Chicken Pox really BITES

Change of plans again...

Yeah....this chicken pox thing is becoming an even bigger pain.  I had an appointment this afternoon with our Cardiologist, a Palliative Care Doctor, and someone from the Flames House - in order to talk about our trip plans and how we can prepare for it.  It's funny, I thought about how Abigail could be contagious and this is why she shouldn't fly but it took until today for it to dawn on me that Rachel could also be contagious. Well, it turns out that patients who receive the VZIG (immune boost for varicella) are actually considered 'contagious' for up to 28 days afterwards!!! (in contrast, the longest incubation period for the pox is 21 days)  

In other words - if Abigail does not get chicken pox before the 28th, we are safe to go on an airplane on March 28th, AND - if Abigail does get chicken pox, Rachel has to have another VZIG (they don't last long) which means that we would have to wait another 28 days before she is safe to fly...So potentially we are not safe to fly until the end of April.....crazy, huh??

We need a Doctor's note to fly with Rachel - because of the possible complications and because we want to take oxygen on the plane.  (Our Cardiologist highly reccommended us taking oxygen because of the different oxygen pressure - and we don't know how much it should help but it's worth trying) But because she knows about the chicken pox, she can't give us a permission letter.  Of course everyone feels bad about it, but it's just the way it has to be. 

So, now we are left with two options - wait to see what happens with chicken pox, or make the long drive across the prairies with a little girl who has to feed every hour or more and might have spells.  Once we make that decision to travel, then our doctors can get the ball rolling on setting up medical help for us in Winnipeg.  We hate to think that the opportunity to visit Manitoba might be slipping away from us.  It is been important to us on several levels. For one, we feel like we need to do something "normal" as a family.  We have spent so much time waiting for the next spell and yet here she is, nine months old.  God, give us wisdom in our decision making and courage too!

Rachel's oxygen levels were really low today.  It was in the 50's and now I can't remember if she said "50" or "in the 50's".  Certainly a large drop from the high 60's at her last appointment. But I have noticed that she has been sleeping more lately. And that always makes us wonder if she will have another spell soon. 

After this meeting, I walked across the hall to the Lab - Rachel had some blood drawn for Genetics.  I was glad to have that out of the way.  (otherwise we would have had to give a skin sample after death).  After these appointments, I often feel so wiped.  But it might also be that this insomnia thing seems to be making a come back too..blech! There's nothing more frustrating than knowing you should sleep and lying there awake all night.  I think there is more I should write, but I need to get the bedding ready for respite and get my kids off to bed.....

Good night! Oh yes, I received some wonderful emails today.  Thank-you so much!!! I hope to reply tomorrow...