things should get a little better and we hold you in our hearts as you go through this...YOu my friend are NOT alone !


Shar

Laura,

I have sent you and email.

Jerry

DEar Laura, you may not want to hear this, but NOW is the time to think practical and be proactive. Your Dad is going to struggle for awhile yet- so you need to be sharp and observe the things that are giving him the most trouble and start thinking solutions.Get his anticipated release date from the hospital and start asking very pointed questions about what he will need at home in terms ofcare and medical equipment. The swelling will be with him for awhile- the trach is contingent on the swelling and whether he can breathe o.k. on his own. A board to write on is really helpful [but if he is on strong pain meds., he still may not be able to communicate well. In our esperience, our grandkids [age 14 and age 2 yrs.] were able to absorb and accept John's physical appearence easier than we did- we had tried to prepare them for a "different John" before they saw him and they handled it well. Please tell your hubby that he needs to be readiang here also so that he can truly be a part of this experience you and your Dad are going through. It's like " DUH-Read the directions first" People who have not been through this have no clue of the physical and emotional toll this cancer can create. And being a caregiver to a cherished person in your life can really be an emotional rollercoaster. Laura, please stay strong and enlist your husband as a member of the team. Amy in the Ozarks

Hi, everyone. I just trick or treated for two hours with my kids and did not eat one piece of candy. I am so proud of myself . . . stress usually would make me eat lots of it . . . it was good to be out in the beautiful fall night with all the ghosts and goblins!

Dad looked better today as a great deal of swelling in his face and neck went away in 24 hours, BUT HE IS ANGRY!!!!! ANGRY ANGRY ANGRY! He wants out of there in the worst way and he is no where near doing so. He is up and walking two times a day, not far but it has been a big deal. He thinks he should be doing more, he wants to try to get up on his own, go to the bathroom. His good arm and shoulder is swollen and his pain level is a 9. He really can't get up but he threatens to try. Gee, we left him thinking he was going to take a nap, takes three people to get him in bed and 40 minutes later we return and he is back in the chair angry and demanding to walk. HE HAS FIGHT IN HIM AND I WANT THAT. . . but being so impatient is not helping. I will talk to him tomorrow . . .the nurses have been amazing. He is also angry because the inhalation therapist said he was getting a bit confused because maybe he was not getting enough oxygen . .. this happens but I think she could not understand what he was trying to say so he was really fine. He was all upset but I explained to here what he really needed and she apologized and really made him feel better. But when we left he just had this far away look in his eyes so I hope he behaves himself.

How do I help him to accept the fact he is there and to work with everyone? He is bored out of his mind as midday TV stinks. I am going to Target tomorrow and buying him a little DVD player so he can watch movies. They have a VCR at the hospital that was just sitting there . . .but who knows if he got it tonight or not. . . I just am afraid he may hurt himself by trying to get up and his biggest fear came true . . . losing use of his good arm, well for now. . . and he gave the DR. some heck about it but he had to use that shoulder blade to take the bone etc.. It is what had to be done and he feels like an invalid! Slowly but surely he will heal . . . he can at least raise his arm to his trach to talk.

HE has to just suck it up and deal with it . . . he has no choice, he has to do it for himself and for us . . . I guess I am starting to get angry too but at him. Of course he can't leave, making himself and us miserable is not going to help. Tomorrow will be a week since his surgery . . I don't even know what day it is anymore.

And I cannot take the trach sounds, I AM REALLY TRYING BECAUSE I WILL NEED TO HELP WITH THIS BUT IT MAKES ME WANT TO RUN AWAY AND HIDE!! My stepmom says she will be okay but I am afraid she will get so nervous. I have been thinking about this all day and maybe I am obsessing about it too much. He may not even go home with one but I have kids, I have dealt with poop and snot for 8 years but I am beside myself . . .



Love to all,

Laura

Oh Laura,
I feel your pain as so many here do. Are you up now? If so, call me.