Today has been…crazy. The highs. The lows. A truly wild ride. Something of a rollercoaster. Yeah. That’s my day and it’s only three in the afternoon.
See, this morning started with Super Doubles. For a couponer, it’s my version of the Olympics. I have been busily and strategically planning for this since the rumors began a week ago. In the past year and a half, I’ve discovered it’s more of a marathon than a sprint. I woke at five and laced up my sneakers. Just kidding. I wore flip flops. And yesterday’s outfit. Don’t judge. I showered after the grocery store. I had to take Kenna with me. Luckily, she woke on her own. So I gave her the first of her three daily doses of Viagra for her heart condition, dressed her, passed her a granola bar and we were on our way.
As sometimes happens, the store was understaffed and I returned from my wildly successful shopping trip a lot later than expected due to understaffing at the checkout. I put away as much as I could, then rushed to shower. It had been a morning of rushing…until 9:45am when we arrived at the pediatric cardiologist. Then it was all about waiting. Really, it almost felt good to wait, to sit, to breathe, to slow down.
Kenna and I sat at the teeny tiny toddler table to color. Sadly, I wasn’t uncomfortable. After all, at five feet tall, I’m fun sized. Then we were ushered back to be weighed and measured. Kenna is now a whopping 37.5 inches tall and weighs roughly 27lbs. She’s huge…compared to where she started. She now only weighs 5lbs less than her two year old nephew. We’ll call it progress.
Oh, and there was even more progress. She held it together for the arm hug. You may know it as a blood pressure check. Kenna didn’t even whimper when they checked her O2 saturation forever…first on her forefinger, then her thumb, and finally found a new sat monitor to get an accurate reading. She lost it a little over the EKG. Who can blame her? Shoot, she even managed to survive the Echo with barely a whimper. This was HUGE. Last time I had to sit on the table with her and pin her down.
We always see the doctor twice, before and after the Echo. This time was no different. Ah, but the wait was. In fact, he was so far behind, we had to get moved back into another exam room until he could come speak with us. This part never scares me, never bothers me. This doctor and his staff are like family. The ultrasound tech and the doctor have been taking care of Kenna since she was in the NICU. We go way back. Four years of regular visits. Four years of watching her grow.
Up until now, it has always surprised me the way the doctor would marvel over her progress, her growth, her energy and abilities. Now, after our discussion, I have a better understanding of why. He came back in and wore the same serious face he always did after seeing the images and calculating the results.
doctor: Well, the pressure in her heart is essentially the same, roughly 60. We’d like to see the ratio to the other side at 50%, but it’s more like 2/3.
So I started asking him some of the questions that had been nagging at me.
me: Okay, well Kenna recently had an ABR, and because I’m a terrible mother, I forgot to give her the heart meds before the procedure and the anesthesiologist commented that studies had shown it didn’t work anyway. (I took a breath.) Should we consider trying some other medication? You had mentioned before there were other options.
The moment he took a breath before talking, I knew it wasn’t that simple.
Apparently, the other meds are intravenous and would require a pump. You can imagine how well Kenna would receive this. Most of all, before we could even consider using them, they’d need to do a heart catheterization, which means putting her under and running the cath up her leg. They don’t rush into these procedures, as you might imagine. So we have to wait to see if her heart gets worse before we cross that bridge. Even more, the heart cath will tell us if her heart would respond to the intravenous meds. If not, there’s nothing they can do.
me: So, Sam has been wondering if this is the kind of condition where she may need a heart transplant.
This breath may have been deeper than the last.
doctor: Well, she’d need a heart and lungs transplant. The survival rate is terrible.
I’m pretty sure a wrecking ball nailed me in the chest then. This was where I began struggling to process everything.
me: Lungs? But she only sees her pulmonologist once a year now. I thought they were all better.
Suffice to say, her O2 sats are awesome. Her lungs are great. It’s the arteries in her lungs causing the high pressures in her heart. This is why if her heart function decreases, a new heart won’t fix the problem. It all started with the lungs.
So what do we do? For now…nothing. We’re supposed to continue on, business as usual. Only now I understand why he watches her so closely. While I’ve always been a little protective where Kenna is concerned, I’ll now be watching her more closely too.
It’s hard. Already I find myself facing the same struggles as all the other mothers of medically fragile children. Life is always about finding the balance, but this balance is different. While the biggest part of parenting is always about keeping little ones safe, now it’s more so. My previous concerns are validated and I don’t feel good about it. I’ve always worried over her salt intake, her hydration, her sleep, getting overexcited or overexerting herself…now even more reason for my fears. Sure, it would be easy to let her have her way, to spoil the hell out of her, but it would be a huge disservice to everyone, Kenna included. Despite all the worries, we need to keep living, keep behaving like everything is normal. Sadly, this is our normal.
Ever since Kenna was born, I’ve lived in the present, never planning too far into the future. It seemed too precarious. After all, even her NICU release was delayed three times. While other families are already thinking about what their toddler may be when he or she grows up, we just want to see her grow up.
There are no predictions. The doctor can’t even guess. He told us her pressures may go down. They may get worse. Her heart may function fine despite them. This may just be her life. Or not. For the planner in me, the goal oriented highly driven woman I am, this is agonizing. We’ve always joked Kenna was here to teach me to slow down, to help me work on patience. Obviously, I’m still learning.
Sam: What does this mean for her quality of life? Of does this shorten her life altogether?
I understand his fears. It’s all the little things. While we live our life as a rollercoaster, there’s a distinct possibility Kenna may never be able to ride a real one. Our germaphobia has become a way of life. The fear that grips me when she sleeps through the night in her own bed may never go away.
doctor: Let her be a little wild child as long as she can handle.
This after Kenna has been running laps in the office and hopping from one colored square on the floor to the next. So I’ll resist my urge to stick her in a giant bubble to keep her safe. I’ll talk Sam through it and help him understand. When that doesn’t work, I’ll probably resort to cursing. Most of all, I’ll love Kenna through it, the only way I know to balance out the fear. We’ll hug her, kiss her, and cuddle her, grateful for every minute while hoping for many more.
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