Luckiest Mom

I woke 4 sleeping boys up at 8AM this morning (some mornings they are up before 7, and other mornings it can be a huge hassle to wake them up) with the reminder that it was Friday,which means sugary cereal for breakfast, it was Pajama Day at school, and it was family pizza and movie night tonight.

Shortly afterwards, as Aidan was getting dressed, he commented to me with a killer smile on his face, "Mom, I must be the luckiest kid alive." "Why is that Aidan?" "Because I have so many of the luckiest days."

Muscle Men

 

We put up a pull-up bar in the boys doorframe recently. Since then, they've been very motivated to work on, and show off, their muscles.

Update on Aidan

Thought it would be good to record an update on how things are going, 2 months after diagnosis.

* Having a diabetic child has already become 'normal' for us. Its amazing how quickly routines get set, and how quickly God took the emotional roller coaster of those first few weeks and replaced it with peace and a sense of normalcy.

* He's been doing great. His levels have leveled off, and been great. He hasn't experienced a true low yet, or at least a symptomatic one. Actually, Friday his teacher called at lunchtime and reported that he BS level was at 45 when they did his regular check. He wasn't acting or feeling any different, but yikes, that's the lowest he's ever been. He was 57 that morning also. Must've just been a low day. Thankfully it did not cause me as much anxiety as I thought. And he was thrilled, because he got to partake in the 100 day cake and ice cream with no extra insulin shot.

*Mealtimes have become easier. We've begin to memorize carb counts in foods, and also have began to feel comfortable making estimates here and there, and even have gained a comfortability adjusting his insulin doses as we feel necessary.

* Two weeks ago he let a babysitter give him his bedtime shot. This was a big step! And this week? He started doing his own. How amazing is that?

We are so so thankful for all the support we've received, and for the fact that Aidan is such a great kid.

God is good, all the time.

Our Newest Superhero Part Six

Okay, last post of this series, finally. Just some random reflections from the whole experience that I wanted to jot down.

In the midst of the chaos, we felt so much gratitude. Gratitude that we caught it pretty early. Gratitude that it was nothing more serious. Gratitude that we had so much support from so many directions. Gratitude that diabetes research over the last few decades have incredibly improved diabetes care.

There were so many little 'hugs from God.
-Finding out his kindergarten teacher also has diabetes, and an encouraging text from her while we were in the ER. This text also informed us that the school nurse has a grown daughter with diabetes who was diagnosed at age 2. We are not only blessed to have a school nurse at all (the PDRC said many schools they work with don't), but one who has personal knowledge and experience with a diabetic kid! Those 2 things made the transition back to school SO much easier.

-Also, we've had several students over the years with diabetes. I can't tell you how many times my mind was drawn to thinking about them, and about how wonderful they were, and what normal lives they lead. This was huge! Also, the first night back at youth group, we had a first-time visitor. When Weston was sharing a little bit of Aidan's story with the group, she cheered at the word diabetes. Because she has it too. It's been neat to see how having diabetes is a little like a membership into a secret society. I received so many encouraging FB messages. Some were from people that I didn't even know had it, and many others pointing me towards other moms in our area who have diabetic kids. The JDRF has also been so pro-active. They sent a neat care kit, and made sure other moms called to check in on how we were doing.

-Here's another one: Aidan's buddy from school wanted Aidan to come over to play that Saturday after we got home. As I texted his mom back, I realized she hadn't heard about our ordeal yet. As I explained it, she was quick to inform me that her 15 year old stepson was diagnosed one month prior. Her family was going through the same thing! He lived in PA, but happened to be visiting that weekend. So when Aidan went over there to play, he got to meet a new cool older friend who has diabetes also, and who was super sweet bonding with him over it. (and he has since moved to Galesburg) Also, I feel so comfortable letting Aidan play over there! They know exactly how to handle things!


* Out of all our boys, Aidan is our best eater by far, and he isn't even crazy about sweets. This boy has been known to choose extra vegetables over dessert! And we have reflected on his age, 5, being so great for the time of diagnosis. He is old enough to understand a bit of our explanations, and to be reasoned with. Yet he is young enough to still trust us completely, and to not have a lot of anger about this major life change.

Overall, he has handled it so well. There have been moments of showing off getting shots and delighting in the extra attention, to moments of breaking down. The hardest part for us has been his meltdown/tantrums. Aidan has been a pretty easy kid since about age 3, but since his diagnosis he has had some super emotional meltdowns, usually in reaction to being told to do something he doesn't want to do. He began testing new boundaries. Some were directly related to approaching a shot, but most were unrelated. We finally decided that he just didn't have any emotional reserves left for dealing with the normal stressors of life. But it is SO hard to know how to parent him through these times. With a firm consistency, or erring toward more gentle indulgances as he is coming to grips with his harsh new reality. We've also wondered if maybe that is part of how he acts when his BS is a little high.

