Bruce is a trooper. He is a day shy of 15 months and I am wondering when in the world I became mother of a 15 month old....time may not have flown so much for me but I am still simply amazed I have been blessed with him. God is good. Trying, but good.
The last thirty days have brought three stays in Children's Mercy for Bruce. When he was born, he had some major heart issues but with treatment for his Pompe disease, those heart issues were eradicated. Or so we thought. His heart has an extra pathway for the electric currents to jump and start beating super fast. Like 270+ beats per minute fast. Anything can start a SVT episode for those who have the ability but for Bruce, it's vomiting. Fortunately, it's not something he does daily but he is a baby in the middle of teething and has a primarily liquid diet through a g-tube. Unfortunately, we cannot stop them with the tricks most people can and it generally takes high doses of medication only bigger hospitals keep in stock.
This last month when Bruce has had a SVT episode it is always at night and generally a weekend day...because nothing exciting happens on a Monday morning; it's Finagle's Law of Dynamic Negatives.
SVT #1 :: Started on Friday the 13th and ended up with life flight ride #2 out of our local hospital. We were lucky to catch it but when I had my hand under Bruce's arm to hold him on my lap to clean him up, I felt the rapid beats and instantly knew what we were dealing with. The trouble was, we were 30 minutes from a county hospital and 90 minutes from Children's Mercy. We stopped at our local hospital, they did everything they could but they did not have the next level of meds available so a chopper was called and little man flew away in the night. Because of the lay of the land and direction we traveled in, I was able to watch the flickering lights of the chopper for 30 miles....green flicker red, green flicker red. Nerve-racking, humbling, exhausting all wrapped up in one long experience.
As soon as they landed and when his favorite PICU doc put the stethoscope on him, he converted and spent the rest of the time flirting before we arrived. His medicine was adjusted and they sent us home that Sunday.
SVT #2 :: Not nearly as exciting except we bypassed our local hospital and drove straight to CMH. The only time ever I nearly passed out from John's driving but he did good to get us there quickly and safely and again, meds were adjusted and they sent us home after a couple days.
SVT #3 :: This time, not so quickly. Thursday night when Bruce started vomiting, I started panicking. I knew what was coming and I think I was getting more pissed off than anything. Certainly not with Bruce but with the situation, his medicine should be covering this. I quickly checked myself before I wrecked myself and away we drove after he started his episode. However, not after we tried all the vagal maneuvers they taught us : ice pack to the face, inverting and a quick cold shock shower. All to no prevail so we were southbound and down.
When we got to the ER they took us right back and John and I started in on our routine - we told them everything they needed to know about Bruce, what meds worked for him, what didn't, a quick history and after they checked it out in the computer records, he was able to convert back to normal heart rate in less than 15 minutes after we arrived in the ER. That's a record and John and I felt like super advocates for Bruce. Rather than have to go through the normal routine they do for SVTs, they were able to get down to business. Momma likes. We got to the floor early the next morning, slept a bit and started in on a new plan with a new medicine. Momma really likes.
But, this medicine takes time and close observation and an extended stay. Discharge is nearing and I'll get some time at home to do a load of laundry or six and get packed up to come back to Children's for this weeks round of as scheduled appointments and infusion.
And I do it all with a smile because who can resist this face.....
"ROOOAR"...means 'I love you' in dinosaur....
Boy's first haircut......that grin. Oh my.
And now for the statement. Living in the country is amazing. It's home for me. I am at peace. I wake up and every day I feel like I am vacation when I look out and I see nothing but rolling hills and prairie and trees and my neighbors are cows. And the way the sunlight hits the hills in the morning and EVERY sunset at night? I can't even put in words. It's glorious.
It's also 118 miles one way to Children's Mercy and when we average over 10 appointments a month and have three unexpected stays in thirty days, it's exhausting. And frightening. And just plain silliness nonsense. So, Bruce and I are moving FROM a four bedroom, two living room, giant kitchen house with original hardwood floors and wood trim with a full basement, new deck and did I mention giant kitchen TO a one bedroom apartment. But, it does have a garage. And it's only 17 miles from CMH. Smart, indeed.
I may sound a little resistant but really I am excited for the new adventure. The new place is actually really nice, great amenities and probably just as big as my house with exception the lay out is much different. I'm already planning quirky little DIY designs and have a new sleeper couch picked out for guests, mainly aunt Kacie when she comes to town :) And of course, margarita nights because I am only a few miles from a few ladies whom I know will join me in my quest to properly utilize all the citrus fruit in my life.
John and I are the best advocates for Bruce, with exception of a couple key players at CMH, and absolutely determined to make the decisions for our son. We are partners when it comes to Bruce and friends when it comes to us. Stress and pressure has taken its toll on our relationship but there is no one else in this world I would want to make parental decisions for Bruce with. Some days, I think John feels the same.
My brother is home from deployment #2 in Afghanistan. It's a chest-swelling feeling of relief and fear and pride and bittersweet sadness because he still has 2 years, 1 month before he is out of the Marines. I have never wished time to go by so quickly in my life. I love you, brother. You are MY hero....you and your handsome nephew.
Until next time, my friends.
x
