Sunday, September 13, 2009

Defining Boundaries

Last week, we made a post about how fragile Eli's health is. We noted concerns about coming across bluntly. Today, we were reminded that while you all say "Oh, I understand," the reality is that you don't. Please stop telling us you do. Please let me explain how grim the situation is, and please do your best to understand it. Eli's outward appearance is no indicator of his health. He looks great, yet he's always one step away from the ICU. We can no longer afford to have any concern for peoples' feelings being hurt by our strict measures.

If you think you might be sick, stay away.

If you have "just a tickle" in your throat, you are a lethal threat to Eli. Stay away.

If it's "Just a little nothing," stay away.

If you passed a friend in the grocery store who has a slight cough, stay away.

If you've been around someone who's been sick, you're a carrier. Stay away.

If you've been around someone who's been around someone else who was sick... stay away.

This week, we had to ask Eli's physical therapist not to come in the house because she thought she may have been around a sick kid last week. She said she felt fine, but also admitted that doesn't mean she may not still be contaminated. She now doesn't enter the house without rubber gloves and a surgical mask over her mouth.

This is a serious message, and we need you to understand and respect it. We are entering into flu season. The flu will kill Eli. Today was Eli's last church trip for a very long time, and we only did it because it was outside in the park. Paige cannot be a part of AWANA. Paige cannot take part in play dates with friends. Paige cannot go to preschool. We can't sign Paige up for gymnastics, no matter how much we'd like to. We were forced to miss a birthday party for a dear friend yesterday, because we just can't take any risks. We have been forced to isolate even our very selves, so that we don't become carriers. When Paige got sick, we didn't see her for a week, as she couldn't be home. One evening, I put serious consideration into getting hotel room here in town, because I was concerned about being a carrier, as well. My mom flew into town from the Seattle area over a week ago, but hasn't seen Eli yet, for fear of contamination. We demand this level of care and concern.

Every day when we come home from work, our first step is to use the hand sanitizer at the front door. Then, proceed DIRECTLY to the shower without touching anything, shower with antibacterial soap, then change into new clean clothes. We have a HEPA filter running 24/7.

We are now in lock down. We will be shut-ins through the fall and winter. I will say it once again, Eli is always one step away from the ICU. He will be seen only when necessary. We CANNOT have another close call like we did a couple weeks ago. His mortality cannot afford it.

We pray the severity of the situation translates well. Yes, it is intended to scare you. That's the same edge we live on every day. Eli's cardiologist has all but verbally admitted he doesn't expect Eli to make it through this season, but he's hinted at it very strongly.

Please pray we make it through this winter.


Amy said...

You guys are loving Eli with the greatest love ever! You have worked so hard and sacrificed so much, you are wonderful parents! As much as we will miss your physical presence this fall/winter, we know it is for the best! We will pray you through it! Go Eli!

The Cipolla Family said...

You guys are incredible parents. The love you have for your children is evident in every move you make (or don't make). We will be praying for Eli and for all of you this winter. May God be with you during this time and always.