For some reason, I wandered into a random isle at the Home Depot, while there to pick up a new lighting fixture for our kitchen remodel. This was a few weeks ago. I saw a shelf of wall decals, and picked up this calendar, thinking the color and style would match my decor. I didn't really have a need for it, or a spot to stick it, but I liked it, so I bought it.
For some reason, 1 night last week, I opened the sleeve and carried the sticky calendar around the house, holding it up in spots trying to find a location to put it. I had no idea what I was going to write on it, but everyone needs a calendar, right? I haven't used a paper calendar in months, ever since Toby's vomiting has decreased. All of my appointments and reminders are in my phone, so the one I had been using is stuffed under papers in my kitchen junk drawer, I presume.
For some reason, I chose to stick this calendar directly outside my son's bedroom, on the hallway wall. There is sat, with the word May on it, and nothing else. With no plans for any other content. I liked the way it looked.
For some reason, I asked to stay longer. This week, Toby's has been through hell and back. They gave us a choice to leave the hospital on Tuesday night, or stay for observation until we were comfortable. I chose the latter, for some reason, even though I had no sleep and had to put back on my dirty clothes from Sunday, as I hadn't brought enough with me. Wednesday morning we were greeted by the rounding team, who had new news for us. Some of Toby's labs had come back with major abnormalities. They were anxious to share with us this news, and a game plan to start regulating his system.
His labs had shown that Toby was not producing an adequate amount of Human Growth Hormone. This hormone is produced by the pituitary gland in the brain, and raises the levels of glucose in the body, as well as stimulating growth and reproduction of cells in our bodies. While undergoing his stress testing, on three different occasions when his GH levels should have been high, they were way to low. When they should have been increasing to help his body carry glucose and distribute in during his low periods, it was dropping instead of rising. He has been diagnosed with HGD - Human Growth Hormone Deficiency. In addition, his stay concluded that Toby is hypoglycemic - his Third Diagnosis. Hypoglycemia is the opposite of Diabetes. While a diabetic has too much glucose in the body, and needs to take shots of Insulin to carry it away and store it, Toby has too little glucose in his body, his organs not working right to take it from it's stores and drive it to where it needs to go. His HGH deficiency may be the reason Toby is hypoglycemic, or, worst case scenario, a Fourth Diagnosis, looming in the background, could be the primary factor of his confused body, actually causing the deficiency and hypoglycemia.
This is where the genetic testing comes in, for syndromes that have symptoms of HGD and Hypoglycemia, as well a multitude of other internal and external signs that Toby exudes. Only time will tell, as our first genetic test will take 2 months to get the results. And that is just the first.
For some reason, we chose to stay, and by doing that, we were at the hospital when these results came in, and we were able to give Toby a safe amount of growth hormone to leave the hospital. Had we have not stayed, we would have had to go back.
Big Changes
These two new diagnosis bring with them big changes for our family. Every night, until Toby is 18, we have to give him an injection of HGH. Every night, 3 times a night, I have to prick his finger and test his glucose level to make sure he is not too low, requiring an intervention of juice. This is a big adjustment - I just learned what the word glucose meant 7 days ago, and now I'm having to give my 2 year old shots and finger pricks to regulate it every night.
This - needles hopefully lasting me a month of testing. My trips to the pharmacy for Toby's Celiac medication, now $200 visits for testing supplies and glucagon pens - in case of emergencies.
This - a calendar I had no use for right outside his bedroom door, now exists as a quick way for me to document his results everyday. A guide on when I should rotate his injection sites, making sure not to repeat the same spot so scar tissue doesn't develop.
This - All of the extra icing, a stash for diaper bags, grandmas and babysitters, for scary times when Toby is too low and needs a quick shot of sugar.
This - Old formula containers from Lyla's food, now Sharps containers instead of pretzel containers.
My son smiles, even though every finger is dotted with tiny red dots. Bloody reminders of the bloody hell he's been through. Each arm, hand, wrist, thigh, foot - speckled with small scabs, band aids marking each boo boo he has, holding them out for "isses" to make them feel better.
We are working through these changes, slowly. Last night, Parker left to go out of town, again. Why doesn't he just quit his job and find something at home? Can't he find something equivalent here? Because he carries our insurance, and for us to switch now would be a HUGE cost. By the first of May, we've already met our $4000 out of pocket max for the year. We can't switch now, especially after the HGH has been prescribed - a daunting task for the insurance coordinators to work out, as its often not covered without a strenuous process.
I was on my own for the first night, and it went surprisingly well. Before he went to bed, I had to stick his finger twice, not getting enough blood with the first squeeze and erroring out the machine. Damnit. My 2am alarm went off, and I quietly snuck into his bedroom for a reading. Using his buzz lightyear flashlight we keep in his crib everynight, for some reason. He awoke only after the worse was done, and rolled back over after a few whimpers. I stayed awake for 2 more hours, my mind not turning off. We were lucky enough to still be at the hospital when I had to give my first HG injection, squeezing his tiny leg and puncturing his thigh. Screams and squirming as Dad held him down. The jury is still out for how tonight will go.
For some reason I was compelled to write. And for some reason a stranger felt compelled to comfort me. That opened my eyes to a new possibility, that lead to a new appointment, and 2 brand new diagnoses. They could possibly save my son's life.
How you could not believe in GOD after all of this, I'm not sure.
Thank you for listening,
Lindsey
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