Adding insult to injury
Looks like word has gotten out about our little blog. Once confined to friends and family, it appears that our audience has grown to include people that we did not directly invite. That's OK. This is the Internet, after all. Free information, free speech, the whole shooting match. In light of some recent 'feedback', however, I would like to set the record straight on a few things.
This site represents our emotional and experiential diary. We use this space to vent a small portion of the overwhelming tension and frustration that we feel on a daily basis. The site also serves to keep family and friends up-to-date on Ryan's health. To a certain extent, our little blog manages to keep us all sane (some more than others) during a completely insane process. In other words, this site is our therapy.
The entries in this blog express the way we feel about what is going on every day. The idea that we should qualify, justify, or censor these feelings is absolutely absurd. Anyone that would suggest such a thing is more interested in protecting their own self-image than caring about a seriously ill child and his family.
For the record, we will never lower our expectations for Ryan's care. Mistakes happen, but they do not need to be repeated. A patient's advocates (namely, Mom and Dad) should be kept in the loop on all medical decisions related to care. Extra precautions should be taken with immunocompromised children. Are these expectations really that ridiculous? Too damn bad.
Bravo, anonymous! You showed us. You've said your peace, please never post again.
posted by Keith at
3:18 PM
4 Comments:
Oh jeepers, that's the last thing ya'll need. Bravo for the great responses! Hopefully you won't have to add this to the list of all you have to deal with. You're in our thoughts and way to go Aunt Marilyn: Smack Down! :)
-Jocelyn, Tracy and the Fisch
1:00 AM
Dear Cheryl & Keith,
No one knows your son and unconditionally loves your son like you. That said, continue to advocate for your son like you have been doing these long weeks. We too had a few "sloppy" nurses when our son was transplanted and we quickly told the charge nurse we would not allow those two nurse into Jordan's room. We didn't care if we were the talk of the floor or not, we only cared to get Jordan out of the hospital alive so what if we didn't make friends with two "substandard" nurses? You will never see them again when Ryan is released and you will be taking your precious son home. We were told at the beginning of our journey by another transplant mom to never question your judgment and we pass this onto you. Also, we were advised by our social worker during our process that parents suffer from post tramatic stress disorder (PTSD) from this life-altering experience so what you feel is to be expected and will continue for years. You both will be stronger and different when this is done but your son will benefit from your love.
4:30 AM
Cherly & Keith
Although this site may be your emotional and experiential outlet, that does not make your concerns and criticisms any less valid. How anonymous could take the position he/she did in response to your last blog is especially outrageous. How can any rational person believe that you were overreacting in light of the nursing staff's blatant failure to provide Ryan medication he was to receive and then lying about doing so. Not only are your criticisms justified, but you have taught all of us who have never had to experience what you are going through a valuable lesson. If I am ever in your position with a loved one in the hospital, I hope I will have the same courage and tenancity you two have exhibited to insure my loved is not harmed by those who are charged with his/her care. My thoughts and best wishes are with you both.
Sarah C.
9:23 AM
Cheryl & Keith-
It's Allison again...can you send me your email address to aydwoodrn@hotmail.com so I can keep in touch in a not so public way?! :-) It seems your blog is getting quite the reception these days....
Allison
9:29 AM
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