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MRSJOH
04-01-2009, 06:16 AM
gee it's funny how when this all started, pre birth, I knew nothing, figured just sit back, let the medical people tell me what to do, we have great care, many excellent nurses, but we have had some problems along the way. The hard part, is that mistakes can't be made, the outcome is too great.

I have gone down to patient relations 2x in 1 week due to trach problems. One was the clog, the nurse not listening until it became severe, Jasper not breathing, turning blue, stopped moving. Also I had the trach out ready to change, nurse and resp were doing deep suctioning, since then the AWESOME trach expert nurse we have there confirmed we should have just replaced it, (i don't know what nurse and resp where thinking) and the nurse apologized over and over how sorry she was that she didn't listen to us...

I came in yesterday morning, Jasper was having surgery for craniosynostosis, we got there nervous for surgery and the bottle of water for the mist color was EMPTY, and he sounded so dry and raspy, again another nurse I am so sorry UGGG what is going on?

sorry doesn't cut it, if he gets dry, he gets thick mucus, it clogs, he stops breathing, sorry isn't going to fix it. I don't want to be the obnoxious bull dog mom. I am an easy going, happy go lucky person, who now has to be this crazy watchdog or else something catostrophic might happen.

anyway, sorry for the long post, just wanted to share, and to let anyone else who was feeling they didn't want to speak up, speak up, or else the problem won't be recognized and the next time it will happen to someone else.

My little figther
04-01-2009, 06:58 AM
You are absolutely right, speak up - bottle of water for the mist color was EMPTY a couple of times for Cedric as well - he clogged up as well - luckily I was there. Many nurses are very good and do their jobs wonderfully but some are sometimes lazy or are overworked and as you said a sorry is not enough when lives are in jeopardy. As a parent we have to rely on the medical teams but as a parent we also have to step up and speak when we feel that things are not right. Good job!!! Jasper has a great advocate in you.
Michelle

KJKK8437
04-01-2009, 08:04 AM
We had the water bottle problem too. Once it astonished me because the nurse in charge of Alex that day used to have a trach and was great in telling me how it felt and everything. The answer? "Respiratory is supposed to do it."

Sorry -- like I care who is supposed to physically change the bottle? It is everyone's responsibility to look at it -- the nurse, respiratory, the tech that comes in to look at the settings and write them down. Someone should have noticed.

It is hard, but you are doing a great job, Mom. Hang in there.

TommysMommy
04-01-2009, 08:12 AM
For as many hospital stays Tommy had, after ONE dry bottle, they made sure to have one ready for him the moment he was wheeled in to PACU. Believe me, it only had to happen one time. They knew me as soon as I hit the floor. I'm very pursuasive. :) I started having his attending write it in his orders before surgery to have a mist bottle ready when he got there. The nurses can't argue with a written order.

JWorthington
04-01-2009, 08:33 AM
I'm sorry this happened. I hate it when Sam is in the hospital. Myself or John are always there, we never leave him because the few times we have, something has always happened. It's laughable really - out in the community, at home, school, or wherever, our children have one-to-one care. In hospital they have a nurse who probably has 4 or 5 other children to care for, so is unable to provide the same standard of care as the children get outside of hospital. it's bloody daft!

TommysDad
04-01-2009, 10:02 AM
I'm sorry you have to go through all of this, but thankfully you were there!
And you are absolutely correct, call someone's attention to any wrong doings so it hopefully won't happen again!

~Maggie

suzanne2545
04-01-2009, 11:48 AM
I'm sorry this happened. I hate it when Sam is in the hospital. Myself or John are always there, we never leave him because the few times we have, something has always happened. It's laughable really - out in the community, at home, school, or wherever, our children have one-to-one care. In hospital they have a nurse who probably has 4 or 5 other children to care for, so is unable to provide the same standard of care as the children get outside of hospital. it's bloody daft!

Another one of the things I adored about Sick Kids in Toronto. Trach = constant obs!!! Period. The nurse can't even go to the bathroom without another nurse stepping in or approval from a trained parent.

"bloody daft" Think my Michigan friends will laugh at me if I start using this great term?

Hope
04-01-2009, 04:27 PM
I don't want to be the obnoxious bull dog mom. I am an easy going, happy go lucky person, who now has to be this crazy watchdog or else something catostrophic might happen.



You pretty much hit the nail on the head -- this is the new you, The Obnoxious Bulldog Mommy.

Just start humming "Who Let the Dogs Out" as you walk down the corridors to get yourself psyched up ...

Hope

kirafaesmom
04-01-2009, 04:44 PM
You pretty much hit the nail on the head -- this is the new you, The Obnoxious Bulldog Mommy.

Just start humming "Who Let the Dogs Out" as you walk down the corridors to get yourself psyched up ...

Hope
ROFL.....thanks Hope; that song's stuck in my head now! We too have had the water bottle issue....with much the same result. I'm beyond thankful that we've been able to stay out of the hospital since Kira's seperation/trach surgery.

Gretchen(Celia's mom)
04-01-2009, 09:16 PM
:hug: Don't worry,,You will get good at the mean bulldog mommy thing!!!