Tuesday Morning 12:41am.
We have been packaged up, tucked inside a neat ball, and have been catapulted in a sling shot to some far away place. I do not understand the language here, and nothing I've seen is familiar to me. I'm having a hard time comforting my son, because I don't know what to say to calm him, because no one knows what to say to calm me. Our journey so far, we've been traveling by bus. Peering out the window, shouting out the name, colors and shapes of things we know as we commute along. Making frequent stops to get out, and learn something new, in a new place. But this week, we've been rocketed into this strange land, and I'm having a very hard time finding my way back to something I can recognize.I sit by the glow of the computer, or the machines, I can't tell - and I have to type to get out my thoughts, because I can't sleep while they nag me. I know you're all worried with me, and I'll try update you as best I know how. To give my back a break from this concrete bed they have me sleeping on.
In my last entry I shared with you the results of our meeting with Genetics. We were excited to begin moving forward with genetic testing, something I feel will eventually, hopefully, lead us to some sort of treatable diagnosis for my son. I also shared with you his concern over Toby's Hypoglycemic episode as the result of fasting for his last colonoscopy. If you didn't read about it, you can find out what happened here:The story of his first hypoglycemic episode
I thought, we would re-board our bus, and make another stop in Endocrine to commence with the usual visit with the plebotomist - scream, poke, scream, siphon, scream, band aid, stomp away. But I received a call two days later, saying we needed to be admitted as soon as possible, as the Genetics doctor and the Endocrine doctor hashed out his case, they didn't feel we should wait. Sunday they said, be there at 4. Mother's Day. I had a day to change plans, find childcare for Lyla - who I haven't seen since Sunday Morning. My eyes now stinging, nose running while I type. I know she is safe and happy, but I miss her face.
These past few days have been challenging to say the least. Toby arrived blissfully unaware about what was about to commence.
I'll walk on my own, thank you very much
Sunday Evening was going well. Toby got comfortable in his room - books, trains, toys strewn about his crib. Bubble Guppies on repeat in the DVD player. All of the gluten free food he could ever want. I'm sure he maybe thought, for a brief moment, we were on a vacation. He was allowed to eat a meal (or a Toby size meal of 6 macaroni and cheese noodles) and drink a delicious, luxurious Vanilla Pediasure before bed.
And then, an abrupt halt to all of the niceties, as a nurse from the VAT (Vascular Access Team) arrived to start his IV. These glorious nurses run around the hospital sticking children who aren't easy. They have horrible jobs, and they are the best ever. I recognized the woman from when I worked here at CCHMC. I spent 8 years here (2002-2010), 5 in the emergency room and 3 in IT before leaving to broaden my horizons. I loved working here, and it's pretty evident most others do as well, seeing all of the familiar faces from the time we shared here. We briefly caught up as I explained to her the complexities of Toby's tiny vascular system - sharing with her the experiences from our journey, in hopes to avoid any undue pain. We made a game plan, and it was executed without any trouble - except for the screaming cries of pain from my son. Our line was in and we were settled for the night, being warned that a second line was imminent if they could not draw blood back out of the IV throughout the night.
He thought this lever to adjust the bed was a microphone, and kept talking into it like on his cash register at home. Hilarious.
And then, he slept.
Why are we here?
I'm sorry, I haven't even told you what we are doing here. I've been awake doing some reading, because most everything everyone has said to me has been noise. I can hear them speaking, but I can't focus on listening to the words they are saying, and I feel lost and confused when they leave, even though I've just told them I understand and have no questions. Weird, but unavoidable in times like these. Here is what I've read that made me understand what they were saying:Glucose is a simple sugar that provides energy to all of the cells in your body. The cells take in glucose from the blood and break it down for energy (some cells, like brain cells and red blood cells, rely solely on glucose for fuel). The glucose in the blood comes from the food that you eat.
When you eat food, glucose gets absorbed from your intestines and distributed by the bloodstream to all of the cells in your body. Your body tries to keep a constant supply of glucose for your cells by maintaining a constant glucose concentration in your blood -- otherwise, your cells would have more than enough glucose right after a meal and starve in between meals and overnight. So, when you have an oversupply of glucose, your body stores the excess in the liver and muscles by making glycogen, long chains of glucose. When glucose is in short supply, your body sends glucose from stored glycogen and/or stimulates you to eat food. The key is to maintain a constant blood-glucose level. To maintain a constant blood-glucose level, your body relies on two hormones produced in the pancreas that have opposite actions: insulin and glucagon.
