We're 3 weeks into this now, but I still haven't totally wrapped my head around it. I guess it's the stages of "grief." I'm kind of in that 'denial' stage. Part of my brain is under the impression that this will all just go away, or the doctors will be like "oops! just kidding, he's not diabetic!"
But, I think, for the most part, my extremely (pathologically) logical portion of my brain has kicked into over drive. I find myself constantly researching and planning and asking a million questions. I just want to make sure we do this right. I want to make sure we give him the best shot at a completely normal life. I did hours of research on apps for tracking all his numbers, on backpacks/bags for carrying all his necessities, on pumps and recent research, on ways to raise money for finding a cure. We bought a brand new little tablet computer just for him; to download those apps I spent so much time researching, to keep track of everything possible, to manage this thing the best we can. I created a team to raise money for the local JDRF walk and already have multiple fundraising ideas in the works. Does this all make me extreme? Probably. Do I care? Nope! I want to set the example for Boogie, that we're not taking this thing lying down. We're taking control from day one!! (OK, that was a little extreme....got a little carried away with the motivational speaking...)
Since I mentioned it, I'll go ahead and take this opportunity to shamelessly plug our JDRF walk team and give you the link if you feel compelled to donate to the cause or come out and join us on walk day to show moral support!! Head on over to our team page here: "Tucker Tough" and click "Donate to this team" or "Join this team." We've got team t-shirts you can purchase here: "Tucker Tough" T-Shirts Super cute, right? :)
An update on Boogie: After changing his Lantus (24 hour insulin) dose down to 1 last week, his BG (blood glucose) numbers jumped really high. We tried giving it a few days to see if things would level out, but after 3 days of consistently being over 250, I called back and they changed his dose to 1.5. The only negative about this change is that the Lantus pen (yes, it looks just like a pen, it holds the insulin, you put a needle on the tip of it and that's how you give him the insulin) doesn't do half units like his Humalog (short acting insulin) pen does. So, this means we have to draw the insulin out of the pen with a syringe and give it to him from the syringe (an extra step and a much longer needle...ouch). On the positive, side, 1.5 seems to be a good number so far. We've had a few times he's crashed his BG down low, but he's staying in his target range on average. He's most likely still in that 'honeymoon' phase, so we'll see how long the 1.5 works for...
He's got a really bad cold right now; running nose and wet cough. My guess: lack of sleep! Waking up every night at midnight and 3am, sometimes having to be up for an hour at a time to get his BG levels stabilized....that will make anyone sick! Other than that, he's doing great! Same ornery, mile-a-minute two y/o he's always been!!
Tuesday, August 21, 2012
Monday, August 13, 2012
yay, for sleeping...
We had Boogie's two week follow up with his new endocrinologist this morning. I can't believe it's already been two weeks since his diagnosis! It's amazing how this has all just become part of normal life already!
The diabetes educator and the doctor both gave us rave reviews on how we are managing Boogie's care. They were very pleased to see we were monitoring his glucose (checking 8-10x/day) like we were told to and making sure he's eating well balanced meals. They were both almost shocked to see we were following doctor's orders? They both said things to the affect of 'you'd be surprised how many parents come in and don't have any glucose readings' saying things like "oh, yea, I think we checked it yesterday..." or "I'm often in shock as to what the parents say they're feeding their child." WHAT?!?! Who are these parents? I cannot wrap my head around this. A doctor has just told you that your child has a life long disease. A disease that if not managed carefully and correctly can be DEADLY and you just...don't care??!?! This angers me beyond belief. Yes, I'm a rule follower and, yes, I can be a little OCD and over the top about things, but when it comes to my child's health....my child's LIFE, can there be any other way??
[Stepping off my soap box...]
Overall, I was very pleased with our educator and Boogie's new endocrinologist, Dr. Musick. [we changed doctor's only so that we can go to Children's Mercy South and not have to drive downtown all the time]. She was very supportive and positive. She had a good rapport with Boogie and kept telling him how he can do/be anything he wants to be....well, except for a long haul truck driver or be in the army...but, anything else! She was pleased to see that his numbers were falling into a good pattern. She agreed that he was still in that "honeymoon" phase and thus, we've decreased his long-acting insulin to just 1 unit/day (down from 2 units/day). As long as things are looking good after a few days, we can stop doing the overnight glucose checks (midnight and 3am)! So, yay for sleeping again!! I think that will put us all in a better mood because us Hupps are grumps without our sleep! He's still jumping really high after breakfast so we've decreased that insulin ratio to 1/20. Other than that, everything looks great and we'll be back in 3 months!
