Sunday, October 28, 2007

Bad nursing

Last night's nurse Carl fell asleep again after we initiated a review with his employer following a suspicion that he fell asleep last week, and indeed a stern chat with Jason last night prior to the sleepover. For some strange reason we gave him the benefit of the doubt. Tonight's nurse is a no-show and despite insistence with the agency, there is no back up plan. Two nights on the trot. We are beyond exasperated and angry.

I have 3 appointments tomorrow including with physical therapy and the LA Unified School District and I'm sitting up preparing for another all nighter whilst Jason gets some rest after his all nighter last night. I know this is part of what many mothers experience, lack of sleep, but in Reuben's case, we can't safely fall asleep. And unlike the nurses, we have no desire to do so when looking after a chronically ill baby.

Poor nursing cover is blamed on the national nursing shortage.

There's a great deal of work to be done this week, 3 outpatient appointments at Children's (ENT: Ear, Nose & Throat re the trach, Pulmonology re his lungs and Opthalmology re his eyes), and administratively, several more petitions to try to get financial assistance toward the BAHA hearing aid ($2,600 for his left ear), more petitions to federal, state and local authorities for aid, waiting for our new healthcare company to start service (we sacked Apria on account of lack of delivery of critical supplies for homecoming and a week of ineptitude on their part) and replace the awful decibel guzzling suction machine which even Reuben can hear, and yet, at times like this, I wonder how we're going to have the energy to move forward this week with Reu's development. Much of this frightens me, the strong urge to catch up. If any mother expressed competitive concerns about their child's intellect or development, well, we had to give that up long ago and it's a practice I was never keen on in the first place, yet this really is in a whole new stratosphere.


ellen charge said...

sleeping y do they sleep so much thats bad lazy as hope u get soemthing sorted soon

Eva Nichole said...

Hugs!! I hope you all find a nurse soon that knows how to do their job. We had Apria also and they were not very good at all. But when it came to billing they were right there on your tail. I wish we lived closer to help, I wish I could help with all our CHARGE friends. People say I am crazy because I want to help so many others and not recieve help myself but that is just how I am.
Here's to much needed sleep.
Crystal and Eva

skeybunny said...


Our thoughts are with you, that you can find a decent nurse and supply company. And that you both get some rest.

Sarah, Jeremy, and Evan

mighty max and mommy said...

Oh my friend, oh my friend...I am so terribly sorry. It is such a rough adjustment coming home when things are not working smoothly. Is there another agency you can add on? Have you talked with the hospital and told them what is going on? Sometimes they might have recommendations.

Please feel free to call me if you want to walk through some ideas.

You are in my thoughts. Right now the most important thing is to keep Reu safe and healthy...there will be PLENTY of time to work on development. Let's get everything else sorted out first, ok? Seriously...just being at home is a big development change for him! He has a lot to adjust to and take in.

Thinking of you...Amy and Max

Ericap said...

Such valid frustrations with such inept nursing staff, I am so sorry to hear the homecoming is tainted so much with lack of crucial support. I know that you won't accept it and will be on at the company to sort it out. I do hope that get the nursing support that you need and deserve.

Thinking of you all.

Love Erica