Monthly Archives: November 2006

Day job

The day hospital at MSKCC has a number of “session assistants” on staff. These seem to all be recent college grads and it is an administrative job where they keep the flow of patients moving from the various places they need to be (fingerstick, exam rooms etc). I have a particular favorite session assistant because she goes out of her way to be helpful and you can tell she genuinely enjoys the kids. To get things done it this very busy clinic you have to be proactive and so I am always asking her to call the nurse to see if Nathan has orders for this or that. If you don’t do that…sometimes you sit there for hours. Anyway, she always seems happy to help even if I feel like I am harassing her!

I recently found out that she is a singer/songwriter. I went “home” (the Ronald) and googled her and she has a new album out and a video. She has a very nice voice. I wish there was a little less synthesizer but I am sure that using the synthesizer is a cost-efficient way to go when you are funding an album.

Funny to learn what people’s other lives are. I hope she find success in her music career.

Sarah Ferguson: Put me on ‘Dancing’

There’s MY princess, Julia – black dress and reddish hair .

I just can’t think of a good title for this entry

Those of you who know me would probably say that I am very even tempered and fairly calm. I don’t get excited about things and I keep a cool head about things others might get flustered about.

So – you will know that things are not good when I tell you that I broke my computer tonight.

My computer is old and crappy. It was barely working. I would have had a new one if I was in Colorado but have been waiting until I got home. Tonight, it started giving me shit as I was trying to write an email to Nathan’s doctor asking him to let Nathan out of the hospital even though it is against all the policies and procedures they have.

So – I gave it a good thump with my fist.

It still didn’t behave itself – it froze a little and then was not letting me do what I wanted.

I pounded on it a little more with my fist and now it is toast.

I truly had to restrain myself from putting it on the floor and jumping on it. The thought of wrecking the computer makes me smile and feel giddy. That computer has been such a DOG and pissed me off so many times and I am so pissed off about so many other things right now that I am itching to pound the thing. If it didn’t have its hard drive in it (which I am hoping to later recover some files from) I would totally beat it up and enjoy every minute of it.

Oh – and there is also the problem of the six year old in the hospital bed next to me watching me pound it and me setting a very bad example for him.

So – now what do you think of me?

I keep telling people – one of these days I am going to crack under the strain of it all. It’s not happening yet but every day it seems more feasible.

edited to say that I am posting this from Luke’s computer – which is having a sticky “E key” lately but is otherwise an obedient computer and I promise I will not abuse it

It’s in the details

Nathan is currently inpatient for fever and neutropenia. We have spent time hospitalized in 4 different hospitals and our current hospital, has the best peds floor…hands down. The unit is about 3 years old and you can tell they had a lot of input from both parents/caregivers and nurses. Some of these details are very small but can make a big difference in parent and patient happiness.

Here are the elements that make it great.

1. Fully dimming night lights low on the wall by the parent bed/chair. You can actually read or use the computer when your child is asleep instead of sitting on the floor outside the bathroom door with a crack of light coming through.

2. LAN ports all over the room to get online with. Connecting with the outside world keeps parents sane and also lets the patients get online to help entertain themselves.

3. A locking cabinet for the family to use in the room. It is good to have somewhere to lock up the laptop if you are heading to the playroom.

4. Flat panel TVs for each bed with a DVD player and FULL cable. The shared rooms at our home hospital have one TV for two patients to share. How the heck is that supposed to work when you have kids aged from 1 – 18 and parents having to decide what to watch.

5. 2 window blinds – 1 to block out light and the other to let it some through. It sucks to sit in blackness during the middle of the day because your child wants the blinds closed. I find I am able to pull up the darkening one a little and get a small amount of daylight. I usually do this while he is not looking, in small increments, so he doesn’t notice.

6. Parent menus. One of the hardest thing for a parent to do is find a way to feed themselves when they are with a child at the hospital. Here, there is a menu for the parents and when you call to order your child food you can order some for yourself as well.

7. A room door with full panes of glass in it that has blinds for all glassed areas. I can’t tell you how much I hate being stuck in a hospital room with a closed windowless door. I like being able to see people walk around out in the halls. I feel much less claustrophobic. However, I have been in rooms where there are no blinds on the door or only one of the panes has a blind and at night so much light pours in that you can never really get into a good sleep.

8. Thermometers at every bed. I can’t tell you how many hospitals or clinics I have been in where there is a never ending search for a tympanic thermometer. I was in the PICU of a very good hospital and they had 2 thermometers for the whole ward. I get so sick of watching the nurses or techs scramble for them.

9. Window for every bed. In shared rooms if there is only one window the curtain gives each patient half a window. Other rooms have at least one window per patient. There is nothing worse that sitting in a shared room on the “door side” of the room with the curtain drawn and the window on the other side of the curtain.

10. Ability to use cell phones on the ward. I know cell phones can interfere with some patient monitoring equipment but whatever they use here they do not have a problem with cell phone use and I can actually call my husband for free whenever I want.

11. Non-fluorescent wall light. After a while the fluorescent room lights can drive you mad. There is a regular, incandescent light on the wall that is bright enough to light the room.

12. Showers in the parent bathrooms. The ability to get clean without leaving the hospital is a very nice perk.

13. Washer and dryer on the unit for parent use. Many parents are basically living in the hospital so they can actually do their own laundry while they stay with their child.

14. Parent kitchen. The kitchen has a fridge and microwave for parents and a drink dispenser and most importantly a coffee/hot drink machine. No urn of coffee that has been burning all day. No feeling guilty because you have to ask the nurse to bring YOU a drink from the secret juice supply. There is even a small table for you to eat at if you wish.

15. Parent lounge. A no-kids room with comfortable chairs and a window to get away and clear your mind for a few minutes.

16. Enough pillows and blankets to go around that the parent can actually have some to sleep with. I have slept many a night without a pillow and blanket at hospitals. They never seem to have enough and it is such an easy way to make a parent comfortable.

17. Chair/bed that is actually comfortable and doesn’t separate while you are trying to move around on it. What more can I say about that?

18. Room chair with footstool. They actually have a little footstool for the non bed/chair chair. When sitting in the hospital room all day it is nice to be able to put your feet up after a while.

19. Playroom volunteers who will come and sit with your child so you can leave the hospital or even just take a break from your child for an hour.

20. Room doors that open and close quietly. I have been in so many rooms that the doors make a racket when you open and close them. Forget sleeping through a vitals check in the middle of the night.

Nice views

First off – a view of Nathan who seems to be feeling alot better this morning.

Then – some views out the hospital room window. We are spoiled by the views out the hospital room windows in Colorado Springs but this view isn’t half bad.

Rare allergy

The other morning I came to the hospital and Nathan was just waking up. He suggested I open the blinds. I opened them but it was too bright for him.

He said to me: ” Mommy, in the mornings my eyes are just allergic to light”

I guess he is kind of right.

Walking – the video proof

I previously mentioned that Lauren is walking now. I finally caught her on film with my camera phone today. That’s why the quality is so poor.

Fumbling in the dark

So – here at the Ronald we have two twin beds pushed together and one end table which is next to Luke’s bed. This means my glasses and other things I am using in bed are put on the floor when I go to sleep. This also means I have no clock next to me.

The other night Lauren woke up and I needed to find out what time it was so I could see if it was too early to nurse her. I reached down off the bed groping for my glasses.

Instead of my glasses, I produced the lovely pair seen in the picture, If it hadn’t been 4 in the morning I might have laughed.