Oh, and I'm pleased to report that C-Monk is crawling!! Yes, crawling, like up on hands and knees crawling!! It took her awhile, but she finally got there :) I guess it's on to walking next....yikes!!
The diabetes educator and the doctor both gave us rave reviews on how we are managing Boogie's care. They were very pleased to see we were monitoring his glucose (checking 8-10x/day) like we were told to and making sure he's eating well balanced meals. They were both almost shocked to see we were following doctor's orders? They both said things to the affect of 'you'd be surprised how many parents come in and don't have any glucose readings' saying things like "oh, yea, I think we checked it yesterday..." or "I'm often in shock as to what the parents say they're feeding their child." WHAT?!?! Who are these parents? I cannot wrap my head around this. A doctor has just told you that your child has a life long disease. A disease that if not managed carefully and correctly can be DEADLY and you just...don't care??!?! This angers me beyond belief. Yes, I'm a rule follower and, yes, I can be a little OCD and over the top about things, but when it comes to my child's health....my child's LIFE, can there be any other way??
[Stepping off my soap box...]
Overall, I was very pleased with our educator and Boogie's new endocrinologist, Dr. Musick. [we changed doctor's only so that we can go to Children's Mercy South and not have to drive downtown all the time]. She was very supportive and positive. She had a good rapport with Boogie and kept telling him how he can do/be anything he wants to be....well, except for a long haul truck driver or be in the army...but, anything else! She was pleased to see that his numbers were falling into a good pattern. She agreed that he was still in that "honeymoon" phase and thus, we've decreased his long-acting insulin to just 1 unit/day (down from 2 units/day). As long as things are looking good after a few days, we can stop doing the overnight glucose checks (midnight and 3am)! So, yay for sleeping again!! I think that will put us all in a better mood because us Hupps are grumps without our sleep! He's still jumping really high after breakfast so we've decreased that insulin ratio to 1/20. Other than that, everything looks great and we'll be back in 3 months!
Oh, and I'm pleased to report that C-Monk is crawling!! Yes, crawling, like up on hands and knees crawling!! It took her awhile, but she finally got there :) I guess it's on to walking next....yikes!!
Tuesday, August 7, 2012
snuggle...
This new adventure has come with a fabulous side effect....snuggle time!! In the hospital, Boogie and I spent a lot of time snuggling in bed watching movies and the Olympics. Never for a moment was I thankful he was in the hospital, but I was thoroughly enjoying the one-on-one downtime. Boogie has never really been a snuggler. Even as a newborn baby, he didn't like to be rocked, he just liked to be put into his bed and allowed to get to sleep on his own. He's a very loving kiddo and gives hugs and kisses and 5 minute snuggles all the time, but never anything like this. He's got way too much to do and explore to sit still for that long! But, one afternoon in the hospital we layed through an entire movie, just quiet and cuddled up!
I'm very excited to report that this new habit has followed us home. He loves to cuddle on the couch or cozy up in bed with me. As we lay there he says "lub you!" I think because I said it so much in the hospital, just laying there rubbing his back telling him again and again that I love him, he thinks that when you snuggle, you say "I love you." It melts my heart every time.
Due to our new schedule and routine, Boogie and I get regular snuggle time now. For the time being, we have to check his glucose levels two hours after every dose of insulin. So this means, he eats lunch and gets insulin (at around 11:45) and then we have to wait 2 hours and check his glucose (at around 1:45). For a long time now, Boogie has been taking his afternoon nap at around 1pm. Unfortunately, this is only about an hour after he gets his insulin. We've decided it would be better to keep him up for another 45 minutes than to put him down and have to wake him up to poke his finger. So, once C-Monk goes down for a nap around one, Boogie and I snuggle in bed for an hour/45 minutes every afternoon. We watch the Olympics or anything we can find interesting on Netflix, nuzzle into each other and say "lub you!" over and over. Best.Part.Of.My.Day!
I called into the Diabetes Clinic yesterday as instructed when we left the hospital. They wanted to see how things were going and what all his numbers were looking like. Truthfully, his numbers are all over the place. His glucose levels bounce around from 67-467 and back again. Which I'm told is normal for a newly diagnosed diabetic, especially one that's only 2 y/o. We were seeing a few trends such as always being really high after breakfast and always crashing down during the night. The doctor I talked to tried to explain these two phenomenons and also provide some ideas to correct them.