As for me, I was staying pretty stoic, because I think I had to in order to do what had to be done. I remember finally breaking down a few nights after we got home. The boys were in bed, and Weston had run to the store for groceries, and I was sitting on the couch and I just lost it, sobbing uncontrolably. I think it was the first time I'd really sat still all week, and I know it is normal to grieve some. I was grieving the loss of his completely carefree childhood, the loss of what we knew as 'normal', and embracing the fears for just how this could affect him in long-term.

My mind also did other crazy things, like fret over weird what if's. What if he was kidnapped? What if the government collapsed, and it was no longer possible to move to the wilderness and just live off the land? (I know, crazy) And what if he couldn't be a missionary to some remote tribe now? (This was silly once God assured me that of course He wouldn't allow him to have diabetes and then call him to do something that diabetes prohibited him from doing) Also, of course, we fretted over how this would affect us financially. Not only because of this hospital visit, and all the future doctor appointments and huge amount of perscriptions, but even with our normal grocery bill (needing to purchase more carb free items, prepackaged-easier-to-count carb items, and more fruits and veggies).

Then, at certain times new realizations/questions would hit me. How would this affect him driving some day? Could he ever live on his own?

My gut reaction was to hole up for a month, and read everything I could. Unfortunately, while I did this to a minimal extent, life must go on, especially when it's December. After a few weeks passed, I realized that I was already to the point where his diabetes wasn't the #1 thing on my mind 24/7.

Returning to school went super smoothly. He brought a book, called, "Taking Diabetes To School" that he shared with the class. His teacher and the school nurse were very intentional with how they wanted it to be embraced in the classroom. He does his BS checks and shots right there! The kids were fascinated to watch at first, but now it is just normal. I even had a friend comment this week that while she was subbing in his class recently, she observed some kids giving pretend insulin shots to a stuffed animal, because he was diabetic, you know. I love that Aidan being in their class will help them understand diabetes a bit, and to see kids who have it as normal. How powerful that would be if any of them ever get diagnosed!
Since I am there volunteering on Mondays anyway, now I just stay through his lunch and oversee his shot. The nurse handles it all the other days. (Took me a bit to grasp that his 'special need' comes with some extra rights, such as her changing her schedule to accomodate for that.)
His teacher has also commented, not that she would wish diabetes on anyone, but that out of her whole class, she would've chose him to be the one who could handle it best. He's responsible, intelligent, and emotionally consistent. She said it will be easy to recognize when he is 'off' because he is always so 'on', and that that is not true of most 5 year olds. :) That was a sweet way for her to share encouragement.

Exuberance

Quinn sure keeps us smiling all the time. God sure packed so much joy into that little boy. We are so thankful he is ours.

Happy 2nd Birthday Quinn!

We love your zany personality! You are such a cute, clever, funny, and loving little man.

Complicated

Just a glimpse into how complicated it is to have a meal at our house now...

Snapshot from lunch today...

Aidan was served:

1 Bologna and Ham Sandwich (his choice), which has 26 grams of carbs. (mainly the bread, since Ham is 'free')

1/2 cup of milk, which has 5.5 grams of carbs

Pretzels: 23 pieces = 32 grams

And a graham cracker with peanut butter and cheerios. (8.4 grams) The boys and I had made these to set out for squirrels/birds earlier in the morning, but when the others got to eat part of one for fun, we had to set Aidan's aside to factor in at lunch time. And it was not easy to look up... half a graham cracker, 12 cheerios and a smidge of peanut butter.

So, we pray and start eating... then he downs his milk and asks for more. Add 5.5 more carb grams. A little later he wants some grape juice, add 4 more grams. (mind you, we had not usually been in the habit of giving refills except for water, but with Aidan we are still pretty much letting him consume all he wants at meals)

He takes one small bite of the graham cracker concoction, and decides he doesn't want any more. (Erase previously listed grams and instead round off to 1 gram for that bite.) He then announces he is done with his pretzels, so we have to count to see how many are left (10), to figure out how many he ate. (Recalculate that, if 23 pretzels have 32 grams, how many do 13 have?)

