Another Vest topic

[JRPandTJP]

We got our vest this afternoon. I always think I am ready when we start a new treatment, but of course I wasn't. I brough it in (damn that this is heavy) and my 6 year old (no CF) was all excited. She is running around saying "Ben your jiggle machine is here your jiggle machine is here!" We set it up and she wants to wear it first so I say go ahead. They laugh their heads off. Then Ben puts it on and sits through the first 5 with no problems. We are singing songs and making our voices go crazy. Then he wants to sit on her lap for the remaining time. Suddenly seeing my older daughter holding my son while he is hooked up to this vest thing, made me almost loose it. I mean we went from laughing and having a great time with it to me having to suck back tears and swallow the lump that had now formed in my throat. Even though he does nebulized GSH every night seeing yet another machine hooked to him brought back hospital flashbacks and a feeling of sadness I wasn't prepared for today. I know it is just the reality thing but wow I was taken by surprise.

I had to hold it together until after dinner then I went for a walk to a special spot and just let her rip. I don't even know what specifically I'm upset about just how hard it is sometimes to explain to my older daughter why her brother now needs another treatment. She actually said several times "It's not fair, I want a turn, I want a turn." Again, I don't care if she puts it on from time to time but it just struck me weird. I really am so glad to be using the vest and very thankful for what it will do for Ben. I just have to make friends with it like I did the nebulizer.

Anyone else suffer from flashback of hospital stuff from time to time when their health changes or routines are changed? I feel better now. It just refreshens everything for a while. Will the grief ever truly receed?

Jody

 

[NoExcuses]

i have flashbacks of the hospital often. granted, i'm not a mom to a cf-er, but i am a cf-er.

i remember my 1st time in the hospital getting panic attacks for the 1st time in my life.... thinking i was going to die. I was 9 years old and i didn't understand why i was in the hospital.

i remember a nurse trying to put a PICC line in my arm in 1990 - the procedure was much different then than it is now. i've never had so much pain in my whole life as i did when i was having that procedure done.

i remember going home at age 15 after my 2nd hospitalization in 1997. i had a roommate then - a girl about my age from central america with cf. she had no family here in LA .... it was just her. and i arrived at the hospital after she had been there for a few weeks, and i got to go home before she did. i remember crying for days after i got home because i felt so guilty that i got to go home to my family and this poor girl who didn't even have a family didn't get to leave the hospital.

i remember being in the hospital twice in 3 months 2005 thinking that this was the beginning of the end. my "mild" cf had finally turned into something worse. i wasn't going to be able to work and i would be in and out of the hospital for the rest of my short life.

hospitals are scary. i consider myself a tough cookie but hospitals are one of the few things in my life that will haunt me forever.

 

[anonymous]

Hi, I just read your post. I'm seeing what other people think of the vest. When my one and a half year old son was three months old, we had a month long stay in a children's hospital. Twice he went into the PICU on a respirator. Sometimes I find myself thinking about it all, usually late at night, and I fight back tears when I picture him on the machine with IV's coming from everywhere. Especially if I'm watching something on TV and I see a sick child in the hospital, everything comes flooding back. It's nice to know I'm not alone, and you aren't either.

 

[DEES4]

Jody,
I am the same way.....I hate anything new to be added...something about it just makes me sad. It makes me want to cry even when they increase my sons enzymes (just lately increased it to 3-4). They also added pulmozyme (which I think I already told you that). It came yesterday it this huge foam cooler that said Medical Emergency on the front. It was packed all in ice bags.....anyway just getting that delivered to my front door really gave me a yuck feeling. I dont think I will ever truly except this diagnosis of cf in my heart. I do his treatments and his meds and I am not stupid...I know all about the reality of cf. But this is my son and I will never quit believing and hoping for a long and happy life for him. By the way...sometimes if I have a good cry (like the one you had tonight) it just makes me feel better. I am sure that you will get used to seeing you son use the vest just like you did the nebs....just give it time.
Carrie
Mom to 4
2 year old w/ cf

 

[anonymous]

Jody,

I totally understand where you are coming from. Sometimes I think I have some post-traumatic stress or something(Not that severe but still). You are the mother, an adult and have a greater understanding of the"meaning" behind the treatments. My son, almost 8, no CF wore my daughter's vest for the first time last week. I think it was wierd for him and me but he wanted to try. My niece and nephew love to wear the vest so they get a turn if they want. We just put it on the lowest setting and only for a minute or 2. I let them know that the vest is not a toy and has a specific purpose and they are fine with that. Keep in my mind, your children will take your lead when it comes to treatments; make it positive not scary and they will follow. We are fortunate that these treatments are availabe to us and we can take advantage of them.