First, a possible reason why he's so high after breakfast is that because it has been so long since he's eaten (>12 hours) his body is trying to hang onto as much as possible, worried about when it might get to eat next. Makes sense. So we decided to change his insulin ratio for breakfast. An insulin ratio is the ratio of units of insulin needed to grams of CHO (Carbohydrates) consumed. In the hospital they assigned him an insulin ratio of 1/30, meaning for every 30 grams of CHO he consumes he needs 1 unit of insulin. So, because he's always been so high after breakfast, we changed this ratio (for breakfast only) to 1/25, hoping to get him an extra 0.5 units of insulin with breakfast. This will hopefully help to pull that extra glucose out of his blood stream and into his organs...or at least in theory....of course, that's not exactly how it went today....
In regards to his "crashing" at night, meaning his glucose levels drop drastically through the night, the doctor hypothesized that this may be due to Boogie's "honeymoon" period. In order to explain "honeymoon period" I'll need to give you a brief lesson in Type 1 Diabetes (T1D). T1D is an autoimmune disease with no known cause. It means that your body's defense system is attacking your own cells. In the case of T1D, it is attacking the beta cells (insulin producing cells) in your pancreas. Insulin is a hormone that acts as an air traffic controller of sorts, moving the glucose in your blood into the body's various cells to be used for energy and function. As these beta cells get destroyed, they in turn, loose their ability to create insulin. Without insulin, the glucose in your blood can't be moved into the cells, thus being left to build up in the blood stream. In newly diagnosed diabetics, it's common to still have some functioning beta cells. When synthetic insulin is introduced into the body, these remaining beta cells shut down and relax as they are not needed. Eventually, these beta cells will "wake up" for a period of time and begin functioning again. This is referred to as the "honeymoon period" and presents as sudden 'crashes' in blood glucose levels. Boogie's 'honeymoon' period may be occurring during the nighttime hours. While the rest of his body is at rest, these beta cells are kicking into gear again and producing insulin, and thus, in conjunction with the synthetic insulin we're giving him this causes extra glucose to be pulled out of his blood stream. This doesn't mean that he is cured! These last beta cells will eventually be destroyed as well, thus the term "honeymoon," it only lasts a short while. The temporary solution we decided on is to "carb up" before bed. This means giving him a 15g CHO snack before bed without dosing him with insulin. This will increase his blood glucose levels enough so that when he does drop down during the night, he won't fall into hypoglycemic levels.
Wow, I feel like I've completed the first edition of Rosetta Stone: Diabetes.....that was a brand new language I just spoke....
As to not make this all about Boogie, C-Monk is making strides of her own...literally. She can climb all the way up the stairs all by herself now. So, looks like it's time to put the gate up at the bottom again! She's also finally attempting the hands and knees crawl. For a couple months now, she's become a master of the army crawl and can move as fast as a cheetah. So, I think she's been a little lazy to attempt the hands and knees crawl since she can get everywhere she wants to already. But, over the last few days, there's been a few times she's pushed up and crawled like a person...
All right, life is calling....there's laundry to fold and dishes to wash...
I'm very excited to report that this new habit has followed us home. He loves to cuddle on the couch or cozy up in bed with me. As we lay there he says "lub you!" I think because I said it so much in the hospital, just laying there rubbing his back telling him again and again that I love him, he thinks that when you snuggle, you say "I love you." It melts my heart every time.
Due to our new schedule and routine, Boogie and I get regular snuggle time now. For the time being, we have to check his glucose levels two hours after every dose of insulin. So this means, he eats lunch and gets insulin (at around 11:45) and then we have to wait 2 hours and check his glucose (at around 1:45). For a long time now, Boogie has been taking his afternoon nap at around 1pm. Unfortunately, this is only about an hour after he gets his insulin. We've decided it would be better to keep him up for another 45 minutes than to put him down and have to wake him up to poke his finger. So, once C-Monk goes down for a nap around one, Boogie and I snuggle in bed for an hour/45 minutes every afternoon. We watch the Olympics or anything we can find interesting on Netflix, nuzzle into each other and say "lub you!" over and over. Best.Part.Of.My.Day!
I called into the Diabetes Clinic yesterday as instructed when we left the hospital. They wanted to see how things were going and what all his numbers were looking like. Truthfully, his numbers are all over the place. His glucose levels bounce around from 67-467 and back again. Which I'm told is normal for a newly diagnosed diabetic, especially one that's only 2 y/o. We were seeing a few trends such as always being really high after breakfast and always crashing down during the night. The doctor I talked to tried to explain these two phenomenons and also provide some ideas to correct them.