Also, today is Quinn's birthday, but we are going to celebrate at dinner on Monday since this afternoon/evening were already overscheduled. I decide he at least needs an Oreo with candles in it, so we can sing to him on his actual birthday. So we pass out one Oreo to everyone... and look that up, which is 2.5 grams. But then, Aidan doesn't want the cookie, so take those grams right back.

He is supposed to have his insulin shot 15-20 minutes after he begins eating, at the latest. So at about this point we start stressing about figuring the final math and preparing the dose.

Final tally: 51.7 carbohydrate grams, divided by 45 (his lunchtime ratio) =1.1
His pre-lunch blood sugar was 153. We have to subtract 150 from that, and divide that by 180, to find out how much additional 'correction' insulin he needs, and add that to the insulin for the carbs consumed. Fortunately, this time the correction factor was zero, so his final dose was just 1 unit.

Phew. Head hurt yet? Also imagine that there are 4 other little boys at the table, one of which just turned 2 today, and still needs a lot of attention during meals, and one of whom did not eat his 3 required bites of his hot dog last night, so whom cannot have another meal until he does (or until 24 hours later). So he is whiny, and picking at those hot dog bites, which he eventually ate, praise the Lord.

And, this is a Saturday, and Weston was home to help, and it was still crazy. We decided to eat our lunch after they were done, just to take away one more component of the equation.

Our Newest Superhero- Part Five

I woke around 7 the next morning. I was a bit irritated at a nurse who condescendingly told me I should wake Aidan up (poor little man, who was so exhausted) because "he is a diabetic, and diabetics shouldn't sleep in". I think I will trust the nurse who specializes in kids with diabetes, whom I'd specifically asked the day prior. She said that it was fine for him to sleep in.

His levels looked a little better throughout the night. We got another visit from a team of residents, and met a new shift of nurses. I later figured out that the total number of different medical personnel (between nurses, doctors, child life specialists, etc) that he was expected to interact with was around 40, not counting all the medical students on their rounds. And we were only there for a day and a half!


The endriconologist came by around 10AM and said she felt confident releasing us, so the discharge process began. I played with Aidan a bit in a cool play room they had on the floor, and we chose some games to play in our room. They had to take his last IV out, which was NOT fun, again. It was especially not fun when about a minute later the site started bleeding pretty rapidly, and there was blood all over the floor and his hand. Freaked the poor kid out even more. Weston arrived right about then to pick us up, with Quinn, who'd been missing Aidan terribly. (when he awoke he always asked for mommy first, and then Aidan)


So we were off. 36 hours after being admitted, and with a whole new level of burden for our son's life in our hands. For now, he would require 4 insulin shots a day, and at least as many finger pokes. We had to learn how to read food labels diligently, and to perform calculations to determine the amount of insulin needed in each shot based on his food intake and based on how high over his target range his blood sugar was. I kept thinking that this would be a whole lot more manageable if he were our only child. Adding all this into the normal chaos of our lives has been the tricky part.

But it still felt so good to walk out of there and load in the van. We quickly had the realization that we needed stop and get lunch, since waiting until we made it home would be putting lunch pretty late for him. We pulled out the guide they gave us, and remembered a Culvers nearby, and that restaraunt was on the guide. So we nervously added up the carbs in his corn dog and drink, and did our first shot right there in the van, completely on our own. Easy peasey. Ha!

The hardest moment of this day came when Aidan was struggling with why he had to still have this shot, because, "I'm all done with the hospital, so I am all better right?". We'd attempted to be very diligent in explaining everything about the disease to him in the hospital, but it is a lot for a 5 year old to comprehend. And to see him just wrestling with the fact that this was a 'rest of his life' type thing, was incredibly heart-wrenching.

Another moment that illustrated his comprehension of things came over the next weekend, when he started to grill me about what would happen if we ran out of medicine? What if all the stores and hospitals in the world ran out? Gulp, imagine being only 5 years old and trying to grapple with the fact that you need this medicine (insulin) or you would die. I reassured him as best I could, but yikes, that was tough.

And last night, when we got home from church, he made a quick little comment to me. "Mom, I sure hope they find the medicine to make diabetes go away real soon." Gulp. Me too, buddy, me too.

Our Newest Superhero- Part Four

Aidan was feeling so good he chose to walk to his new room, being quite charming the whole way. The new private room was very nice, but of course it meant getting used to a whole new team of medical professionals again. They had to draw some more blood, which was a nightmare for him again, but a nice nurse brought him some very cool toys as a reward. And then there was some confusion about lunch, since we started waiting on the room transfer at about 10:45, but didn't actually get in the new room until about 12:30. (Each floor assumed we'd eaten on the other.) I kept asking, but it was finally about 1:30 by time his lunch arrived. Not the best for a newly diagnosed diabetic kid who needs to eat meals at regular times. Hmmpfh.

