Continued from Part One...
Except that our night was far from “settled”. Of our three boys, T-Bear was the least likely to deal well with hospitalization. He was terrified of doctors, terrified of nurses, terrified of medical offices and hospitals, and had to be held down just to get his immunizations. For T-Bear, being in the hospital with needles being stuck into him and tubes coming out of him and people stabbing him every two hours was simply a nightmare. And, to top it off, they wouldn’t let him eat or drink, and he was starving and thirsting from the high BG. It was a very, very sad night. And, for the second night in a row, I didn’t sleep, spending hours and hours holding his hand and soothing him. I caught a few cat naps on the folding-down chair-that-wants-to-be-a-bed during those times when T-Bear drifted off to sleep due to sheer exhaustion.
On Day Two, I sent a brief (probably curt) mass e-mail to everyone in my address book explaining that T-Bear had been diagnosed with Type 1 Diabetes, and that I would be posting regular updates on our newly-established blog. The messages of sympathy and support were nearly overwhelming, and deeply, deeply appreciated. It was a blessing not to have to field a dozen phone calls, or send out e-mail updates and then feel pressured to respond to the individual messages. The blog turned out to be one of those nifty little gifts from the universe, perfectly timed to perfectly fill a need during a very difficult time. I’ve realized that it’s also a gift in that we now have a day-by-day, blow-by-blow, woman-on-the-scene record of those very significant and important days in our family’s history. And, if ever T-Bear asks, “What was it like when I was diagnosed?” we’ve got a record of his journey right there for him.
The Arnold Palmer Hospital for Children and the staff were fabulous. T-Bear was in a care suite set up with two beds (the other bed was empty) and a separate room for a more intensive care patient, and the shared nurse had her station in the suite. She was there, in the room, almost all of the time, taking care of her paperwork, phones calls, etc. right there, and only two patients to look after. Everyone we met was caring and understanding and supportive, and seemed to definitely know their business. It was another one of those blessings in disguise that we ended up there, and that we got a referral list that led us to our permanent Pediatric Endocrinologist, who we adore. If we’d been at home, we would have ended up with much different care, and probably would not have ended up with Dr. A and his wonderful staff, which would have been a tragedy.
T-Bear continued to respond well to treatment, though he really, really wanted to get out of there. It got a bit easier for him when the Child Life lady brought in an Xbox for him to play on (blessed distraction). We were brought a backpack from JDRF; T-Bear got his buddy, Rufus, and I got about 20 lb of information to sift through. Just the beginning of information overload. Papa Bear and I met with the Certified Diabetes Educator (CDE) for a run-down on diabetes and its management. In one of those moments that reminds me why I love him so much, Papa Bear asked the CDE if he couldn’t just give T-Bear half his pancreas so he wouldn’t have to take insulin every day for the rest of his life (the answer is “no”). Then, we met with the dietician for T-Bear’s meal plan and carb counting basics. That evening T-Bear was taken off the IV and was allowed to eat a meal, I did my first blood glucose test on T-Bear, and learned how to draw an insulin dose (thankfully, the nurse took care of the injection).
After an uneventful night, I took care of BG testing and insulin dosing, we hung out with some of the other kids in the play room, and managed to get released by mid-afternoon. Papa Bear, Brother Bear and BooBoo Bear brought T-Bear a bright orange flight suit and cap from Kennedy Space Center, along with a teddy bear dressed for a space walk. So, T-Bear made his exit from the hospital riding in a wheel chair, dressed in his astronaut suit, and cuddling three bears; Rufus The Bear With Diabetes, Space Bear, and Rock Bear (given to him by the ambulance crew during his transport from the ER to the hospital). It was pretty intimidating the amount of STUFF we were being sent home with, but being the Organization Queen that I am, I had it all sorted and ready to go. We managed to drop off, have filled, and pick up the first of MANY prescription orders for T-Bear so he would have syringes with which to inject insulin for dinner (I love Walgreens). And, after deciding against eating out for dinner (I almost choked when Papa Bear suggested it), we got pizza at our resort suite and had a quiet night. Except for the 2:00 am BG check.