First, a possible reason why he's so high after breakfast is that because it has been so long since he's eaten (>12 hours) his body is trying to hang onto as much as possible, worried about when it might get to eat next. Makes sense. So we decided to change his insulin ratio for breakfast. An insulin ratio is the ratio of units of insulin needed to grams of CHO (Carbohydrates) consumed. In the hospital they assigned him an insulin ratio of 1/30, meaning for every 30 grams of CHO he consumes he needs 1 unit of insulin. So, because he's always been so high after breakfast, we changed this ratio (for breakfast only) to 1/25, hoping to get him an extra 0.5 units of insulin with breakfast. This will hopefully help to pull that extra glucose out of his blood stream and into his organs...or at least in theory....of course, that's not exactly how it went today....
In regards to his "crashing" at night, meaning his glucose levels drop drastically through the night, the doctor hypothesized that this may be due to Boogie's "honeymoon" period. In order to explain "honeymoon period" I'll need to give you a brief lesson in Type 1 Diabetes (T1D). T1D is an autoimmune disease with no known cause. It means that your body's defense system is attacking your own cells. In the case of T1D, it is attacking the beta cells (insulin producing cells) in your pancreas. Insulin is a hormone that acts as an air traffic controller of sorts, moving the glucose in your blood into the body's various cells to be used for energy and function. As these beta cells get destroyed, they in turn, loose their ability to create insulin. Without insulin, the glucose in your blood can't be moved into the cells, thus being left to build up in the blood stream. In newly diagnosed diabetics, it's common to still have some functioning beta cells. When synthetic insulin is introduced into the body, these remaining beta cells shut down and relax as they are not needed. Eventually, these beta cells will "wake up" for a period of time and begin functioning again. This is referred to as the "honeymoon period" and presents as sudden 'crashes' in blood glucose levels. Boogie's 'honeymoon' period may be occurring during the nighttime hours. While the rest of his body is at rest, these beta cells are kicking into gear again and producing insulin, and thus, in conjunction with the synthetic insulin we're giving him this causes extra glucose to be pulled out of his blood stream. This doesn't mean that he is cured! These last beta cells will eventually be destroyed as well, thus the term "honeymoon," it only lasts a short while. The temporary solution we decided on is to "carb up" before bed. This means giving him a 15g CHO snack before bed without dosing him with insulin. This will increase his blood glucose levels enough so that when he does drop down during the night, he won't fall into hypoglycemic levels.
Wow, I feel like I've completed the first edition of Rosetta Stone: Diabetes.....that was a brand new language I just spoke....
As to not make this all about Boogie, C-Monk is making strides of her own...literally. She can climb all the way up the stairs all by herself now. So, looks like it's time to put the gate up at the bottom again! She's also finally attempting the hands and knees crawl. For a couple months now, she's become a master of the army crawl and can move as fast as a cheetah. So, I think she's been a little lazy to attempt the hands and knees crawl since she can get everywhere she wants to already. But, over the last few days, there's been a few times she's pushed up and crawled like a person...
All right, life is calling....there's laundry to fold and dishes to wash...
Sunday, August 5, 2012
unexpected journey...
It's been a very long week. We're all exhausted, but moving forward. I'm still in shock and haven't quite wrapped my head around everything yet. We are so lucky to have so many friends and family sending prayers and words of encouragement; it's what is getting us through right now. One of you described this all as an "unexpected journey" and that's exactly what it has been. It all came out of nowhere, slapping us across the face, but now we've come to and we're making our way down this new path. I know there's many of you who have been asking lots of questions and don't really know what's going on so I thought I'd recap the last week for you all.
Day 1: Tuesday, July 31
I had been having some concerns about Boogie. He had been drinking a lot and urinating just as much. For awhile a wrote it off to the extreme heat we've been having, but over the previous week it really started to concern me. It wasn't just the amount, but the extreme agitation it seemed to be causing him. He would chug down 10 ounces of water and immediately ask for more, and repeat and repeat. Drinking 30 ounces at a time and getting more and more frustrated. He's always been what we've called a "heavy wetter," but over the previous week he would wake up in the mornings soaking wet, head to toe, the entire crib sopping. I finally said to myself "this is more than just the heat, there's something not right." So, Tuesday morning we brought Boogie into our pediatrician's office. Dr. Bush looked a little puzzled. He acknowledged that these were symptoms of things like Diabetes, but other than that Boogie looked and acted so healthy. We went ahead and drew some blood just to check and sure enough, his blood glucose was 400! Dr. Bush immediately got on the phone with the Endocrinologist while we waited for Boogie to give us a urine sample. After pumping him full of water and an hour of waiting, that sample confirmed our fears....Type 1 Diabetes. I knew it was a possibility based on his symptoms, but never expected the doctor to actually say it. After giving us the diagnosis, Dr. Bush said that Children's Mercy had a bed waiting for Boogie and we should head down there right away to be admitted.
