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. :)

Get Better Soon

(Caleb did a sweet drawing and note for Aidan while he was in the hospital. Here's what it said.)

11-30-11

Dear Aidan, get well soon. How are you doing Aidan? It's not right without you. :( How was it geting shots and nedles in your fingers? I had trouble sleeping without you.

Love, 1, 3, 5, 8, 7

1=C
5=L
7=B
8=E
3=A

Our Newest Superhero - Part Two

We arrived at the ER and I took Aidan inside while Weston parked. The nurse doing check-in was very nice, but we had to wait a bit until she was done helping someone else. It wasn't too long though, before they got us processed and took Aidan back to test his blood sugar. I couldn't help but think as he was screaming about that first finger prick, that I was glad he couldn't comprehend that this was only the beginning of a lifetime of numerous finger pricks daily. She told us her meter read over 500, and later we found out it was up in the 700s. Yikes. (His target range right now is 80-150) He also weighed in at 36 pounds, while he was normally about 42. (We felt bad we hadn't even noticed the weight loss, but he had also shot up quite a bit recently.) After a few more pokes and prods and stickers, they sent us back to the waiting room until they could get us into an available bed/room in the Peds ER.

It was kind of surreal waiting there for those 20 or so minutes. Knowing our boy was very sick, and anticipating what the next 48 hour would bring. They had a neat kids' play table though, and Aidan was pretty content playing on that with us. (I think he was still a little in awe of having mom and dad's undivided attention, despite the circumstances.)

Eventually they called us back to a room, and got an IV started. That was an intense experience for a little boy who was feeling extra yucky, extra sensitive, and extra scared, despite how excellent the male nurse who was handling him was. They also had a Child Life Specialist who worked the Peds ER department who was beyond amazing. Her job was to try to make Aidan as comfortable and distracted as possible, as well as to try to explain to him on kid terms what was going on. She had an IPad and a DVD player, and also brought him a big teddy bear to keep. She even went out of her way to come visit his room (way on the other side of the hospital) the next day just to say hi. Top notch.

It was a relief knowing insulin was now getting into his little body, and their goal was to bring his blood sugar (BS) levels down slowly (bringing it down too quickly could pose other complications). He was able to watch a couple movies (although he hated the feeling of the IV so much I don't think he moved his entire arm for hours), and we were able to make some phone calls and tag team to run grab something to eat. (Felt so bad for him, he kept complaining he was SO hungry, but we couldn't feed him anything yet...)

I had my first mini-emotional breakdown at this point. We'd been informed there was a small cafe fairly close to the ER where we could grab some food, but it closed at 8. Weston went first, and was back by 7:45. So I dashed out, but as I got there around 7:50, the guy was closing up and had already cleared the cash register. This, plus all the stress of the last few hours had me almost in tears. But knowing Weston would have to leave soon, I was worried I might not have another chance to eat until late the next day, and so I decided to navigate the huge maze of a hospital to find the big cafeteria. I finally found it, but most of the food options had shut down, and it was hard to find anything appetizing. Adding to my already unbalanced emotional state the fact that I am extremely uncomfortable in unfamiliar places where I don't know routines, and I was pretty much a sobbing mess by this point. I finally paid way too much for a simple sandwich and then sat at a booth eating and crying. Pathetic, I know. I couldn't tell you how it tasted, but at least I got some food in me, and then I made it back to Aidan's ER room after only getting lost a few times... (I'd also left my phone in his room, so I couldn't even call Weston for support).

Once I got back, they were beginning to get ready to transfer Aidan to the Pediatric Intermediate Care Floor. (Not ICU, but not regular care).

