We have been home now for almost eight months since our discharge from Children's (the first one, not the short prolapse visits).
As we went home we approved to have a nurse in the house to help with Ellie for 10 hours a day for a total of 70 hours each week.
Until this month we had four nursing agencies looking for nurses for us but due to a serious shortage of nurses in Boston, we weren't able to find a single nurse to take a single shift for us.
Not one.
Last month we got a reprieve when a murse (male nurse) who had some experience with babies a while back and was coming back into pediatrics came in to work with Ellie a few da6ys a week. This wasn't ideal for us and we never felt very comfortable with his nursing skills, his basic baby skills or his comfort with Ellie. We were always watching and listening to make sure that things were all right. It sort of defeats the purpose of a home nurse if you don't feel comfortable and want to help them do everything. Our discussion would often come back to asking ourselves if we would ever feel comfortable leaving her alone with him? The answer was no to begin with and three weeks in it was still very clearly no. With this situation we might as well do it ourselves.
Yesterday we met with a specialized pediatric nursing agency who had found a nurse for Ellie who is just great. She has three kids of her own, loves babies and is a very competent nurse who trained to be a pediatric nurse. She has lots of experience with G-tubes, central lines and ostomies.
To make it even better she wants Ellie to be her only patient and would like to come for a full week each week.
I guess patience pays off.
Ellie really likes her, we really like her, and after just a morning we are much more comfortable with her than we had been with her previous nurse after weeks of time. And as a bonus she lives near Wayland and can come with us when we move next month.
A good day.
As a result of this, Abby is off working on the house, I am working on the fish without any distractions and Ellie is happy as can be.
And her curls are thriving in the humidity:
On a sad note, the POS Subaru finally went away for good this morning, a donation to the Kidney Foundation car program.
205,278 miles was the end of the road since neither Abby nor I was comfortable driving it to the post office let alone down the highway and it had sat as a very un-Wellesley eyesore for the past few months.
The Kidney Foundation will hopefully get some benefit from selling it.
To be honest, I thought that it would cost us money to get rid of it so a donation is just great as far as I am concerned.
Tuesday, July 31, 2007
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5 comments:
Spectacular pictures - they really capture her personality. Do you ever go back to check the blog entry for one year ago today? The difference a year makes is absolutely mind-boggling. What a girl.
I almost called you to ask for pictures of curly-girly. I heard the humidity gave her a new do! But poor thing, I can tell she's miserable as usual... try to cheer her up!
See you this weekend...
Look again, I added 'fro pics for you...
I was mindlessly staring at the blonde curls on my computer screen a minute ago (procrastinating with a story I'm working on) when I realized that she may be the only Brogan child ever to be born a true platinum blonde? I wasn't sure that was actually possible but apparently she lucked out.
Gib and Abby,
We can't thank you enough for Ellie's blog and information about Omegaven. Without you, we wouldn't have been able to find out about this wonderful treatment. My son's eyes are white again, I have you to thank for it!I hope that we will see you before we leave Boston, but in case that doesn't work out...I just wanted you to know what an impact you have made on our family and our son's life.
Thank, thanks, thanks!
Connor's Mom,
Erin Maruska
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