Our heads still spinning, we stopped home to gather some things, not knowing how long we would be there or what to be expecting. Once arriving at the hospital we were admitted right away and immediately bombarded with questions from the endocrinology team. Everyone seemed to be in shock at how healthy Boogie was. Everyone kept saying, "I can't believe you caught it this soon" and "most kids come here in some stage of DKA (Diabetic Ketoacidosis) and we have to get them stable first." The first thing they wanted to do was take lots of blood samples and start an IV. Boogie and I headed into the lab room. I held him on my lap while 3 different nurses tried to start the line. I could not believe (and neither could the nurses) how well Boogie did with this. Through all the poking and wiggling of needles he was overall very calm and only cried a little bit. They were able to get enough for a few blood samples, but couldn't get the IV started so we took a break and headed back to our room.
By this time they had told us we would be there until at least Thursday afternoon. So, J decided to head home with C-Monk to let her take a nap and Boogie and I cuddled up to watch some of the Olympics. Then, in came the vascular team with all their fancy equipment to try again at starting his IV. This, hands down, was the most traumatic part of this entire experience, for Boogie and I both. I know they do this all the time and they're the "experts" at getting a vein, but I'm not sure there tactics helped the situation at all. They wrapped Boogie up like a burrito with one arm sticking out. Then one of them layed on top of him with her armpit in his face and held down his arm like he was some sort of rabid beast about to escape while the other tried to find a vein. I will never get that look of horror on his face out of my head. He screamed and cried like they were trying to kill him, which, from his perspective, is probably exactly how it felt. I tried to stay strong, stroking his hair and soothing him with a calm voice, but inside I was screaming and crying, too. They finally got the IV started and left and I just sat there and held him and cried.
Once that was over, it was on to starting regular checks of his blood glucose through finger pricks and starting his doses of insulin. I'm still in awe of how well he is taking all of this. He's so brave!! That night when they brought his dinner tray up it had a bright orange sticker on it that said "Diabetic." Seeing that label made me so angry. I don't want my son to have a label. I don't ever want him to be defined by this. I just wanted to grab that sticker and rip it up into a million pieces and shove it up somewhere. Why is this happening to my sweet little boy? Just 2 years old??! He shouldn't have to know this life.
Day 2: Wednesday, August 1
Today had it's highs and lows. Boogie is such a smart kid and is starting to catch onto everything that's going on. Whenever anyone would walk into the room he would say "no! all done! no bandaids!" It broke my heart. He's so young, he doesn't understand why these people keep coming in and hurting him. I hate that he's too young to understand. I don't want him to resent J or I or think that we want to hurt him. On the other hand, I'm somewhat thankful that this is all happening while he is so young, because in the long run, he won't know any different. This will just be his way of life.
On a brighter note, we had a huge highlight of the day. I would even call it a highlight of the year, diabetes or no diabetes! It just so happened that the hospital had arranged for some of the KC Royal's to visit today. And it just so happened that Tucker's favorite Royal was one of those that was scheduled to be there. Into our room walked Alex Gordon, Luke Hochaever and Jeff "Frenchy" Francouer!! Boogie didn't really understand at first, and as his usually does when he feels overwhelmed he got really quiet. But, they brought with them a few gifts, one of which was a farm animal puzzle. They opened it up and "Frenchy" started going through all the animals and asking Boogie what they were and what noises they made. People began flocking into the room (nurses, Royals PR people, etc) because Boogie had them all laughing with all his animal noises. The players eventually left the room and I think Boogie finally started to realize who they were and what was going on and starting yelling "Go Frenchy!" just like he does when we watch the games. Once he started, he wouldn't stop. In no time he had the entire nurses station rolling in laughter! Then, he said he wanted to say "bye bye" to Frenchy, so I scooped him up and we headed down the hallway in search of them. As they were coming out of another room Boogie spotted them and yelled "Go Frenchy!" Frenchy gave him a huge smile and said "it's my buddy!" and gave him a big high five. Then, as they were walking away, Boogie yelled after them "bye bye Frenchy!" This was such a blessing. It lightened the mood for all of us. A little bit of the weight lifted off my shoulders. It was just a little glimpse into the idea that Boogie can still be a normal kid.
