Wednesday, July 22, 2009


Yesterday I took Haven to the hospital to get her testing and lab work done. We had to bring wonderful bagged surprises for Nurse Katie. :) This was Haven's 1st repeat testing for the viral infection. I guarantee she still has the infection so we will restart our 3 week of negative testing next week.

Here is Miss Haven hanging out in the isolation room. She is not allowed to stop at the front desk and get her vitals done where the other children have it done. She is also not allowed in the playroom so we had a bit of a battle there. They brought everything to her. Blood pressure was great 100/65 but her weight is now 78 pounds. This I was not happy about but we did only start walking this past weekend after over 4 weeks of laying in a bed.

Nurse Katie taking Haven's blood. Our port wasn't working too well so it had to be flushed extra to get the blood flowing.

After Katie checked Haven out the Hi CY specialist came in. She only works with children who are on the Hi CY treatment. She asked me if I had all the rules and if we were following them as these are the best way to keep Haven infection free.

Well no....I never got any rules. Kris and I were trying to figure out what we could do with Haven and where we could take her. I had talked to the other mom and she gave me a general outline of her son. But I never would've guessed at these restrictions. Obviously what we did last weekend with her IS NOT ALLOWED!

Place Haven can't go:

  • Grocery stores
  • Churches
  • Malls/Department stores
  • Restaurants
  • Crowded outside places
  • Gardens with lots of plant life
  • Pretty much anything that has a door and contains people
  • If it's windy she should not be outside

We also are supposed to have her in the GREEN mask not the pink mask. The pink one does not protect her from any germs. Those are only for the health care workers and us so we don't sneeze on her or give her germs. So of course everything ran through my head of where we took her and with only the pink mask on. She will now only wear the green mask and I got a few more from the hospital when we were there.

Food Haven can't eat:

  • Fresh fruits and veggies
  • Soft cheeses
  • French toast
  • Microwave food must be checked for any cold spots
  • No fast food restaurant food
  • Nothing from a machine (fountain soda or soft serve ice cream/yogurt)
  • All meats cooked to a specific temp
  • Meats must remain separate from other food in grocery cart, shopping bags and refrigerator
  • No DELI meats one told me about deli meats and we've been eating stupid turkey sandwiches. Pretty much anything someone could touch or could be outside is not allowed. So now I'm relooking at our food again. It has to be low sodium, low sugar, low fat, low carbs, and not touched by anyone!

I was a bit upset that we didn't have all of these rules ahead of time. There are 10 pages of rules so the above is only a few. We can take Haven out she just can't be where any other people are! AWESOME!

But we will follow these specifics very close as we do not want anything to prolong her treatments or to cause her to be back in the hospital. EXCEPT they want her to drink whole milk - I have to draw the line at some point. We only give her skim fat free and that will remain as is.

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