So, Adahlia’s 19th blood transfusion was last week. With so much going on, I simply haven’t had time to write about it. She went only 4 weeks this time between transfusions, which we expected, because she didn’t look as good sooner after the last one. (Part of that was due to teething.)
The long and short of it was that it was the BEST transfusion she’s ever had. To get the bad news out of the way, her reticulocyte count (baby RBCs) is still very low. It still hovers around 5, below normal, and well below its all-time high of 30+. I am not deterred, however. I still think we can beat this, and maybe, without needing steroids. I believe the counts will come back up.
The “good” news: One excellent IV stick – Hb of 7.3 – and we we got blood and left. We were in and out in about 7 hours, which is quick, believe it or not. Even better was that she fell asleep after the 15-minute vitals check after the transfusion began, and slept for about 2 of the 3-4 hours it takes to receive blood. When she awoke, we played with more toys, read more books, ate food, etc.
There was, actually, one thing that happened that could have been a major problem, but wasn’t. Shortly into her transfusion, the line came undone. I discovered it because I was lying with her on the bed, her arm over mine, the IV in her hand, and in the heart-stopping moment that she got up to peer through the divider at the kid in the next bay, I saw a spot of blood on my sleeve. And then on her leg. And then in the bed.
And then I realized she wasn’t attached to the line.
And that it had ended up under the organic blanket we brought from home, so her skin won’t be exposed to the harsh chemicals of the hospital linen, (she had a pretty rough skin reaction after her first 4-day stay in the hospital) and it was dropping slow little drips of blood onto the bed.
“Blood! Her line!” I said. Or something to that effect.
Joe jumped up to get the nurse while I switched the transfusion infusion to pause.
The nurse consulted with her boss, and they decided to clean the tip of the line with alcohol but to not flush and replace the line, because they didn’t think it was exposed very long and would likely not be contaminated, and really, well, they didn’t want to waste the blood. The bank had delivered exactly as much blood as she needed…
So the next day, when Adahlia spiked a 102 fever, I was a bit concerned. It went down though, to 99 by the late afternoon. She’s had a nasty cough since then, a night cough, but no further fever. After consulting with the nurse, we decided to just continue to keep watching it, as it is likely viral and will go away on its own.
And happily, yes, it does indeed, a week later, seem to be getting better.
Adahlia is amazing, wonderful, super, and more fantastic with every day that goes by. She can walk now, a tottering little walk with her arms held out like a cross between a tightrope walker and a t-Rex. She laughs a lot. Her favorite equipment at the playground is the see-saw. She was a lion for Halloween and so was I, and Joe dressed as a zookeeper.
…Fitting. 🙂
Adahlia loves the pumpkins we carved- a jack o lantern that she likes to point at, identifying his mouth, eyes, and nose. Our other carved pumpkin is of a Halloween cat, illuminated against a full moon. She points at it and says “cat” in sign language. In a few days, we will have to throw them out because they are starting to cave in and stink a bit. I’m actually considering getting a couple more and carving them for her.
Adahlia has molars coming in. Their ridges appear as beautiful little daggers pointing up from her pink gums.
Have you heard of Red Yarn? He is a local musician who sings children’s folk songs, does puppets… he is basically awesome. We took Adahlia to his CD release party and the concert was fantastic. I think it blew her away. She loves the music and now we play his CD all day long. When she wants to hear it, she grabs the CD cover and brings it to is, pointing at the stereo, and making earnest baby sounds. We turn it on, and she begins to sway and bounce.
… Sometimes, she insists we turn off the jazz station so she can hear her music. At any given moment of the day, I typically have a rotation of very catchy folk songs about animals stuck in my head. Luckily, they are fun songs. Frogs going courting, dogs named Blue, rabbits eating up gardens, and the like. The lyrics and instrumentation are really quite good. If they weren’t, it could be maddening. 🙂
Supplementing Adahlia with her vitamins, the ones she’s deficient in, has proved easier than it was at first. And I do notice improvements already. As I said, the majority of her deficiencies would qualify as antioxidants. She seems more relaxed, more energetic, more resilient, happier,
and she doesn’t pull and hit at her hair and head as much as she used to. Getting her nutrition optimized is part of my plan for helping her to kick DBA.
Oh I didn’t mention how amazing Adahlia was with the IV. She cried, yes, but as soon as it was in we sat her up, and as they were taping it down and flushing it with saline to make sure it would flow, I said:
“Adahlia, look, what is that? Is that water they are putting in your hand?”
And she immediately stopped crying, captivated, watching the “water” enter her hand.
… Amazing!
I also didn’t mention how she didn’t cry until we had positioned her on her back and were tying the tourniquet on her arm, and she knew the needle was coming… She didn’t cry as they as applied the warm compress to her hand and held it there to increase the size of her little veins… Nor did she cry when they put the tourniquet on the first time, to check for and find the best vein. And she didn’t cry at the end of the transfusion, when they removed the IV. She merely sat on my lap and watched them, very, very, closely.
And she made friends, during her transfusion, with the brother of a boy being treated for a brain tumor. She watched as we rolled a ball back and forth, laughing when he’d kick it or we’d head-butt it, and she even scooted forward and pushed the ball herself, after intercepting it.
… Amazing!
And for these reasons, and more…
(including how she waves at cars in parking lots, on the street, and everywhere we go, bringing smiles to the faces of strangers and friends alike)
… Adahlia is amazing!
Ps:
I want to thank those who read this blog to learn about Adahlia for putting up with the posts I write about myself. I do it because I’m pretty sure there’s a connection between our conditions, and because I don’t have a separate blog for myself, and because nearly every friend who asks about Adahlia also asks after my own health. People care. After all, I’m her mom and my health naturally impacts her health and happiness. My friends, of course, also simply want to know because they care about me, irrespective of anything else.
While there are always going to be naysayers, and folks who talk down or think the worst of others, there will also always be those eager to see the best and shining light in those they love.
So while every so often I do talk of my own journey, I hope you can see it is because Adahlia and I are still quite connected. And, if you are of the mind that we are all part of a universal consciousness, or one body in Christ, or whichever way you have of framing our interconnection of Spirit, then you understand.
I won’t go into the status of my own health right now, but I want to say that I’ve been guided to some phenomenal folks who’ve given me medicine, treatments, and wisdom I’ve incorporated into my own self healing practices, and the results have been phenomenal. I feel much, much, much better. In a couple days I will have more tests and we will know a bit more scientifically about what’s going in with me, and my trajectory, but for now, knowing only what I feel within me, I am grateful to know I am healing. The kidneys are the “deepest” organs and most difficult to treat in any medical tradition. And that is why any time they heal it is nothing short of miraculous.
Thank you to all who pray, send light, and love to Adahlia, myself, our little family, and to our entire, worldwide family.
We love you and are honored and glad to be here with you!