The next day, we headed home. On the way out of town, juggling my cellphone, a bag full of D-stuff, and The Calendar In My Head, I managed to set up a follow-up appointment with Dr. A for later that week, and have T-Bear’s records transferred from the hospital to Dr. A’s office from the comfort of our truck (I LOVE technology). A ten-hour journey by car with a child newly diagnosed with diabetes, and a mom who was trying to be confident in her ability to take care of him. Totally screwed up the carb count at Subway for lunch; he was on R & N insulin at that time, so I was trying to match up a sandwich he would actually eat with the carbs allowed for lunch. But, of course, he survived my bungle (the first of many). And, I don’t think home ever looked so good as when we pulled in late that night.
So, I pretty much consider reaching home the end of our “diagnosis story”. Of course, it’s really not the end of the story, but just the beginning of this particular leg of our family’s journey. For anyone who would like to read about how this story unfolded for us day-by-day, here are the links as I posted them.
A Diagnosis May 14th
An Update May 14th
Another Update May 14th
Friday May 15th
Friday Evening May 15th
Heading Home - Saturday Morning May 16th
Saturday Evening - HOME! May 17th
Showing posts with label diagnosis. Show all posts
Showing posts with label diagnosis. Show all posts
Thursday, May 13, 2010
Wednesday, May 12, 2010
Rufus' Birthday
It’s been one year. Twelve months. Fifty-two weeks. 365 days. 1,825 finger pricks. 2,140 injections. As of tomorrow, it will have been one year since Rufus The Bear With Diabetes became a member of our family. And, as it so happens, just about a week since Rufus and T-Bear became full-fledged pumpers. Here’s their story.
We were on vacation in Orlando, Florida. Yep, on vacation. Our first “real live family vacation”, as Papa Bear put it. He had found a deal on a suite at a new resort property, we’d driven ten hours or so to get there, and had settled in to our little “home away from home”. Papa Bear had planned out the entire ten-day stint, and had very kindly scheduled in plenty of “down” time for all of us. One day at a “thing”, one day at the resort in the pool. Our rooms had a fully stocked kitchen, so I’d bought groceries and we were enjoying home-cooked meals in addition to frequent eating out at local restaurants. And, because I was on vacation and I could, I started a blog. This blog. The one you’re reading right now. Mostly on a whim, just because I had luscious free time on my hands and I could. Just to see what would happen. Because it seemed like the perfect way to share our “real live family vacation” with friends and family, pix and all, day by day. Great idea, huh? Well, it turned out to be an invaluable life-line during some of the most trying days of our family’s life.
Looking back at this picture, I see the tiredness in T-Bear’s eyes. He’s having a great time, he’s lovin’ the pool and being in a new place and all the great plans we have, but he’s just tired. And, he’d been tired for a couple of weeks. “Growth spurt,” I’d thought. “The onslaught of summer heat and humidity in The South,” I’d thought.
And, we seemed to make more than the usual pit stops on the drive down, because T-Bear had to pee so much, and that continued for our first few days in Orlando. “He’s drinking a lot of water because and it’s hotter here than at home, so, yeah, he’s gotta pee more,” I thought. I even captured a relief break on the way to Kennedy Space Center, because it was “out of the ordinary” enough it caught my attention. It wasn’t until later that I remembered he had wet the bed a couple of times in the week before we left, which NEVER happened.
And, he was thirsty all the time. He’d suck down his drink (usually milk), and be begging for my drink as well. Empty water bottles littered the floorboards of the truck after every outing. There were so many water bottles, BooBoo Bear made a costume out of the labels in the truck on the way to the Space Center. The Night Before, I remember thinking how odd it was that he got up in the middle of the night to get a drink of milk. “T-Bear never gets up in the middle of the night to drink milk at home,” I thought.
Then, he lost his appetite. At The Rainforest Café T-Bear ordered the kids’ Mac & Cheese, a big pile of Mac & Cheese, his favorite food on the entire planet, and he barely touched it. “He’s worn out from all the activity and excitement of the day,” I thought. And I had to escort him to the bathroom twice during dinner. “He really drank a lot today, probably from the heat and activity, no wonder he’s gotta pee so much,” I thought.