It was about now that Weston arrived. We are truly grateful that Weston's sister was willing and able to take a day off, and drive up from Champaign to watch the kids so Weston could come out for a few hours. We also had friends helping earlier in the AM with childcare and with transporting Caleb to school. Such great support.

We barely got to converse though, before we had our next hour long training session. This time with the nurse from the Pediatric Diabetes Resource Center (the great center at the Children's Hospital that we are going to quickly get to know really well). She brought the supplies (medicine, syringes, shot pen, glucometer, etc) and trained us how to use them. She was great, and we even had to practice on her with saline. I'm so glad Weston was there for that, it was a lot of information, crucial information, to take in.

After she left, we had a few minutes to gather our thoughts before our next training session, this time with a social worker. She talked more about the emotional aspect of this diagnosis, for him and us, and a lot about how to develop a plan for handling all this at school.

Phew. So much information to take it. After awhile you can only thoroughly process so much, but we were coming a long way fast.

Weston had to leave around 4 in order to make it back for Junior High Youth Group. We had been visited several times by our endocrinologist throughout our stay, and she was really leaning towards letting us go home that night. Aidan was super excited about that, and although it felt a little scary, we knew we could do it, and kind of just needed to dive into doing things on our own. So we were hoping that Weston would just be able to drive back out after youth group (with more huge support from a friend watching the boys) to pick us up.

Aidan and I had dinner, and tried to relax a bit. They had video games on the TV, and I had my Ipod so he was good. We also worked on a Star Wars puzzle that they gave us.

I was brave enough to try his finger poke for the first time at dinner, and he loved that the lancet (poker thing) they gave us seemed to hurt a lot less than the hospital grade one the nurses had to use. It required way less blood, also. The PDRC nurse said we could use ours to poke, but that even though she wanted us to use our glucometer to practice, the hospital had to use theirs as well, which was fine. Little did I know what issues that was going to cause later.

I even did my first shot on him with our new 'pen' (much easier than a syringe). He didn't like it tons, but didn't do too badly.

Weston's sister Robin stopped by on her way home for a visit. It was very nice to see her, and it lifted Aidan's spirits also. (I forgot to mention he also had 2 visitors earlier than morning also; our interim children's pastor and an elder. So very nice of them!)

We got a visit from the endocrinologist around 6:30. She was ready to check his BS and then discharge us if it was acceptable. However, when we did it, our glucometer read in the 440's, and the hospital glucometer read above 500. Since she was there, she mercifully cancelled the extra blood draw (which I guess is protocal for the nurses if levels are above 500). This is when I saw a nurse get super snooty and disrespectful toward the doctor because our doctor cancelled the blood draw because she felt it unnecessary, and didn't want to put Aidan through more junk. The doctor was satisfied with the number on our personal meter(as opposed to the hospital's), but wanted to test him again at 9PM, before she felt okay discharging us. I was comfortable with this.

Unfortunately, this left Weston in limbo, as he decided to go ahead and make sitter arrangements, and to start driving out around 8:45 just in case we got the green light after the 9PM BS check.

Finally 9 o'clock rolled around. They came in to test, and we had a repeat scenario of earlier. Our personal meter read in the 450's, and the hospital one read above 500. (By this point I was pretty irritated that two glucometers could test the same blood and have such a discrepancy. Isn't that dangerous?)

The hard part now was that there had been a shift change, and the team of nurses now on duty hadn't had the whole experience with the doctor earlier. They treated me as if my glucometer didn't count. They asked if I had 'callibrated' it. During the whole training on it earlier, the nurse had never mentioned that at all, and she'd used it and relied on it just fine. But now, they treated me as if I was ignorant because I didn't know about it, and that must be why my meter was so 'off'. I went on a personal quest through the instructional book trying to figure all that out. There was one nicer nurse who was helping me. We finally found some instructions for callibrating it, and some control solution. But now, the instructions had different target results for different kind of control solutions (low, regular, or high), but our control solution DID NOT specify what kind it was. I was about ready to lose it by this point. The nurse was checking with other nurses trying to figure it out. I finally did find a number to call on the manual, so I called it. 25 minutes after a painful conversation with a guy who couldn't speak English very clearly and who treated me as if I was bothering him, I was finally given the info that our control solution was 'regular'. So we were able to perform the callibration test... to find out the glucometer was reading accurately all along. Ugh. But, they had already followed hospital protocal for their machine and ordered more blood tests, and one more in the middle of the night. Poor guy.