Day 3: Thursday, August 2
All day yesterday and today we sat through our diabetes education; ie: they threw tons and tons of information at parents who were still in a state of shock and we tried to absorb as much as possible. We're still not experts; there's tons more to learn, but we left the hospital feeling a little bit more aware and in control. I was happy to hear from all the nurses and dietitians, that no, he doesn't have to be on sugar free everything, that in fact, they discourage that. He can eat a totally normal diet, but emphasized the importance of having well balanced meals. There are a few things that he has to have sugar free; basically anything that is liquid at room temperature, juices, gravy, syrup, etc. Other than that, it's just a matter of counting carbs and dosing his insulin accordingly.
We finally were discharged around 4:30pm and headed home....where all hell broke loose....
In the hospital we started using our own poker and insulin pens. J and I were doing all the testing and dosing before we left so we felt really confident with it....but...as soon as we got home, our poker stopped working. We tried and tried and tried, but could get a prick. All the while, Boogie was getting more and more agitated and hungry. We decided to go ahead and let him eat and dosed him accordingly. After dinner, J headed to CVS to pick up all the prescriptions and to ask the pharmacist if they could help with the poker (which of course they couldn't). After taking it all apart and putting it back together, J finally got it working. Only to take his bedtime test to find his glucose level was 500!! Even though the nurses told us not to freak out over high readings, we of course, freaked out. We grabbed the ketone test kit (this tests the level of ketones in his blood, an indicator of whether his body is beginning to break down other tissues in order to feed himself, if these build up it can send him into DKA). We got the test done and then just stared at the meter. It said 0.6 mmol/dL. We both just looked at each other like "?" We realized that the educators never went over this. We reviewed the urine ketone test strips and what to do when those turned certain colors, but because Boogie isn't potty trained, they sent us home with the blood meter....which is in a total different measurement system. After another round of freaking out we finally grabbed a computer and started searching for some conversions. Once we concluded that all we needed to do was just push some fluids in him and send him to bed, we both collapsed with exhaustion. If there's something good to come out of all this it is that J and I have been reassured as to how good of a team we are!
Days 4-6, Friday-Sunday
We're falling into a routine. Boogie doesn't fight any of his tests or even his insulin shots. I am in shock and awe of a 2 y/o. I guess it's now showing to be a good thing that he's so young. He has no idea the severity of what is going on. He's calm and relaxed and his normal ornery self. He uses the alcohol wipes to clean his fingers for his pokes. He helps count down as we give him his insulin shots. It's amazing. J and I on the other hand are physically and emotionally exhausted. For a few weeks, we have to test Boogie at midnight and 3am every night. Which, has proven to be a good thing, because he has "crashed" the last two nights. He glucose levels before we put him to bed have been right around 210/215, but by midnight have crashed to the 70s. This means we have to pump him with a little sugar. I'm afraid Boogie is starting to enjoy his midnight and 3am juice and peanut butter crackers, plus a little snuggle time :) We have to call into the diabetes clinic this week to report all his glucose readings, so hopefully they can readjust his doses and get things balanced better.
On another note....Boogie is thoroughly enjoying the Olympics! Whenever gymnastics is on he runs and jumps around the room and does 'handstands' and kicks then gives everyone hugs saying "thank you much." When swimming is on he yells "scoop! scoop! scoop!" at the TV (something he learned in swim lessons). When track is on he crouches down and waits for J to yell "set, go!" then he springs up and runs across the room. He's a little athlete in the making. If I have anything to do with it, this new challenge won't hold him back. I'm making the promise now that I'm not going to be "that mom." This diabetes is not an excuse, it's not a label. I will push him and let him do what ever it is that he wants to do. This is just the beginning if this new journey. We have lots to learn and understand. We'll keep you all posted along the way.
