What the * just happened?

In my last post, already 3 weeks ago, we were all coming along fine, DD1 was looking fine, and Purl and I were riding high (ok still in the parking lot, but coming along just fine!).

Then wham, the world just tilted out from under our feet. DD1's little virus that had kicked her back a wee notch went from bad to worse and turned into a pneumonia like bad-boy with attitude, and the next thing we knew she was in major trouble. A 3a.m. transfer from the heamatology ward to the ICU shook us badly and I spent the first week watching as my baby struggled to breathe without being intibated. The only way to explain it was as if she was running, flat out, for about 4 days straight. Normal breathing is about 15-20 breaths per minute - she was breathing at over 50 breaths per minute at some points, like running a marathon for days. The body simply cannot do this for very long, and and at some point usually gives up and emergancy intibation is required.

This is not an experience any parent should go through. I spent several 24 hour sleepless days at her bedside, preparing for whatever might happen. As it was, everytime the doctors thought they might have intibate, I would go and talk to her, gently caressing her like when she was a fussy infant, and slowly she would come back from the edge bringing her heart rate down just enough and her breathing back enough from the danger zone, and over 5 days she was able to avoid the worst interventions. Never under estimate the powerful un-spoken connections between a mother and child.

After a week of ICU she came back to the ward, but was unable to walk or breathe without oxygen. It has taken about 7 days for her to start walking and only yesterday did she start breathing without her oxygen for a few hours at a time. Everyday we have been bundling her up and getting outside for some fresh air which has done her a world of good and today she will get a pass for a family event which we are all so excited about.

So what happend? Was it a virus? Well maybe yes, maybe no - nothing ever came back conclusive from the tests in ICU. However, it was the "it-looks-like-she's-having-a-heart-attack" and another 3 a.m. CT scan last Thursday night and subsequent diagnosis last Friday that tilted our universe on its arse - as if the Hodgkin's wasn't enough, DD1 has a new disease called Pulmonary Hypertension. This is devastating news and it has taken us a week to just get used to the idea. I never in the the last 2 years of her Hodgkin's battle thought she wouldn't make it, but last week, for the first time ever, I really wasn't sure, and I, indeed all of us, was very, very scared.

Our initial research scared the crap out of us, I can tell you, as up until a mere 10 years ago there was no cure and a life expentancy of only 2 years. Now there is still no cure, but better long term management of the disease has changed the forecast and there are more and more reports of people living productive and longer lives with the newer medications avialable today. Still, it is very telling that there is no discussion about her long term prognosis as yet.

What does it mean for DD1's future? That remains to be determined. Only time will tell. First we will watch to see how well she recovers from this incident, as she is very doing well by all standards, better than expected - does't she always! and is expected to come home with support this week. And she will begin one of the newest and most promising medications on the market today, Tracleer,  one of the latest wonder drugs to help people with this disease. She and I have spent many long afternoons this past week in the hospital park, DD1 all bundled up in her wheelchair, talking about how this will change her life, even more so than the Hodgkin's battle did, and how it will change all of us. What will her life be like, what will she do, how will she be. All questions I cannot, for the first time in 30 years of being a parent, come up with an answer for.

Have I done some knitting throughout this? Yes, when I could get my head to work right - a crocheted cotton hat for DD1, a second knitted one on its way, and I'm on the second of a pair of socks for myself. And in between, Purl and I continue our lessons with our most patient instructor Peter, who says I will be out and about for a nice back country ride very soon. This week we are practicing tight turns from a stop and controlled start. Apparently I have issues turning left, sigh.....

Knit on.....