not-so casual milestones (not for the needle-phobic)

I feel like I lean too heavily on the idea of medical impact on this blog. And then occasionally, I struggle with it.

Every kid, for example, goes through stressed out phases. Is mine different? No, said his preschool director. No, said his teachers, but (thoughtfully) most children don't have so much, um, medical excitement in their lives.

Well, no. But it's normal, all the same.

Normal, abnormal, typical, special - you got me. Picking it all apart it too hard, sometimes. Which is why we are a little in-your-face about refusing to separate these things. When the Eldest had a birthday, we celebrated. When he had his third port removed and transtioned from infusing his clotting factor into the nerveless port to the anxiety-ridden veins in his arms, well, it was a hell of a transition, so we threw one dickens (to borrow the child's terms) of a party.

A milestone is a milestone, right?

Okay, then. Try this one: the stressed out Eldest has been trying, lately, to control his world. He's failing with a certain regularity, but still, with the determination and grace that characterize so much of what he does, he's trying. His latest effort consists largely of telling his little brother what to do, an effort that inevitably infuriates them both.

Still, he persists. Reminded by his parents to play together (not on top of each other), that no! or NOOO! or NO! means that one person is directing instead of two people playing, that insert instructive variant here, the Eldest is trying to adapt, to grapple with this intended arrangement of his world, and to make it his own. That's our boy.

here is his attempt at combining control and teamwork. Seems to be effective, at least insofar as the block tower is concerned...

and it all came a'tumblin' down

But on to the milestone.

A few weeks ago, early into this delightful little phase, he told me that he wanted to learn to do his own infusions. I thought it over. He now has five reasonable veins, he's not afraid of needles, his hand-eye coordination is quite good...maybe. Maybe it could be done. I put him on the phone with one of his infusion nurses,* who encouraged him, praised his initiative, and then privately told me that the kid's veins are not, frankly, that good. Certainly they're famously unreliable. Why set him up for failure?

Two completely unrelated screaming fits later (by him, not me), I was perfectly willing to do so. Frankly, I was perfectly willing to do any number of things, most of which I was sure I'd regret later. This, at least, I could file under 'supportive parenting,' if in the subsection of 'vengeful.'

Today the Man was way out of town, visiting the fiercely recuperating MIL. It was also a factor day, a day when the Eldest was due for his next dose of clotting meds. However, this is now once more a two person job, as the Toddles tends to climb onto the dining table for a better view of the metal shiny pointy thing that Mama is using on his brother. Sigh.

So, I begged and a nurse turned up. We agreed: irrespective of who is giving the kid his factor, he wants to learn self infusion. Could the nurse do a training session? Certainly, they could. On me.

I'd started him off with bananas. I drew a branching vein on the latest victim, and handed it over. Solemnly, the Eldest reviewed the technique with the nurse:

The banana duly perforated and infused with tap water, they moved on. She showed him (with a capped needle) how to infuse himself:
I was to be perforated next, but the Eldest and his nurse took a break, while the Eldest got his factor. Putting the tourniquet on, the nurse noted that, after five long years, the Eldest had finally grown a decent vein or two. She cocked her head slightly, and asked, Would you like to give yourself factor, together with me?

She said it calmly, offering no pressure. The Eldest looked excited. Then nervous. Then determined. He cycled through these emotions, trying to understand this sea-change that was upon him. He showed the nurse how to tell from our treatment log which vein had been used most recently, and together they chose a vein. He held the needle, and...

He was so excited to see the blood return in the tubing that he forgot to take off the tourniquet. It was a good, solid stick - he got the entire syringe of factor into himself, the nurse assisted so subtly that it really was his show - and I sat there, gulping quietly.

Afterwards, he was quiet, almost matter-of-fact. I was quiet, too, trying hard not to burst into proud, sad tears. The nurse was a little disappointed in us both, trying to get excitement and delight out of a pair of rather overwhelmed people.