Meanwhile, the endrincologist had been called, and she made the call that we needed to stay through the night to continue monitoring. About this time Weston arrived. :/ At least he got to visit with us a bit before he had to turn around and head back home, and he listened to me vent a bit (all the while I am trying to stay so calm and collected in front of Aidan, since the last thing he needed was to see his mom as an emotional wreck).

Fortunately, Aidan and I were so exhausted, that we were able to sleep a little better that night. There was actually a pull-out bed in this room, which was wonderful. I woke up to help him to the bathroom a few times, and to listen to his cries a few times as they were checking him, but he calmed down pretty quickly each time.

Our Newest Superhero- Part Three

The trip to our new room was sobering, as we passed by many rooms containing infants and children who were much worse off than our Aidan. But Aidan did think it was rather cool that he got to ride in an elevator while in bed. His new spot was in a large room that had several other young patients who were hooked up to tubes and machines. This definitely gave us some needed perspective.

It took awhile to get him all settled, and to get used to a whole new team of people. And then he lost it when they decided they had to put another IV in his other arm for drawing blood throughout the night. It took many of us to restrain him, but he did get another teddy bear and a cool soccer blanket out of the ordeal. After that, Weston had to head back home. Aidan wanted to watch another movie, and even though it was after 11PM, and even though the movie was Karate Kid, I let him. I probably would've promised the kid the moon at this point, if he'd asked. He was starting to regain some color, and perk up a bit, which was a relief.

About then, we were given the good news that he could eat something if he wanted to, and he did want to. So I was led to a "hospitality" room to pick out a snack. I was told that I just needed to count the grams it contained. I found it interesting though, especially now 2 weeks into this, that when I asked her to clarify grams of what, the nurse had to go back and make a call to find out that it was the carbohydrates we had to count. I had no clue how quickly that would be a huge part of my everyday life.

So I picked out some cereal and milk, and brought back to his bedside where he began salivating over it. But now, we had to wait for a certain medicine before he could eat (medicine I now know intimately as Lantus). We literally waited for close to an hour... I heard the nurse call down to the pharmacy for it to be sent up. When it didn't arrive in about 15 minutes she called back, and was eventually told that they didn't bring it up because there was some kept on our floor alreday. So she called her head nurse to ask, and no, there was none on our floor. So they had to call back to the pharmacy, etc. It was a huge runaround, with tempers flaring. They tried to save face in front of me a bit, trying to act like things were proceeding normally, I guess without fully realizing that their phone was just on the other side of the curtain and that I could hear every exchange. It was about then that the main doctor (not the endocrinologist, but maybe the pediatrican on duty?) came to check in on Aidan and she was pretty livid that the boy hadn't eaten yet!

Poor hungry Aidan finally got to eat... (and get his first insulin shot not from his IV) but I think waiting so long set him off even more emotionally, because from 12-1AM he was entirely irritated and done with his IVs. He started out whimpering, but it quickly elevated to crying/screaming. He just said they hurt. Nurses checked them out, they seemed fine, but we couldn't calm him down. Quite a team of people gathered trying to calm him because he was waking up the whole room. It was one of my hardest hours as a mother... just trying to comfort him and calm him down. I don't even remember what finally did it, maybe just exhaustion? But he finally calmed down and eventually drifted off to sleep around 2:30AM, and I tried to relax in a pretty uncomfortable chair that didn't even recline.

I awoke with him about every hour, to assist him as he had to pee. I also awoke when they came and pricked his finger every 2 hours, but he amazingly slept through that, and through the blood draw. I also woke up to several other 'crises' of the other children in the room throughout the night. Certainly not the best night's sleep. :)

We woke up pretty early, getting introduced to the new medical personnel for this shift. One amazing thing was that our main new nurse was actually someone who goes to our church. I didn't actually know her well, just her husband a bit, but it was still super comforting, and definitely a God thing considering we were at a huge hospital 45 miles away from home.

We got to order breakfast, and then meet more and more people, including a group of residents doing their rounds with their doctor (felt like Scrubs,and was kind of fun to observe). They also took one IV out, which was nice to have it gone, but the experience of taking it out seemed just as unpleasant to him as putting it in. Next, I had my first one hour session with a dietician, who handed me a huge binder of information and then talked me through Aidan's meals plans and tutored me on the math equations I needed to understand to calculate his necessary insulin dose. It's a very good thing Weston and I both enjoy math.

We were told at about this time that he was doing well, and they were transferring us to a private room (hooray)on the regular Peds floor. :)