My friend Cheryl Lynn likes to use this phrase a lot. I kind of tease her about it. But mostly, I really really like it. Because it sums up so well the attitude with which we should live out most of our actions on most days. Why do stuff that doesn’t really help you enjoy life?
But the way that I am mostly referring to it for the purposes of this post is in the way that blood is life-giving. As a Christian, i of course believe in the very real giving of Christ’s blood as the payment for my salvation. And I guess in some ways, seeing my daughter receive an infusion of blood that is not her own, as a way to restore life to her tired little body – really brought this home. how often do you really think of your own blood? Probably not until it is gushing out of some wound inflicted by a clumsy wielding of kitchen instruments or you are wiping up the few drops of it leaking out of a small scrape on your child’s knee that is inducing major wailing and flailing. And until you are faced with the realization that something is going wrong with that blood coursing through your veins and carrying oxygen to your body, you really probably rarely think about how very life-giving it is.
This week, we have had to confront this reality head on. Over the last few days since we were made aware of the fact that Kendall’s body was either losing too much blood from unknown source, or was destroying its own red blood cells, we have watched as her body has become weaker. In response to not having enough blood to take oxygen around her whole body, her feet and hands have become colder, and her little heart has been having to pump pretty gosh darn hard in order to keep things moving along effectively. Because of all that extra work, it has made her tired in a way that is beyond tiredness. (And grumpier in a way that is BEYONDDDD grumpy – but we’ll choose to skip over that little “less-than-angelic” detail for now…)
In spite of the very very frustrating methodical approach her doctors have taken to figure out the problem, they have indeed been VERY good at trying to locate the reason why Kendall’s blood counts have taken such a hit. I realize that what I have been spewing out here and there on Facebook were quick versions of my frustration – but overall, the big game plan was always to find the reason and THEN transfuse if she needed it. i have not necessarily agreed with how LONG it took to get to this point. But the steps required to get here were necessary. After nearly melting down and in fact breaking down on the phone to my dear friend/2nd mommy to my big girls, and then to my own real mommy, I was able to somehow (by the grace of God and all your prayers for me and the pygmies) pull it together enough to write out my 19 questions for the baby doctors on rounds, and then calmly present them. An awesome mom of a beautiful mito angel was able to reach out and help calm me down, talk me through the issues, and share the knowledge that she has gained on this crazy weird journey of the medically challenging complex child. And then i spent a lot of time last nite watching it snow, looking at the clock at realizing it was after midnite, and that good things happen on snow days. It’s true. I couldn’t sleep very well, and so Jesus and I just had some hang out time. I told him how pissed off I was, and he said “that’s cool. But I got this. I always got this. Don’t you forget it.” (and in case you’re thinking that I’ve been stuck in a hospital room living off coffees and oreos for just a tweed bit too long – you’re right. But we really did have a chit-chat, Jesus and me.)
And he sure enough indeed DID have this.
Doctors came to rounds ready to all pitch in and help pinpoint exactly what we could do to get Kendall better, and then get her ready to go home, and hopefully stay the heck away from this place for a good long while! Just about every single one of my questions was answered within the first three minutes of rounds, without me having to even ask the questions. Our attending doc (the main dude calling the shots for Kendall while she’s inpatient – it changes every two weeks, so we had a different attending when we were here last week) was so very on top of all of my concerns already. He is so quick to explain everything, but also to listen (and HEAR) my concerns and questions. Anyways – the outcome was that Hematology would be paged to consult today ASAP so we could get her transfused. It became not a question of if but when. The meds they had started last nite to try to compensate for the nutritional deficiencies they thought she was having were discontinued until we have further evidence that that is the problem. All of her antibiotics and antifungals were discontinued also! This is a HUGE help for going home because that med schedule was getting CRAZY to try to handle on my own! The only kinda bummer part about rounds is that they ARE going to need to go forward with the scopes for kendall, but those can’t happen until Monday or more likely Tuesday. We are trying to coordinate with surgery to have Kendall’s port replaced at the same time (assuming her blood counts respond nicely to the transfusions), since her PICC line is being less than helpful this week!
So – a lot going on. Even for a Saturday.
Very life-giving to my very frustrated, very exhausted, very stressed out soul.
but I think the biggest heart swelling moment I had today, was when our nurse came in all gowned up, with the charge nurse right behind, and performed the “ceremony” necessary to begin a blood transfusion. They check and double check and triple check every component of that bag with Kendall’s bracelets/numbers/info. it was kind of like watching… i don’t even know. Just a ceremonial ritual. And I realized that someone, somewhere, with A negative blood, had taken a few hours of their day a few weeks ago, to give blood. That person could be walking around this hospital or they could have been at the mall eating Panda Express orange chicken. And that those few hours of sacrifice would mean that my baby could get some energy back, get some life back to her. I mean, I know this. I have been a very faithful blood and plasma donor in the past. I am on the National Marrow Registry and have actually been called to be a donor for a patient who has thus far remained in remission (but they still call and keep tabs on me every once in a while to make sure I would still donate if things changed.) I am not trying to turn this into a PSA for giving blood.
I am simply saying –
It’s an amazing thing to witness. The giving of blood from one human being to another. The giving of life.
Within one hour of the infusion starting, I got a little panicky because I noticed Kendall looking reddish on her face. They went over “reactions” with me, and a “weird rash” was one of the top signs to watch for. I bent down to look at her at eye level (she was in her little red car that we push her around in in the hospital), and I realized it was not a rash – it was color coming back to her skin. She has been such a pasty shade of greyish chalk-colored blah that the oxygenated blood circulating through her body was making her glow pink again! I had tears in my eyes for just a second. Praising God that all things really had worked together on this “snowy day”.
I don’t know why I doubt it sometimes.
Thank you donors everywhere. Because of you – my baby is actually finally resting tonite. And by tomorrow, she’ll be pink again.
Life-giving to the max.
Terra & Kendall