Insulin and glucagon have opposite effects on liver and other tissues for controlling blood-glucose level. Insulin is made and secreted by cells in the pancreas. Insulin stores nutrients right after a meal by reducing the concentrations of glucose in the bloodstream. (Lindsey's version - Insulin is the carpool that stops at your organs after you eat, and swoops up, rations out, if you will, all of the leftover glucose that isn't absorbed, and takes it home)
So, what happens when you do not eat? In times of fasting, your pancreas releases glucagon so that your body can produce glucose. Glucagon is another protein hormone that is made and secreted by the pancreas. Glucagon acts on the same cells as insulin, but has the opposite effects. In contrast to insulin, glucagon transports glucose from stores inside your body and increases the concentrations of glucose in the bloodstream -- otherwise, your blood glucose would fall to dangerously low levels. (Lindsey's version - Glucagon is the carpool that picks up all of the glucose when their alarm goes off and they have to go to work for the day, transporting them and dropping them off at the work site.)
So how does your body know when to secrete glucagon or insulin? Normally, the levels of insulin and glucagon are counter-balanced in the bloodstream. For example, just after you eat a meal, your body is ready to receive the glucose absorbed from the food. The presence of these substances in the intestine stimulates the pancreas to release insulin into the blood and inhibit it from secreting glucagon. The levels of insulin in the blood begin to rise and act on cells (particularly liver, fat and muscle) to absorb the incoming molecules of glucose. This action of insulin prevents the blood-glucose concentration from substantially increasing in the bloodstream. (Lindsey's Version - Your body will know when to send the carpool to take the glucose home, so that all of the little guys aren't standing around making a mess, getting into trouble because they have no work to do). In this way, your body maintains a steady blood-glucose concentration in particular.
In contrast, when you are between meals or sleeping, your body is essentially starving. (Lindsey's Version - Uh, somebody better clock in here soon or you'lllllll be sorry)
Your cells need supplies of glucose from the blood in order to keep going. During these times, slight drops in blood-sugar levels stimulate glucagon secretion from the pancreas and inhibit insulin secretion.
(Lindsey's Version - The working bell dings and the Insulin carpool driver clocks out, while the Glucagon carpool driver clocks in and gets to work counting the heads of the little glucoses to make sure they're all aboard and ready to work)
Blood-glucagon levels rise. Glucagon acts on liver, muscle and kidney tissue to mobilize glucose from glycogen or to make glucose that gets released into the blood. This action prevents the blood-glucose concentration from falling drastically. This interplay between insulin and glucagon secretions throughout the day help to keep your blood-glucose concentration constant, staying at about 90 mg per 100 ml of blood .(Lindsey's Version - There is a constant highway of little glucose carpools going on in your body to make sure you don't crash).
Ok I know that was long, but there really wasn't a quick way to explain it. And it took me HOURS to dumb it down enough so I could understand it, so, hopefully, this cliff notes version will do. Now, back to the question, why are we here?
Toby's body has a hard time working out when to send which carpool - as seen and documented by his episode of having a blood glucose level of 17, when it should range between 80 and 100. Low levels of glucose can be a terrible thing - ranging from mild discomfort to full blown seizures, and even death. Because his last incident was so well documented in the system, the cause for concern that this could happen again was great enough that he had to be brought in for Glucose Challenge Testing. This is, as you can deduct, a way for them to medically supervise what happens to Toby's tiny body when its not acting the way it should. Meaning, his glucose levels fall dangerously low, and we can clearly see something in his insides aren't doing the job. The goal for this visit, is to find out WHY they aren't doing their job.
If we were in a classroom, now would be the time I would ask for questions. And also, I would have drawn pictures but it's too dark in here for me to see. Unfortunately, I have to hope I explained it well enough so that your head isn't spinning, as mine has been all week. (If it is, just read through that one more time, slowly, and hopefully that will do the trick. It seems to work for me that way).
And what happened next?
The challenge was to starve Toby's body of glucose (Ie. Fast him) to see if/how quickly the glucagon carpool picks up the workers and gets there where they need to be. His car has a history of flat tires, and mechanical breakdowns. We fasted from 9pm to Noonish before anything "concerning" started happening. He was down to 52, low, but not at the 45 mile marker he needed to be at to draw labs for the test.You know that IV we placed? Yeah, it stopped drawing blood by the wee hours of the morning, so we had to have another team come in with an ultrasound machine and start a line in his other arm that could provide us with his blood. It's really important the medical team has access to his veins because when the S*^% hits the fan, they have to work quickly to siphon what they need and then give him what HE needs to get better. This second IV was not as easy as the first, and I wont go into details but this was the only time so far (I'm not gone yet) in his stay where I felt like I wasn't being listened to. But I can't dwell on that and I have to forget about it or I will just be grumpy. I can fill you in later so I don't get in a fowl mood again.
After this line was placed in his arm, we all felt much better about access to Toby's bloodstream, and the day commenced as we watched his glucose levels fall. Now you can imagine after having been through what we went through already, to be told we have to do it again, on purpose, is a little alarming. But I was promised that they do this all the time, and that they wouldn't let his levels get anywhere near 17. Resources were always with us, the whole time. 45 was our target. Once he hit 45, they needed to confirm it with the lab, draw 5 tubes of blood to send off, and then we would pump him back up with fancy-schmancy-new-car carpools of glucagon to get this system back in order. Unfortunately, it didn't happen quite as direct as that.