Day 1: Tuesday, July 31
I had been having some concerns about Boogie. He had been drinking a lot and urinating just as much. For awhile a wrote it off to the extreme heat we've been having, but over the previous week it really started to concern me. It wasn't just the amount, but the extreme agitation it seemed to be causing him. He would chug down 10 ounces of water and immediately ask for more, and repeat and repeat. Drinking 30 ounces at a time and getting more and more frustrated. He's always been what we've called a "heavy wetter," but over the previous week he would wake up in the mornings soaking wet, head to toe, the entire crib sopping. I finally said to myself "this is more than just the heat, there's something not right." So, Tuesday morning we brought Boogie into our pediatrician's office. Dr. Bush looked a little puzzled. He acknowledged that these were symptoms of things like Diabetes, but other than that Boogie looked and acted so healthy. We went ahead and drew some blood just to check and sure enough, his blood glucose was 400! Dr. Bush immediately got on the phone with the Endocrinologist while we waited for Boogie to give us a urine sample. After pumping him full of water and an hour of waiting, that sample confirmed our fears....Type 1 Diabetes. I knew it was a possibility based on his symptoms, but never expected the doctor to actually say it. After giving us the diagnosis, Dr. Bush said that Children's Mercy had a bed waiting for Boogie and we should head down there right away to be admitted.
Our heads still spinning, we stopped home to gather some things, not knowing how long we would be there or what to be expecting. Once arriving at the hospital we were admitted right away and immediately bombarded with questions from the endocrinology team. Everyone seemed to be in shock at how healthy Boogie was. Everyone kept saying, "I can't believe you caught it this soon" and "most kids come here in some stage of DKA (Diabetic Ketoacidosis) and we have to get them stable first." The first thing they wanted to do was take lots of blood samples and start an IV. Boogie and I headed into the lab room. I held him on my lap while 3 different nurses tried to start the line. I could not believe (and neither could the nurses) how well Boogie did with this. Through all the poking and wiggling of needles he was overall very calm and only cried a little bit. They were able to get enough for a few blood samples, but couldn't get the IV started so we took a break and headed back to our room.
By this time they had told us we would be there until at least Thursday afternoon. So, J decided to head home with C-Monk to let her take a nap and Boogie and I cuddled up to watch some of the Olympics. Then, in came the vascular team with all their fancy equipment to try again at starting his IV. This, hands down, was the most traumatic part of this entire experience, for Boogie and I both. I know they do this all the time and they're the "experts" at getting a vein, but I'm not sure there tactics helped the situation at all. They wrapped Boogie up like a burrito with one arm sticking out. Then one of them layed on top of him with her armpit in his face and held down his arm like he was some sort of rabid beast about to escape while the other tried to find a vein. I will never get that look of horror on his face out of my head. He screamed and cried like they were trying to kill him, which, from his perspective, is probably exactly how it felt. I tried to stay strong, stroking his hair and soothing him with a calm voice, but inside I was screaming and crying, too. They finally got the IV started and left and I just sat there and held him and cried.
Once that was over, it was on to starting regular checks of his blood glucose through finger pricks and starting his doses of insulin. I'm still in awe of how well he is taking all of this. He's so brave!! That night when they brought his dinner tray up it had a bright orange sticker on it that said "Diabetic." Seeing that label made me so angry. I don't want my son to have a label. I don't ever want him to be defined by this. I just wanted to grab that sticker and rip it up into a million pieces and shove it up somewhere. Why is this happening to my sweet little boy? Just 2 years old??! He shouldn't have to know this life.
Day 2: Wednesday, August 1
Today had it's highs and lows. Boogie is such a smart kid and is starting to catch onto everything that's going on. Whenever anyone would walk into the room he would say "no! all done! no bandaids!" It broke my heart. He's so young, he doesn't understand why these people keep coming in and hurting him. I hate that he's too young to understand. I don't want him to resent J or I or think that we want to hurt him. On the other hand, I'm somewhat thankful that this is all happening while he is so young, because in the long run, he won't know any different. This will just be his way of life.
On a brighter note, we had a huge highlight of the day. I would even call it a highlight of the year, diabetes or no diabetes! It just so happened that the hospital had arranged for some of the KC Royal's to visit today. And it just so happened that Tucker's favorite Royal was one of those that was scheduled to be there. Into our room walked Alex Gordon, Luke Hochaever and Jeff "Frenchy" Francouer!! Boogie didn't really understand at first, and as his usually does when he feels overwhelmed he got really quiet. But, they brought with them a few gifts, one of which was a farm animal puzzle. They opened it up and "Frenchy" started going through all the animals and asking Boogie what they were and what noises they made. People began flocking into the room (nurses, Royals PR people, etc) because Boogie had them all laughing with all his animal noises. The players eventually left the room and I think Boogie finally started to realize who they were and what was going on and starting yelling "Go Frenchy!" just like he does when we watch the games. Once he started, he wouldn't stop. In no time he had the entire nurses station rolling in laughter! Then, he said he wanted to say "bye bye" to Frenchy, so I scooped him up and we headed down the hallway in search of them. As they were coming out of another room Boogie spotted them and yelled "Go Frenchy!" Frenchy gave him a huge smile and said "it's my buddy!" and gave him a big high five. Then, as they were walking away, Boogie yelled after them "bye bye Frenchy!" This was such a blessing. It lightened the mood for all of us. A little bit of the weight lifted off my shoulders. It was just a little glimpse into the idea that Boogie can still be a normal kid.