My daughter when she was born had a meconium ileus, requiring surgery, not only being a mother but an RN I felt so helpless. I have a good understanding of what can go right and wrong in surgery. at 5 months she had another life-threatening bowel obstuction from adhesions. I remember, holding her at children's hospital(all by myself) in the hallway after she had some ultrasound to figure out what was going on. I was terrified, she was lethargic, in pain, I certainly thought it was a possibilty she might die while I held her that night in the middle of the hallway at 3 am.

When Maggie cultured for MRSA the first time I got off the phone with the nurse and cried like a baby.

It's frustrating, to be the adult, and grasp what things mean. We are only human, I guess we need to be honest about how we feel but not scare our children. Sorry I'm rambling but I understand the concept and often think of these things.

I rarely cry in front of the children, once when my son when he was 4 no CF said we can't leave the hospital without his baby sister(her 1st operation) And again the second operation, when we didn't know what was going on with Maggie, I just held her and cried ; it reminded me so much of when she was born.

Boy, this must have struck a cord with me!

Rebecca(mom to Sammy almost 8 no CF and Maggie 3 1/2 with CF)

 

[CFTwins]

Hi Jody...

I posted my happy messages about the Vest... but I had a similar moment too this week. Our babysitter was here to learn about the Vest.. and at the end she said "Isn't the Vest so great -- and that they like it!" And I said to her -- it's great and sad all at once. My hubby didn't quite get why I was sad about it all too -- so I was so glad to see your post.

Rebecca -- thanks for your post on MI too... it resonated with me too.
Anyway - I guess that's why I'm on this board. Thanks!

Stacy

 

[JRPandTJP]

thank you all for your posts...it helps to know I'm not the only one out here that still carries these memories around. I wrote a bit about this last summer, I'd like to share it:

"As I move into my pain, yes it is only mine, I stand tall waiting for the flood to come. Ahhh, yes, there it is, a release of deep sorrow, fear, pity, anger, resentment, despair. You name it, it is in there somewhere. I'm called to embrace these lonely, hurt pieces within my being. I must go into it fully, allow it to be felt, heard. I want to throw something and watch it break into 1,000.000 glorious pieces. Pieces of me lying on the floor, chards sticking into my feet, my future, penetrating into the very way I walk threw this life. I walk whether I feel like it or not, searching for a way to remove the chards from with my being. My life was a neat little package before this pain. Pretty, together, nice, clean. Then the gift of my son happened. He made me into a real woman. I became raw, real, weak and strong all in one. Most of all he gave me the gift of finding my true self. I am something more than my outer circumstances. I am caring and resourceful beyond measure....So while the parts that need tending to, come foward, they will be treated gently. But they will be gently guided back to a place where greater things can happen. Pain is one thing, rollling around in it and making it coffee and scones, quite another. This pain and sorrow will not define me, it will not become me."

from a CF momma's heart

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>JRPandTJP</b></i>


Anyone else suffer from flashback of hospital stuff from time to time when their health changes or routines are changed? I feel better now. It just refreshens everything for a while. <b>Will the grief ever truly receed?</b>

Jody</end quote></div>


Jody, it happens ALL the time for me. Both my kids have g-tubes and the feeding pump is on an IV pole. They also have neb compressors in their rooms. Every once and a while we move the stuff around (like to vacuum) and I get a glance of their rooms WITHOUT all the medical stuff. Surprises and chokes me up every time.

The answer to your second question is NO. It gets better and it gets worse but it never goes away.