Tuesday, July 1, 2008

Faith slept the better last night than she has all week. She only woke up a few times- yay!!! The culprit was identified; Faith is growing pseudomonas in her trach. This strain of bacteria is almost a rite of passage for trach kids- almost every trach kid I know is colonized with it. I guess Faith just felt left out. We thought something smelled different this time, and it was. So here's to another drug resistant bug she's colonized with- yipee! ;)

Today is July 1st- you have no idea how much that freaks us out. We've had a lot of drama with the nursing situation (which I won't go into detail about....) but basically our goal was to find a skilled, reliable nurse this summer. In theory we had a good 2 1/2 months to become comfortable with them before the school year starts and we'd leave them alone with her. It's July 1st and we haven't had any luck. This comes as no surprise since we spent 8 months in the hospital waiting for nursing. As each day passes the knots in my stomach tighten- knowing that ours days are limited. I just wish we could drop Faith off at a daycare or hiring a nanny or something. In those instances you get to interview and pick a choose the people you want taking care of your child. Instead we are at the mercy of our nursing agency. There is a day care that's an extension of Children's who caters to medically fragile children- Medicaid would even foot the bill for Faith to go..but Faith can't go since she is colonized with MRSA. Which is very frustrating because the MRSA is in her trach and she is on a vent, so it's a closed circuit. Did we mention this daycare is right on our way to work? Rats. The only thing that helps me remain positive at this point is that there are 31 days in July. Ok minus today we have 30. We need a nursing miracle!!!!! (And while we're at it we'll shoot for the moon we need a NIGHT nursing miracle!)

4 comments:

Marissa said...

Glad to hear she finally slept.

Praying hard for a nursing miracle!!

Alicia

Anonymous said...

What if you posted a help wanted note at the different NICU's in town. Maybe there is someone retiring or wants out of the hospital? How about the NICU association in the area. There is state registry of neonatal nurses that is listed and they have their own journal (national of course- but you could publicize an ad? They will not go to you- you must go where they are- list those places and blitz them. Just trying to think outside the box...Love, Libby

Ann said...

Libby's idea is a good one. When we moved from Missouri to Arizona, the nursing agency couldn't (wouldn't) find us a night nurse. So, I sent out a "Wanted" poster with a picture of Jack on it (pictures are very important, especially when you have cute kids like ours :-) and I sent the "Wanted" poster to all the PICUs in town (I guess I should have thought of NICUs too). I got one response and it was from a PICU nurse who worked nights a couple days a week. She signed on with our agency only to work Jack's case. It was a perfect fit - a PICU nurse who was used to working nights. Unfortunately, she moved to California and we are once again night nurse-less. I'm actually in need of a nurse for a few hours every evening when our day nurse leaves and I've asked my nursing agency for help - but, they are worthless. So, I'm going to try the "Wanted" poster again.

Good luck and here's hoping you get a night nursing miracle.

Ann

Anonymous said...

Hey there my sweet sweet angel! Aunt Susan is HOME!!! I was having BLOG withdrawls! Sheeesh! But all is good and I am all caught up! Seems you have alot of "drama"in the past 2 weeks! Hmmmmmmm...well...seems all is good now! NOW ALL WE NEED IS A NURSE! I KNOW it will happen very soon....so keep praying sweet Faith and it will happen..God is good that way! =)

Well keep looking gorgeous as usual and know this Aunt loves you and adores you!

Miss you pumpkin!

Aunt Susan , Uncle Mike,Steve(bootcamp/field training for ROTC) and Michelle)
XO XO XO