It’s Too Many Things Day

Today, May 8, has a variety of holidays to choose from. While you may take your pick from the following list: Birth Mother’s Day, International Migratory Bird Day, Iris Day, No Socks Day, V-E Day, and World Red Cross Day, I’m going to play “eeny-meeny-miney-mo” to figure out what I’m going to write about.

I choose Wildflower Week. The second week of May is always Wildflower Week. Wait. What? It’s the second week of May already? When did that happen? I am absolutely overwhelmed by this thought. Honestly, though, what doesn’t overwhelm me these days?

I’ve been spending a lot of my “free time” sleeping. Yesterday I took a nap before bedtime. I woke up long enough to eat, watch “The Blind Side” (which was okay), and hook Ben up to his IV nutrition. That event was an exercise in comedy… I’ll come back to that.

That last round of chemo for Ben really knocked him out and made him extremely sick. He ended up back in the hospital just three days after discharge with horrendous mucousitis. He wouldn’t eat or drink because of the pain involved with swallowing. He wouldn’t even swallow his saliva so, of course, food was completely out of the question. His tongue looked like someone took a cheese grater to it. I know, that’s a terrible image, but just think how my poor son felt.

Ben was discharged after eight long days of being inpatient. He lost four pounds, which for those of you who know him understand that he doesn’t have four pounds to give, so the docs decided to put him back on TPN. TPN is a bag of liquid nutrition that goes through his port. It’s very high in calories, which will hopefully boost Ben past the 41 pounds he’s currently carrying. Mind you, he’ll be nine years old next month. The “charts” say he should weigh an average of 61.6 pounds. That’s a 20 pound difference.  This breaks my heart.

So, anyway, Ben was on IV nutrition for nearly all 15 months of his first round of therapy since he was constantly plagued with mouth sores. I became a pro at administering his nightly nutrition. I had to do a lot of his care at home during his initial diagnosis: shots, medication, TPN – I was as close to being a nurse as I’ll ever be. So when they told us that Ben would be sent home on IV nutrition I figured all I would need is a quick refresher course on how to hook him up. Our home care supplier sent us a huge box of tubing and syringes and batteries and saline and medications… enough to fill the Jersey shoreline. The box weighed more than Ben, which I found slightly amusing. A nurse came by a couple of hours later to give me a refresher on how to hook Ben up. I followed her instructions as the memories came flooding back from 2004. She told me that I was a “rockstar” and felt confident in my abilities to connect him. I was – in a strange way – proud of myself for remembering how to do it.

The first two nights went without incident. Then, last night, I whizzed through the set up process and attached the tubing to Ben. He put on the heavy backpack containing his pump and the bag of nutrition and went downstairs to eat some ice cream. Then I heard Matt call my name. I was cleaning up the carnage left by the many components of Ben’s TPN, so I said “Just a minute”, to which Matt responded “No, NOW!”. I ran downstairs to see a slightly freaking out Ben and an exasperated Matt holding up the tubing that was filling with blood. My mind started racing “oh no, oh no, oh no… what do I do?” So I clamped his line, pulled off the tubing, and tried to retrace my steps. Matt helped me push the blood out of the line. I reconnected the tubing to the pump exactly the same way as I did before. And, for whatever reason, it was fine. Who knows why it didn’t want to work before? I guess I just needed a dose of adrenaline? All it did was exhaust me more.

I listened out for Ben’s pump all night long. I was so paranoid that I wouldn’t hear it and had nightmares of blood backing up in his tubing. It was a long night.

Currently, Ben and his sister are hanging out together, starting in on their daily ritual of annoying the hooey out of each other. Ben’s mouth is much better. His ANC was over 2,500 at yesterday’s clinic appointment, so his mouth should finish healing in the next couple of days. Just in time for us to go to New York for scans and procedures. This visit will only be a couple of days. Then we’ll come back to Denver to do a cycle of shots in preparation for antibody therapy. Then we’ll be starting the last phase of this ridiculous journey. And hopefully getting on with our lives.

I’m finally seeing a light at the end of this horrific tunnel. I’m finding comfort in the hope that the doctors are giving us. I’m beginning to believe that Ben is going to be a long-term-on-this-earth kiddo. Unfortunately, I’m having a hard time convincing Ben of this fact. He is still so afraid that he is going to die. I’m searching for ways to parent this – it’s really not in any handbook out there – so I’m just muddling through the best I can. Reassuring him that there’s hope. That he might feel small and weak but he is so incredibly strong.

When I truly think about it, he’s like a fairy slipper orchid. When I lived in Summit County, I would pull out my hiking boots as soon as the weather permitted. One of my favorite trails was to Lily Pad Lake. There were sections of the trail that would remain snow clogged for a long time because it was shrouded by dense forest. And despite the fact that this trail was normally very busy (it was a fairly easy hike and culminated in a view of a large lake with a giant beaver dam = great reward with minimal effort) I loved it because it afforded me a look at the elusive fairy slipper orchid. This tiny beauty was capable of bursting through the lingering crust of last winter’s snow. I have no idea how it found the strength to overcome such insurmountable odds, but it always did. I knew that spring was truly coming whenever I caught that first glimpse of the fairy slipper’s purple crown, defiantly defeating its frozen captor. My body would tingle in delight as I marveled at the beauty of it. And as I dared my eyes to take in a little bit more of the frozen landscape, I would see many more tiny purple heads sprouting through the encrusted surface. Amazing. Life breaking free. Growing despite the less than ideal conditions. Enduring against all odds. Unstoppable. Supported only by its fragile base, crowned in its amazing glory.

I always wondered what made me stop to see that first fairy slipper orchid? When most people are trudging up the trail, precariously teetering between the snow pack and the pools of mud, eyes only on the end result of getting to the lake. What made me stop and see those miniature flowers on the ground? And what made me come back year after year in search of this tiny miracle of nature?

Now I know.

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  1. Your story is amazing. My daugher is on TPN for a different reason but I have had a few nights like you had in the past. There is tubing for TPN or a part that you can add that has a back flow check valve on it so blood cannot flow up the line. We have also heard of this happening at the beginning of the infusion because the pump is ramping up and not pumping has hard as the heart.

    Good luck and I hope you have more quiet pump nights.


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