My little Nathan is one big medical mystery. If I’ve said it once I’ve said it a thousand times, only God understands what is going on in his little body.
Last week one of Nathan’s specialists asked me if we had a family history of migraines and I before I could say “no” he quickly discounted his question by saying, “Well, Nathan is his own little family anyway.” That’s right. Nathan is genetically different from the rest of us. He is breaking all the rules of what your body is supposed to be doing and doing his own thing.
I’ve been secretly hoping to arrive at this place of understanding of all his body systems. He’s about to turn three and that has yet to happen.
In some ways we’re making progress. Remember all those screaming episodes that I went on and on about all last fall? Well, those have largely improved after we went to see the urologist in NY and discovered just how compromised his kidneys were and how painful it was every time Nathan tried to get rid of his waste product. The cathing has greatly improved those screaming fits.
Enter the new year, and along with it a new problem. Since January Nathan has been having new episodes of extreme lethargy, sometimes he becomes unconscious, and his heart rate goes up to 180 bpm. He’s had 14 of these in 2016 and we cannot figure out why. It’s not for a lack of trying. We’ve done two different EEGs to rule out seizure activity, one was a four-day long hospital admission that resulted in no episode during his stay. We’ve tried two different heart monitors to determine if he has some sort of conduction abnormality in his heart. We are still in the process of recording results for the 30 day heart monitor. We’ve also tried numerous GI tests like checking his blood sugars to see if he has Dumping syndrome and a couple of other med changes. So far nothing.
I’m tempted to say that I’m not as hopeful as I was six months ago. But I think the truth is that my hope is shifting. I’m not hopeful in the same things.
When Nathan was only a few months old I sat down to coffee with a fellow mom of a kidney kid. My pediatrician set us up. She started explaining that she catheterizes her child every three hours and I remember thinking, Thank goodness I don’t have to do that! I could never to that! I hope I don’t have to do that! Well…bahahaha! Fast forward two years and here I am cathing Nathan every three hours.
Cathing has become our norm. It’s not easy, especially if you’re out in public and the restroom isn’t at Nordstrom or Buc-ees (believe me I know). It’s not fair, especially if you’re the big brother and you’ve been waiting for your mom to play a board game with you or make you a snack. And it’s not a perfect fix. There are times Nathan wets his diaper before I get to him because, well, life. I tried to live with a timer going off on my phone every three hours, but it was just making me angry. I opted for imperfect over angry.
Cathing has greatly improved Nathan’s screaming fits. Well, now we are exploring the option of continuous feeds to improve Nathan’s episodes of lethargy/unconsciousness. Continuous feeds come with a whole new set of hassles and inconveniences.
Continuous feeds are commonly given to tube fed kids. What it means is exactly as it’s called, a feeding pump slowly pushes the formula into your stomach to prevent volume overload from a bolus feed. Continuously. As in all. day. long. The theory is that Nathan’s episodes of unconsciousness are triggered by too much volume of food in his stomach. Now we are spreading his caloric intake out over an 8 to 10 hour period.
Imagine being continuously fed food into your stomach all day, or all night, long. To me it sounds like force feeding–some strange kind of torture, yet I get the medical logic behind it. It might be the thing Nathan needs. We are going to trial adjusting Nathan’s feeds so that he’s getting less volume all at one time. He has to wear the feeding pump and formula in a backpack. This is what it looks like. He’s 23 lbs by the way. The backpack weighs approximately 2 pounds, 14 ounces (I weighed it) depending on how much formula is inside.
Hauling around an almost 3 pound feeding pump hasn’t slowed him down. He’s still crawling, pulling to stand, and annoying the heck out of his big brother. But he’s tired. And he’s burning lots of calories that we so desperately need to feed him. He’s also hiccupping a lot more than usual.
This was the deal we struck with the GI doctor and dietician. We’ll try it for one week. Seven days. No more. No less. We’re trying to reserve judgement for seven days.
The thing about my hope that is changing is this. I used to hope that we would be able to understand and treat all of Nathan’s different medical issues. I hoped that if we ran enough tests, got him on the right medications, and recalculated enough calories, that we’d figure him out. Now, I’m pretty hopeless to understand him.
This week I’ve been a little sad and weepy about that. It’s a loss of control that I’m grieving. And it hurts my heart for me to not be the one able to help my son more.
But my hope is shifting more towards God. I’m hopeful that He will give me the strength to care for Nathan in the best possible way. That He will wake me up refreshed enough to do it all over again–whether it’s cathing him every three hours or feeding him all day long. I’m at the end of thinking I have any control over preventing Nathan’s pain. Or, that I can keep him from passing out. I would love to be able to do that. Oh, how I would like to be in charge and have it my way.
The truth is my only hope is in Him. That’s how it’s always been. I just haven’t been paying attention or enjoying the benefits of that hope. The One who has never left me, or Nathan, through all of these medical set-backs and challenges, He is my hope. I have the cathing experience to look back on and see now that it is possible. I can go forward knowing I could do continuous feeding too.
Mac’s memory verse this week is Joshua 1:9. He’s was reciting it over and over again this morning. It’s true for him and it’s true for me.
Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” – Joshua 1:9
My husband ran into that same specialist who asked about the migraines this week over at the hospital cafeteria. He joked that Nathan’s middle name was “Enigma.”
I’m thinking of changing it.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
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