Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, January 20, 2016

Random Hospital Things

Last week when Angela was here at the hospital, some darling person was going around popping out the elevator call buttons. The first time I found one I went to grab someone to see how to get the elevator to come up. He was all "oh, go ahead and put your finger in there and push it. It works." And I was all "Umm I am not putting my finger in there with wires and stuff." and so he did it. The next morning when I came back he had taped up this sign. Go ahead, put your finger in there!

There are two cafeterias here. One is part of the Children's hospital but the hours are strange and they never seem to be open when I am here. And yet, I'm here a lot! Most of the time I walk down to the joining adult hospital because they have a cafeteria that seems to be open 90% of the time. Anyway, the woman who seems to be in charge at the Children's cafeteria needs to find some humor in her life. Seriously, she is the most crabby person I've ever met here at the hospital. I'm one of those annoying people who have to crack a joke about the dumbest things and I have never been able to get a smile out of her. One day a few weeks ago I even said, "Smile! It is a beautiful day outside (and it was!) and we're alive and breathing!" and she just started at me. I have even tried signing to her in case she has hearing loss and can't hear me. Nothing. No response. (I have heard her talk to people, by the way) I have now made it my mission to make her smile. I think today I will bring her some flowers.

Years ago, before HIPPA became the law of the land, it was fun when visiting a hospital to go up to the maternity floor and look at all the new babies in the window. Do you remember doing that? I wish that was still allowed. This hospital has a new Mother and Baby center that just opened. Its fun to see the moms coming in who are in obvious labor and know in a few hours there will be a new baby in their arms. Its energizing to me. I also get to see lots of people leaving for home with their new babies, and the first-time parents with a TON of stuff to bring home with them. I've also seen people who have obviously been here a very long time, probably in the NICU, with their babies and have months worth of things they've collected in their hospital rooms. I'm so excited for them going home, even though I know its probably both exciting and scary for them, all at the same time. The entrance to the Mother and Baby center is right next to the elevators up to to Angela's room. I wish I could find a way to sneak in there and see the babies!

Sitting in the PICU with Angela makes me so aware of how lucky we are. We have amazing healthcare available to us, something that is not the case world-wide, or even in our own back yard, sometimes. There are people here who's kids are so much sicker than Angela. I mean, we made her sick by giving her drugs to clean out her blood. It is a mostly-predictable process. (other than the fact she didn't respond!) But there are kids here who are several hours away from home, their parent or caregivers living at the hospital with them. We live just a few minutes away. They are recovering from major trauma, sudden acute illness, or sometimes and end-of-life process. Last night there was a very large family sitting out in the family waiting area which is next to the elevators. Many of them in tears as they try to process what is happening to their loved one. I said a prayer for them all as

If you're not on Facebook, you missed the fact I messed up my back sleeping on the pull-out bed thingy in Angela's room. After a trip to the doctor I'm feeling a bit better. Still, the hospital needs a full-time massage staff. Parents go through a lot with their kids here, and the stress takes a toll on their bodies. A massage every couple of days would be a good thing!

And someone to cut hair! There are so many parents here who can't leave. I have met a few in the last few months who have been living here with their kids, who are feeling desperate for a haircut, but don't feel comfortable leaving the hospital.

All you g-tube parents reading: When Angela got her gtube I started buying gtube pads made by various sellers on Amazon and Etsy. I found one I LOVE!!!

Angela's nurses are always commenting on the condition of Angela's stoma, and how there is never any granular tissue or skin breakdown. The pads I order come in a variety of fabric colors and patterns, for both boys and girls, babies and older kids. I would love to be able to donate a set to new gtube parents who are just learning to care for their child's stoma site. I created a wish list on Amazon if you would like to help me out with this project. You can find the wish list here.

A HUGE shout out to the groups from the Ronald McDonald house who love to feed the families!!! Ok, most of the stuff is not on my approved food list, but its still a great way to take care of people who are really stressed out and tend to eat junk food while caring for their sick kids. Personally, I have not eaten fast food in a month, which is probably a record for me.

Why has the second floor parking pay kiosk thinging ALWAYS broken? I have never yet seen it working. It makes it confusing for people who don't know their way around here to pay for parking and then find their cars.

Shhhhh I have learned how to park down here for free.

Angela is waking up. Time for me to go back to mom duties!!! 

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