Quiet or not, it became obvious how excited the Eldest was when he went to poke me (an odd sort of triumphant lap, true, but hey - it's an odd disorder). The kid couldn't keep still, couldn't remember the order of 'clean, dry then poke,' almost couldn't hold it together long enough to wield the needle. But he did, in a triumph almost as significant as poking his own vein. And, mind you, the needle stick was nearly painless for me, which means that he did a good job.

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Bottom line?

Kid's going to be okay. Yah, he's making me want to screech right now, a lot. But who cares? (Beyond our neighbors, that is.) But he's five freakin' years old and he's learning to do an IV stick. Damn.

He's got the tools, the self-possession, the determination to be the person that he needs to be. He wants control? Fine, but we'll teach him flexibility to go with all of that tendency to be a human bulldozer. I'm calling it 'control with a plan B, C, D...zeta.'

God, I love that kid. I can't quite believe him, this strong, focussed little person. I just can't - quite - believe it. The joy that permeates these boys of ours, the strength, the focus...I just can't quite believe that it's true.

Look at the photos again. Do you see the focus? The intent look? Check again the last one - do you see the beginning of a smile? Tomorrow morning, that smile will have fully blossomed into joy. He will retell the story of his triumph to his father, his teachers, his classmates, and to several random people on the street. And why not? It's his story, his triumph.

Anyone can have tragedy, angst. It's joy that's hard.
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* infusion nurse: a nurse working in the hospital or for a company that is a subcontractor with a home care company/specialty pharmacy. The infusion nurses come and do in-the-home infusions (intravenous injections of medication, such as clotting factor, even chemotherapy), educate parents, train parents/patients in self-infusion. However, not all IV nursing companies specialize, or have enough patients to specialize in clotting disorders.

The infusion nurse can be critical in how your care is delivered. A home care nurse properly trained in the use of a port-a-cath, in bleeding disorders, will likely know more about the care of ports in folks with bleeding disorders than a HTC (Hemophilia Treatment Centre). Our HTC happily acknowledges this, and keeps close contact with the home care nursing team. The home care nurse will know the family dynamic, know the realities and necessities of the individual situation, and can be a wonderful advocate for you to the HTC and home care company.

Recently, I spoke to a nurse from my insurance company, who offered to be that advocate, given access to our treatment logs. This is not at all the same thing. Leaving aside the very large question of loyalties (with the patient vs the more sensible with the one who writes your paycheck? What you do depends a lot on the answer. D'you work for the insurance company, which pays for the patient's care, or the specialty pharmacy/home care company, who bills the insurance company? Both are cutting nursing costs, the first obviously and the second occasionally and quietly. An issue for another post, though.) A nurse who has seen the Eldest's veins bruise and stay bruised for weeks can advocate for a different treatment plan, based on a. that firsthand experience and b. her nursing degree/general clinical experience. If I didn't have a HTC that trusted me, I'd need my nurses more. As it is, while I was building that trust, I relied on them heavily. To keep me sane, that is.

Takes a village, don't'cha know.

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not to trivialize, but I served this for lunch, post-needles, and the Eldest loved it. So here it is:

Road to Independance Pasta Salad
serves 4-6 happy eaters

1 pkg pasta (Tinkyada pasta works for us!), cooked
2 fillets (1 pkg if buying Trader Joe's) smoked trout, sliced into strips
1 avocado, cut up into chunks
1 cup halved cherry tomatoes (more to taste)
4 sundried tomatoes (we use Trader Joe's), sliced into thin strips
4 smashed garlic cloves
1/3rd cup olive oil
2 Tb chopped dill, fresh
juice of 2 lemons
salt, pepper to taste
3-4 kaffir lime leaves

heat oil gently in a sauteeing pan, add garlic and saute until beginning to brown, over medium heat. Add sundried tomatoes and stir briefly, then remove from the heat. Let cool.

Combine all ingredients but the pasta in a large bowl. Mix gently. Add pasta, toss to combine. Serve!