Thursday, August 28, 2008

Hospital Length of Stay Still Questionable

After talking with the social worker this morning, we discovered that the best nursing we can get as of now is a nurse that will cover our day shift on Mondays and Tuesdays beginning September 9th. Right now that is not adequate enough for the doctor to allow Mikan to be discharged. So we are supposed to wait and hope that more nurses will pop up before now and then. If not...we are still stuck here waiting. Each day it seems like a new nurse or nursing supervisor up in the PICU comes by to talk to us and sometime in the conversation she says something like, "Well, the hospital isn't exactly a great place to live. It's a place where sick people come. We don't want him catching anything here. He'll be better off at home." This just makes the situation more frustrating because there is nothing we can do about it.

On the bright side, Mikan's steroid dose was reduced again today to .2mg. He had an eye exam that went well; however, we are currently trying to get him to relax after the exam. We can't get his heart rate under 200, so he's getting tylenol. He's not too happy.

2 comments:

Faith said...

Have you tried posting your own ads. That's what we evntually had to do to get out of the hospital- we posted adds on craigslist, interviewed them, THEN referred them to the agency. IT takes time, but well worth the effort.
Best of luck
Jen

Rachel Marini said...

Hi, I came across your blog from another blogger. I just sat and read all your entries on Mikan over the last 6 months.
I am so sorry you have had to endure so much in his short life so far!
My son Gabriel Josiah (same middle name!) will be 2 next month... His story is that he was born w/o an immune system... spent 8 months at Children's in DC.... in which he developed lung disease, hernia, reflux, had a bone marrow transplant, nissen surgery, hernia repair, slipped into a coma, was unable to be weaned from the ventilator, came out of the coma, got a trach, everything got set to come home, and he is still on the vent! He came home in August '07, so it's been a year at home with the vent. Sigh.
We have had our share of HORROR stories with the nursing agencies/nurses/lack of sleep/medical supply company frustrations/endless phone calls... basically what you're going through. So I can relate.
I wish I lived closer so I could help until you get the nursing figured out. We had one agency here in MD from 8/07-10/07. In that time we probably only had 50 hours filled or so! It was horrible. We switched agencies... I had to call around from a list my insurance company gave me of agencies that accepted our insurance... and I was blessed to find a good one. It started off great... full coverage... but even this agency had staffing issues. it took about 6 months to finally fill all the shifts (18 hrs/week days, 12 hrs/weekends). But even now we find ourselves in a predicament of losing our weekend nurse, so here we are without any nursing this labor day weekend.
We too get by with the help of family and friends.
I am so appalled that you were only given 16 hours/day for 30 days. What?! How can they expect you guys to live?? You will eventually want to get back to work surely... you all need and deserve full-time nursing coverage.
I have a 4 yr old, 3 yr old, and Gabe.. and I stay home with them. I have told them over and over again that I cannot take care of all 3 of them by myself- it is not physically possible.
We have Maryland medical assistance as his back-up insurance... it picks up whatever primary insurance won't cover. In fact our primary doesn't cover nursing... so we HAD to get Med. Assistance because we HAD to get nursing. do you have any medical assistance for special medical needs in your state? Somethign to look into.
Well I am so sorry to have written a novel here, but I had so much to say... because I was in your shoes a year ago. Please feel free to contact me if you need. and check out Gabe's blog!!
Blessings and prayers,
Rachel