Friday, August 28, 2009

The First Time My Son Died

Note from Ronnie: This is an email my mom sent to me regarding "the time I died". When she wrote it, she wasn't aware that it was going to be posted on the blog. I got her permission to share it with you guys and I think it's a real and raw account of what she was feeling during this event. To read about the account from my eyes please go to Part One and Part Two of "The First Time I Died".

Just because I thought I would share a bit of history... must remember, that your near death experience happened before you met every top person with any official title at UMC and before you became UMC CF "famous." When you enter ER now and you pretty much have someone sneaking you in the back door for fast service.

I realize our memories of this particular event will be different because you were laying on a gurney slowly being pickled by dehydration and I was trying to remain calm in a very anxious state of mind. I have spotty recollection of the entire event, but yet some parts are still so vivid.

My first memory is of a nurse asking me why you took so much medication? I believe I told her at least three times, "because he has Cystic Fibrosis." She was also amazed at all the information on you in the hospital computer. When I finally made it to a male triage nurse I desperately tried to explain CF, that dehydration was serious to a CFer and that could someone please at least start IV fluids. I pleaded several times to the male triage nurse, but it was like running into a brick wall. I called everyone I could think of...on-call peds pulm, 3 NE nurses station, one of the CF docs, etc. Bobby and I even discussed rolling you out into the ER parking lot and calling 911. At some point there was a phone call for me at the ER desk (I think it was a football coach checking on you) and in front of the male triage nurse I said, "It's not good, he can no longer feel the lower part of his body." Bam...within a minute you were in an ER room!

You weren't in good shape and I can't remember if you had even seen anyone medical yet, when things started going south. I had never witnessed anything like this and it was horrifying to watch. You started to breath really shallow and all the sudden your chest was literally heaving up and down on the gurney. I ran out of the room and the first person I saw was your 'angel doctor in the pink clogs'. She had treated you before and all I had to say was, "Ronnie isn't breathing right." She was in that room faster then a bolt of lightening. She was screaming your name, hitting all the emergency buttons, and then you stopped breathing. I can remember her digging her fist into your upper chest so hard that I thought she'd break something. As medical personnel were running from several directions, carts racing down the hallway, you started breathing again only to stop breathing. I saw the paddles on your chest and stepped out of the room.

I have no memory of what I was thinking as I stood outside the door. A doctor was stroking my arms up and down and telling me to breath. I know you started breathing again without getting zapped. Minutes later I hear your voice say, "tell my mom I'm okay." That is when I slid down the wall and just sat on the floor. It wasn't long and what seemed to be a 'very important lady' appeared and talked to me. I don't remember her exact conversation, but had thoughts that she seemed troubled and worried. My part of the conversation was repeating several times... clearly, "The nurses wouldn't listen. If only they had listened." and "They didn't even know what CF was."

I'm not sure why, but this last memory still puts a half smile on my face. Because you had stopped breathing you had to have an EKG. Who do you think was sent into the room to hook you up to the electrodes and the little ticker tape? Yep...the male triage nurse.

To make a long story short...Thank God you're alive and thank God for 'angel doctors in pink clogs'!!!!!

Love you,

I encourage you to share your thoughts with my mom as I will make sure she reads the comments that are left for her. I'm trying to convince her to write a couple of posts for this blog and I'm sure any begging/pleading/nudging or comments of appreciation will help greatly. I know a lot of you would enjoy a CF Life from a mother's perspective.

Thanks so much guys!

12 people had something to say...:

Katelyn said...

Thank you for posting! I always thought my parents were a little weird when I was little and would get sick and they'd have to take me in --- but now I see, every parent of a kid with CF has a different type of bull in them compared to other parents. They are just as much fighters as the kids are themselves. Seeing our parents be such strong advocates for us has taught us how to buck up, strap down, and eat whoever gets in our way alive. Ronnie is so blessed to have you for a mother.

Thank you for that.

Dan said...

I am amazed by this letter, and humbled. My daughter is only 3 years old, but I am certain that days like this are coming. Maybe not exactly like it because time will see more changes in the treatments, information, etc, but someday I could face the same thing. I'm not ready for that. Is there even a way to become ready for that?

Deb said...

oh ronnie's mom... this must have been so scary for you (and frustrating, to say the least!).

you've raised quite a wonderful young man.

hope to see you around here more often!

niki36 said...

Thanks for letting Ronnie post this..hope to see more posts from you in the future =)


Thomas said...

Thanks for sharing this. Quite a story and I am glad you lived to tell it! You and your mom are inspirational.

This also speaks to why we need more research on CF. My friend is running to raise fundings. Check it out:

pattisunshine, mom to 4yo CFer said...

thanks for the story - I too have been in your mom's position - CF awareness, PEOPLE!

BeckyBlender said...

As I read this, I couldn't help but think of my friend Paul and his mother. I've visited Paul in the hospital several times, and every time that I have gone, his mother has always been there. I can see that she loves him so much. I never really thought what it has been like for her, and reading this has opened my eyes and has given me a glimpse of what its like for a parent who has a child with CF.
Thank you so much for posting (:

Sara said...

Wow. Ronnie that is an amazing story and to your mom is an amazing writer. You should publish a book together! :)

Rachel said...

Thank you for posting this. I'm sure this was hard for your mom to write. I appreciate the opportunity to learn from her experience. I only hope I could be as strong as her!

Anonymous said...

As I read this, it brings tears to my eyes. About two months ago, my son (who was born in May) was diagnosed with CF. There's so many feeling that I could write about, but I think for this post I will just tell you what hope I have now. One of my biggest fears that I have had through the last couple of months is that my son will grow up and instead of trusting God, he would blame Him. I would love to read anything more your mom would be willing to post. She has obviously been a huge support system for you and been a guiding hand in your faith. I pray that I can be that for my son as he goes through all the struggles and joys in his life.

jdemott said...

This post is startling to me, a CF parent, and admittedly made me teary.

My son is 4 years old. He takes numerous prescriptions, does breathing treatments twice a day and has noticeable digestive issues. He voice is raspy, and he coughs more and more these days.

But, so far, we have never been faced with serious lung issues. Somehow, that has enabled my wife and me to maintain a certain amount of denial, I think. Maybe he'll be one of the ones who lives way beyond the average lifespan.

Of course, we pray every day for a cure, with hope that one will be found before our son has serious lung function deterioration.

All the while, we know what a serious disease this is. I appreciate your efforts and thanks for the comment on my blog, which led me to find yours. Your attitude is admirable, and what any CF parents would hope for their child with CF.

Anne said...

Dear "Ronnie's mom,"
Thank you for letting Ronnie post this! I would not only like to hear from you more often, I would thrive on it!!! My 18-month-old son has CF. My husband and I want to raise him to be a strong, confident, happy, faithful man of God... pretty much just like your son! Reading Ronnie (and Mandi's) blogs, watching the YouTube posts, and being a part of Cystic Life gives our family so much hope and so much joy. Thank you for blazing a trail for CF moms that follow in your footsteps. The openness with which your family shares their hearts is an incredible ministry! God bless you!
Annie Bridges