Then, he got sick. Really sick. Which never happens. His brothers and the rest of the family can be puking their guts out for hours on end, and T-Bear will throw up once and be done with it. The kid has an iron stomach. So, you’d think I’d be concerned when the kid who never pukes starts puking every hour on the hour. And then, every half hour. And then, every fifteen minutes. All night. But, I’d gotten used to the vomiting routine with BroBear’s Cyclical Vomiting Syndrome, so alarm bells didn’t go off. Until he’d been vomiting all night, and most of the morning, and showed no signs of letting up, no matter what I did. Papa Bear had taken the other two Cubs back to the Space Center that morning, and I called him to come home early. “I think we need to take T-Bear to the ER for IV fluids.” We’d been through this before with his brother. Just plump them up with some fluids, the vomiting stops, and bring ‘em back home to rest.
So, Papa Bear took T-Bear to the local ER while I stayed with his brothers. It must have been a really efficient ER, because within a couple of hours Papa called to tell me that T-Bear had Type 1 Diabetes. All I heard was “diabetes”, and my heart stopped. Diabetes. That’s the disease that kills you very slowly over time. The one where you go blind. The one where you have to chop off parts of your body because you stubbed your toe one day and it never healed and gangrene set in and the only way to prevent it eating up your entire leg was to chop off your entire foot and hope it heals, which it probably doesn’t, and it eventually kills you over a few months. That diabetes. In MY CHILD. I was horrified and terrified.
“They’re going to transfer him to the Children’s Hospital.” “Okay,” I manage to barely squeak because I couldn’t breathe. “I’ll call you when we get settled in.” “Okay,” I squeaked, gasping for breath. I’d gone into another room, away from the boys, and sat there for a few minutes, my hand clasped over my mouth so they wouldn’t hear my strangled sobs. I didn’t want to upset them. I didn’t know what to say to them.
Then, my logical brain kicked in. I grabbed my laptop, Googled “Type 1 Diabetes”, and gave myself a 30 minute crash course on this disease. And then, the soul-strangling guilt kicked in. The symptoms of onset. Every symptom. Right there. T-Bear had had every single symptom, and I didn’t realize this list of symptoms, everything that I had casually noted in my mommy brain but had dismissed as not important, was his little body screaming “Your child is dying.” And I didn’t hear it. I didn’t know. More strangled sobs so I don’t upset his brothers.
Then, my Emergency Mom brain kicked in. Pull yourself together, figure out what needs to be done, and do it. Fall apart later. Armed with my 30-minute crash course, I explained to BroBear and BooBoo Bear that their brother was sick, he was being taken to the hospital where doctors and nurses were going to take care of him, that he had an serious disease, but he was going to be okay. A few days in the hospital, then we’ll take him home.
Papa Bear came back that evening, completely exhausted. I’d already packed a few things, including my laptop, and was ready for my shift at the hospital. Driving there, T-Bear’s nurse called me to let me know the latest. “He’s resting, he’s looking better, he’s responding to treatment, he’s going to be okay.” That was the end of the day, May 13, 2009. I arrived at the hospital, found my little boy, and settled in for the night.
Part Two tomorrow…
We were on vacation in Orlando, Florida. Yep, on vacation. Our first “real live family vacation”, as Papa Bear put it. He had found a deal on a suite at a new resort property, we’d driven ten hours or so to get there, and had settled in to our little “home away from home”. Papa Bear had planned out the entire ten-day stint, and had very kindly scheduled in plenty of “down” time for all of us. One day at a “thing”, one day at the resort in the pool. Our rooms had a fully stocked kitchen, so I’d bought groceries and we were enjoying home-cooked meals in addition to frequent eating out at local restaurants. And, because I was on vacation and I could, I started a blog. This blog. The one you’re reading right now. Mostly on a whim, just because I had luscious free time on my hands and I could. Just to see what would happen. Because it seemed like the perfect way to share our “real live family vacation” with friends and family, pix and all, day by day. Great idea, huh? Well, it turned out to be an invaluable life-line during some of the most trying days of our family’s life.
Looking back at this picture, I see the tiredness in T-Bear’s eyes. He’s having a great time, he’s lovin’ the pool and being in a new place and all the great plans we have, but he’s just tired. And, he’d been tired for a couple of weeks. “Growth spurt,” I’d thought. “The onslaught of summer heat and humidity in The South,” I’d thought.
