Yesterday, as I was dressing Ethan for preschool, I noticed that he was covered with little red dots. Chicken Pox? Oh yeah, I remember....that was the one immunization that we declined. At that point, Ethan is just itching to go to school (ha! no pun intended) - he knows they are going to learn more about outer space - and he says something about making space helmets. And I have to tell him that he needs to stay home. Poor guy, he is so despondent. He tells me "Don't worry mommy. it will be fine. I can go." He wasn't itchy yet so he doesn't understand why little red dots on his chest needs to keep him home and away from other kids.
Almost immediately, my thoughts go to Rachel. When we made this decision not to immunize, we didn't have a little girl with so many problems. Would we have made a different decision? I'm not sure. Does it matter now? No. The question now is - will Rachel get this? And if yes, how will it affect her? I can't bear thinking of how irritating this might be to her and she really doesn't need more strain on her heart if there are complications. God, have mercy on her!!
We spoke with a nurse at the Flames House and called Health Links - I think this was the first time that Health Links has ever been helpful - and then I took Ethan to the Children's Hospital. As soon as I showed the admitting nurse Ethan's chest, we were isolated. Any other child they would have sent home but because of our situation, we stayed to get a doctor's confirmation as well as to discuss a possible way to help boost Rachel's immune system temporarily. We spent the whole afternoon in waiting in our little room - I realized quickly that I had not brought along enough toys or snacks - but Ethan did really well. I spoke with the Palliative Care Doctor on call. The emerg. doctor also consulted with Cardiology and the Infectious Disease Department. In the end, it was decided that the possible risks associated with giving her this blood product (which I completely forget the name for) probably would not outweigh the benefits. If Rachel does show symptoms of chicken pox, we should bring her in then.
We soon realized other problems - it really felt like someone had just tipped over the domino that was going to send the others crashing. Our main respite worker has never had chicken pox, and so we are now without respite. (except for two nights on the weekend) And no respite means no sleep. I feel bad telling her that she shouldn't come but I really don't want her to be affected by this - they have enough to deal with right now.
We had been planning on going to the Flames House for a week, starting on Monday. We have been going over our allotted respite hours and we could really have used the break. But that is cancelled now. And what really makes us sad is that this adds more uncertainty and questions about our trip to Manitoba. I hate that. It's not just about the disappointment of changed plans - it's that we have lived with so much uncertainty for a year and a half. (And the lack of sleep etc..there are so many ways this affects both Dave and me) I'm not sure I even have the words right now to explain how this feels.
ok the kids are up and Ethan is ITCHY....lots more red dots. Time for breakfast.
Please pray for strength for us! We could really use some today. Thank-you.