Side note: We also experienced a shift change at this point, which is extremely tough on a little guy. I cannot even begin to count the number of nurses, doctors, medical students, and other hospital 'people' this poor little man had to interact with. Even for a boy who is normally quite social, it was entirely overwhelming. Especially when they'd all expect him to warm up quickly to their slightest well-intentioned kid friendly attempts at developing a rapport with him. They also all asked different versions of the same questions though, and it was even frustrating for us that, while the care and the hospital was overall superb, they all seemed to have slightly different takes on things and ways of doing things. I even saw a nurse really disrespect a doctor! It got a little tense some times, but it was probably good for me as it propelled me to speak up stronger as Aidan's advocate.

Our Newest Superhero -Part One

Last Tuesday, 11-29-11, was a day that changed what 'normal' means for our family.

Most families call it D-Day.


Our Aidan was diagnosed with diabetes.



About a week prior, I had started noticing our spunky 5 1/2 year old having to pee more often, and being more thirsty than usual. I cringe now when I think of how I got frustrated I was with him when he had to pee 3 times during the town's Christmas parade. (Picture me on my own with all 5 kids, everyone bundled up because it was very cold, and no convenient restrooms...Plus,I had remembered to make them go beforehand!) It didn't really register until a few days later that something must really be going on with him. I mentioned it to Weston, and he assured me at first that I was being paranoid. Then Aidan starting wetting his bed at night, or waking up super disorientated because he had to pee and then couldn't quite make it to the bathroom. By Thursday, Thanksgiving, we both started to really worry that there must be a problem. We'd always heard about these as significant symptoms of diabetes... But now it was a long holiday weekend, and the doctor's office was closed until Monday. He was acting mostly normal and healthy otherwise, so we didn't think it warranted a visit to the ER.

We called first thing Monday morning and left a message with a nurse. The office called back in the afternoon and said to bring him to the lab for a urine test,which we then did. They called around 11:00 on Tuesday morning and said that there was definitely glucose in his urine, and that they wanted to us to bring him in for a blood test. Weston went and picked him up from school and thankfully handled that one. Aidan did not like getting blood drawn. He came home aftewards and had lunch, and then we decided to send him back to school. It was about 1:15. Weston headed back to work, and shortly after, about 1:30PM, I receieved another call, this time from Dr. Larson herself. She informed that his blood sugar levels were very high which meant he did have diabetes. She was going to call an Endrocynologist at the Pediatric Diabetes Resource Center (PDRC) at the Children's Hospital in Peoria to report the levels and see how they wanted to proceed. She told me it would be very likely they want to admit him to get things regulated. After I hung up with her, my emotions starting spinning a bit, especially as I called Weston, but then the adreninlin kicked in and I flew around the house trying to get ready. Packing a bag with clothes and activities was easy... figuring out childcare for our other 4 boys was not.

It was the hardest time of the day... my mom friends had to worry about picking their own kids up from school soon (and heading into the HW/dinner prep frenzy), and their vehicles couldn't accomodate 3 extra children... our reliable student sitters were still in class... and our young adult friends were either at work or at school.

Through amazingly supportive friends, and with God's help I'm sure, we eventually got it all worked out by phone as we were already on the road with Aidan to the hospital, which is 45 minutes away. We left K, E, and Q with some mom friends at church, who transported them home a little later when one of our students was able to come over after school got out. Caleb was able to get a ride home (and some playtime) with a neighbor. In the late afternoon, a young adult friend came to take a shift. She helped with HW, gave them baths, and put them to bed. Then one more helper relieved her for the latest shift, until Weston got home from the hospital around midnight. Talk about coordination!

When the doctor's office called back, they said that the PDRC wanted us to get Aidan to the Emergency Room at the Children's Hospital ASAP, and that they would most likely admit him from there.

So once we dropped the younger boys off, we rushed to Silas to pick up Aidan. We also called Caleb out of class and explained to him what was going on. Aidan's teacher came to the office with Aidan, and we were able to explain things to her. She responded right away by telling us that he's in good company because she has diabetes too!!! How immediately comforting that was!

The van ride to the hospital with Aidan was tough... trying to explain to him on 5 year old terms what was going on without scaring him too much... He was a trooper though, and feeling pretty yucky by now, and kind of just took everything in.