And, we seemed to make more than the usual pit stops on the drive down, because T-Bear had to pee so much, and that continued for our first few days in Orlando. “He’s drinking a lot of water because and it’s hotter here than at home, so, yeah, he’s gotta pee more,” I thought. I even captured a relief break on the way to Kennedy Space Center, because it was “out of the ordinary” enough it caught my attention. It wasn’t until later that I remembered he had wet the bed a couple of times in the week before we left, which NEVER happened.
And, he was thirsty all the time. He’d suck down his drink (usually milk), and be begging for my drink as well. Empty water bottles littered the floorboards of the truck after every outing. There were so many water bottles, BooBoo Bear made a costume out of the labels in the truck on the way to the Space Center. The Night Before, I remember thinking how odd it was that he got up in the middle of the night to get a drink of milk. “T-Bear never gets up in the middle of the night to drink milk at home,” I thought.
Then, he lost his appetite. At The Rainforest Café T-Bear ordered the kids’ Mac & Cheese, a big pile of Mac & Cheese, his favorite food on the entire planet, and he barely touched it. “He’s worn out from all the activity and excitement of the day,” I thought. And I had to escort him to the bathroom twice during dinner. “He really drank a lot today, probably from the heat and activity, no wonder he’s gotta pee so much,” I thought.
Then, he got sick. Really sick. Which never happens. His brothers and the rest of the family can be puking their guts out for hours on end, and T-Bear will throw up once and be done with it. The kid has an iron stomach. So, you’d think I’d be concerned when the kid who never pukes starts puking every hour on the hour. And then, every half hour. And then, every fifteen minutes. All night. But, I’d gotten used to the vomiting routine with BroBear’s Cyclical Vomiting Syndrome, so alarm bells didn’t go off. Until he’d been vomiting all night, and most of the morning, and showed no signs of letting up, no matter what I did. Papa Bear had taken the other two Cubs back to the Space Center that morning, and I called him to come home early. “I think we need to take T-Bear to the ER for IV fluids.” We’d been through this before with his brother. Just plump them up with some fluids, the vomiting stops, and bring ‘em back home to rest.
So, Papa Bear took T-Bear to the local ER while I stayed with his brothers. It must have been a really efficient ER, because within a couple of hours Papa called to tell me that T-Bear had Type 1 Diabetes. All I heard was “diabetes”, and my heart stopped. Diabetes. That’s the disease that kills you very slowly over time. The one where you go blind. The one where you have to chop off parts of your body because you stubbed your toe one day and it never healed and gangrene set in and the only way to prevent it eating up your entire leg was to chop off your entire foot and hope it heals, which it probably doesn’t, and it eventually kills you over a few months. That diabetes. In MY CHILD. I was horrified and terrified.
“They’re going to transfer him to the Children’s Hospital.” “Okay,” I manage to barely squeak because I couldn’t breathe. “I’ll call you when we get settled in.” “Okay,” I squeaked, gasping for breath. I’d gone into another room, away from the boys, and sat there for a few minutes, my hand clasped over my mouth so they wouldn’t hear my strangled sobs. I didn’t want to upset them. I didn’t know what to say to them.
Then, my logical brain kicked in. I grabbed my laptop, Googled “Type 1 Diabetes”, and gave myself a 30 minute crash course on this disease. And then, the soul-strangling guilt kicked in. The symptoms of onset. Every symptom. Right there. T-Bear had had every single symptom, and I didn’t realize this list of symptoms, everything that I had casually noted in my mommy brain but had dismissed as not important, was his little body screaming “Your child is dying.” And I didn’t hear it. I didn’t know. More strangled sobs so I don’t upset his brothers.
Then, my Emergency Mom brain kicked in. Pull yourself together, figure out what needs to be done, and do it. Fall apart later. Armed with my 30-minute crash course, I explained to BroBear and BooBoo Bear that their brother was sick, he was being taken to the hospital where doctors and nurses were going to take care of him, that he had an serious disease, but he was going to be okay. A few days in the hospital, then we’ll take him home.
Papa Bear came back that evening, completely exhausted. I’d already packed a few things, including my laptop, and was ready for my shift at the hospital. Driving there, T-Bear’s nurse called me to let me know the latest. “He’s resting, he’s looking better, he’s responding to treatment, he’s going to be okay.” That was the end of the day, May 13, 2009. I arrived at the hospital, found my little boy, and settled in for the night.
Part Two tomorrow…
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