The nurses and I had it down to a science. Every few hours we were Toby's unfortunate pit crew. Alarm goes off, vitals checked, finger stuck, IV's flushed, diaper changed, flipped, flopped and back in bed. If we would have made sounds, they would have sounded like the buzzes when the car in first place's tires are changed - warp speed. Levels had been normal most of the night and started drifting down in the morning. A mere 30 minutes after his 52 level at 1pm, he was at 31, just like that. The handheld device flashing, exclamation points in the system. Parker and I, shooting worried looks at each other. 31 is not so far from 17. We know what happens at 17. I don't want to go back to that place. Ever. Again. And just like that, a small swarm of staff, jumping up, gathering tubes and supplies, drawing some blood, and setting up a pile of tools on the table. Mom and Dad, worried by his bedside, running fingers through his sweaty hair as he lay miserable in the bed.
But, no one came running back in. And I started to panic. Because I kept thinking he was going back to that place I didn't want to see again, and I don't think I can take it. Our nurses, stopping back into say that they sent his sample to the lab, who have to confirm the level before they draw their critical labs, as sometimes these handheld devices aren't always accurate. They are sitting right outside my door when it happens, and his eyes roll into the back of his head, and I yell at my husband to go get them. I'm panicking and telling Toby to please stay awake, when they come running back, flipping on the bright lights, yanking him back into where he was, and the terror that he felt. With Toby crying and squirming, the nurses didn't wait to hear back confirmation, they just took the blood from one of Toby's IVs and injected his leg with a shot of glucagon. He's back in my arms, after a few minutes fighting, and retested at over 80. Exhausted from lack of sleep and lack of optimism, everyone, heads down.
Not out of the woods.....
I thought we were done. I thought we had been through the worst and we would get back up to our normal levels and be sent home, happy to lay in our own beds and see our slobbery baby girl. But it didn't work out that way. Toby's levels had been fine, as they were being checked at 5, 10, 20, 30 minutes after this incident. He got to drink a bottle, and I think that mixed with his energy shot had him bonkers - as he was running up and down the halls like mad man, disheveled hair blowing in the wind. We were visited by some old co-workers, and Toby was quick to impress them with his letter/number skills on the hallway keyboard.
We made a trip to the toddler room and made new friends to play with. All while waiting for our formal discharge.
After a while of no nap Toby, we thought it'd be best to try to lay him down. Before we got him down, he vomited, a common side effect from the medicine he was given. After a quick clean up, he didn't fight it, and laid down to rest.
Parker and I, shutting our eyes for just a few minutes when a knock at the door brought us back from dreamland and into the reality of where we were again. This was a nurse educator, explaining to us that we would have to start monitoring Toby's glucose levels at home, showing us our testing kit and supplies, and a myriad of numbers, and levels, and emergency shots. Slightly overwhelming, but I understand its for his safety.
It was right after this talk that we noticed something didn't look right in our sleeping son's face. His eyes half open and glazed, not usual for him. While we knew it wasn't right, we didn't freak out right away, we gently tried to stir him, thinking his eyes would pop open and he would roll over into normalcy. But, they didn't. And again our exchange of fear was evident. A little rougher, we shook him, and he did open his eyes, but not in the way I wanted. Not with the annoying leave-me-alone-I'm-sleeping look. This was one of unawareness, I wasn't even standing there. We called for the nurse and she came into check his level. Back in the 40s. She, running out to get juice, while I stopped and cried.
I hadn't cried this whole time - usually reserving it for a car ride by myself, or the shower. But I couldn't hold it in. All this time at home we've gone not checking his levels. All this time he could have been in danger. What would have happened? What would I have done if something had happened? What if that nurse hadn't have knocked on the door, and we all would have slept through.....????
Toby off in an unconscious dream, hopefully thinking about Thomas and Police Cars and Firetrucks. While I'm leaning over his cold bed rails, sobbing, that I can't protect my son. Sobbing because I'm tired and scared, confused and helpless. Sobbing because I knew we weren't going home now. Tears flowing at the thought of how much distress my boy is in, and how the thought of continuing this charade for much longer seems completely overwhelming. Parker rubbing my back and our son's legs, simultaneously, being a rock for both of us.
Because Toby was out of it, I had to inject grape juice in his mouth with a syringe and we convinced him to drink some pediasure, which helped bring him back from his too peaceful sleep. His levels were rechecked and back in the 80's and we all calmed down, and went for a walk. We stopped and got him an apple, and headed outside for a picnic and some fresh air.
Thank you for listening,
Lindsey
No comments:
Post a Comment