Day 3: Thursday, August 2
All day yesterday and today we sat through our diabetes education; ie: they threw tons and tons of information at parents who were still in a state of shock and we tried to absorb as much as possible. We're still not experts; there's tons more to learn, but we left the hospital feeling a little bit more aware and in control. I was happy to hear from all the nurses and dietitians, that no, he doesn't have to be on sugar free everything, that in fact, they discourage that. He can eat a totally normal diet, but emphasized the importance of having well balanced meals. There are a few things that he has to have sugar free; basically anything that is liquid at room temperature, juices, gravy, syrup, etc. Other than that, it's just a matter of counting carbs and dosing his insulin accordingly.
We finally were discharged around 4:30pm and headed home....where all hell broke loose....
In the hospital we started using our own poker and insulin pens. J and I were doing all the testing and dosing before we left so we felt really confident with it....but...as soon as we got home, our poker stopped working. We tried and tried and tried, but could get a prick. All the while, Boogie was getting more and more agitated and hungry. We decided to go ahead and let him eat and dosed him accordingly. After dinner, J headed to CVS to pick up all the prescriptions and to ask the pharmacist if they could help with the poker (which of course they couldn't). After taking it all apart and putting it back together, J finally got it working. Only to take his bedtime test to find his glucose level was 500!! Even though the nurses told us not to freak out over high readings, we of course, freaked out. We grabbed the ketone test kit (this tests the level of ketones in his blood, an indicator of whether his body is beginning to break down other tissues in order to feed himself, if these build up it can send him into DKA). We got the test done and then just stared at the meter. It said 0.6 mmol/dL. We both just looked at each other like "?" We realized that the educators never went over this. We reviewed the urine ketone test strips and what to do when those turned certain colors, but because Boogie isn't potty trained, they sent us home with the blood meter....which is in a total different measurement system. After another round of freaking out we finally grabbed a computer and started searching for some conversions. Once we concluded that all we needed to do was just push some fluids in him and send him to bed, we both collapsed with exhaustion. If there's something good to come out of all this it is that J and I have been reassured as to how good of a team we are!
Days 4-6, Friday-Sunday
We're falling into a routine. Boogie doesn't fight any of his tests or even his insulin shots. I am in shock and awe of a 2 y/o. I guess it's now showing to be a good thing that he's so young. He has no idea the severity of what is going on. He's calm and relaxed and his normal ornery self. He uses the alcohol wipes to clean his fingers for his pokes. He helps count down as we give him his insulin shots. It's amazing. J and I on the other hand are physically and emotionally exhausted. For a few weeks, we have to test Boogie at midnight and 3am every night. Which, has proven to be a good thing, because he has "crashed" the last two nights. He glucose levels before we put him to bed have been right around 210/215, but by midnight have crashed to the 70s. This means we have to pump him with a little sugar. I'm afraid Boogie is starting to enjoy his midnight and 3am juice and peanut butter crackers, plus a little snuggle time :) We have to call into the diabetes clinic this week to report all his glucose readings, so hopefully they can readjust his doses and get things balanced better.
On another note....Boogie is thoroughly enjoying the Olympics! Whenever gymnastics is on he runs and jumps around the room and does 'handstands' and kicks then gives everyone hugs saying "thank you much." When swimming is on he yells "scoop! scoop! scoop!" at the TV (something he learned in swim lessons). When track is on he crouches down and waits for J to yell "set, go!" then he springs up and runs across the room. He's a little athlete in the making. If I have anything to do with it, this new challenge won't hold him back. I'm making the promise now that I'm not going to be "that mom." This diabetes is not an excuse, it's not a label. I will push him and let him do what ever it is that he wants to do. This is just the beginning if this new journey. We have lots to learn and understand. We'll keep you all posted along the way.
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