When 7 Days Feels Like Years
Sometime right before Christmas 2015 I got a cold. It was pretty run of the mill–cough, sore throat, and out of energy. My son Jace is 5 and my daughter Bella is 6, so my wife Rhonda and I know how these things move through the family. If one person gets it, pretty much everyone is going to get it.
Over Christmas break, Jace started drinking more than usual. He was always thirsty. He was also, as it goes, always peeing. We visited family in southern California to celebrate New Year’s Eve and we made a ridiculous amount of stops for him to pee on the side of I-5. Our best guess was that he had a sore throat, but he’s 5, so maybe he doesn’t really know how to say that he has a sore throat, but he can tell us that he needs water–a lot of water. So of course he’s peeing a lot. We let him drink and pee. We bought him some mild cough drops. We hoped it was just this cold that everyone would probably get.
We thought that maybe he might be dehydrated and was trying to rehydrate. On Thursday January 7th, we had dinner at Applebee’s. He had already consumed his whole water bottle from school and 2 small Gatorades. When we got to Applebee’s, he picked chocolate milk with his kid’s meal. He drank it all right away. Then he drank Rhonda’s water–a whole adult sized glass of water. He had to pee. I took him to the bathroom. By the time we returned to the table, he was thirsty again and started in on the refill.
This was too much. It was obviously not normal. So we did the scary thing. We googled it. It’s scary because it might be helpful but it might lead us down paths that we don’t need to be scared about. Searching for “kids insatiable thirst” turned up pages and pages of the same thing: type 1 diabetes.
Rhonda’s dad had type 1 diabetes, so it wasn’t far fetched. We went home after dinner that night and I tried not to panic. Rhonda was already sure that it was diabetes. We both wanted a doctor to check it out. We hoped and we prayed. Bella and I crawled into bed with Rhonda and Jace and we asked Jace if we could pray for him and if we could anoint him with oil. He said yes. His little heart has such big faith already. We anointed him and prayed and that night he wet the bed a couple times. The next morning, we took him to school, called the doctor’s office, and we went to the school at 10:15 to get him out of school. He was happy. He was confused. He didn’t feel sick, he just couldn’t get enough water and couldn’t stop peeing. He wasn’t sick at all, but to the doctor we went.
His first test was a urine test. When they asked us to test him, we informed them that he had just peed. But we tried anyway, and of course, he had no problem peeing again. This test came back with ketones, which prompted a finger prick. He was ok with this one leading up to it because he wasn’t sure what would happen. They tested him and he cried and his glucose came back around 600. They told us that normal for adults is under 200.
When the doctor came in, he told us that he had phoned over to the emergency room because he needed to get fluids and some insulin right away. They also told us that we should probably prepare to go to UC Davis or Sacramento. All of a sudden, visiting the doctor because my son was drinking and peeing a lot got very serious very fast.
We got in the car and drove across the parking lot to the ER. They skipped us ahead of a waiting room that was standing room only. We have quite a few friends that work in the ER that were quickly there to console us and help out. The first big poke of the day was inserting the IV. He was so cute, so clueless. It almost felt mean, but getting him that IV was going to help much more than it was going to hurt. We held him and tried to distract him while he screamed and he fought, but they were able to get it in quickly. Pastor Dennis showed up right after this. Jace had calmed down, watching something on Rhonda’s phone and getting ready to receive some fluids.
Now it was time to run across town and pick up Bella from school. On the way to the school I phoned my father. It’s moments like these where you don’t really know what to do but you need your community, your people. My dad was calm and concerned. He is a rock. He was very reassuring and thoughtful and helpful. It was only a couple minute conversation. I don’t remember everything that we talked about, but I remember being so unsure and he didn’t try to reassure me. He was unsure with me. And that was more reassuring that anything else he could have said.
I picked up Bella from school and I told her in the car that Jace was going to be in the hospital for awhile. She told me that she wouldn’t kiss him so that she wouldn’t get sick too. I told her that she couldn’t catch what he had, but that it would be good to tell him that you love him and to give him a hug. He needs all the love he can get. We stopped off at home and grabbed the stuffed animal that he had asked for. She grabbed 2 more for him just to be safe. We grabbed an iPad and some lunch meat and headed back to the ER.
Bella got to go in and see Jace. She remembers being worried. She wasn’t scared. Just worried. She loves him. She gave him the stuffed animal he requested and the 2 that she picked out. He showed her his IV and the nurse let her listen to his heart beat. She thought he was so brave.
At this point, the lab came back from the initial blood draw they did when they got the IV in. His blood glucose level was up to 775. They moved us into another room to give him the insulin and take an x-ray of his chest. We weren’t sure why they requested the x-ray, but they said it was pretty standard when kids are in his condition. The doctor came in after the x-ray came back to check him out. On the x-ray they could see that in the upper left lung he had pneumonia. She listened to his chest and asked him to breathe deep, but there weren’t any signs of pneumonia. I asked her if it “looked like” he had pneumonia but there weren’t any symptoms, what that meant. She informed me that he indeed had pneumonia. Because bacteria feed on sugar and he had so much in his blood at this point, he had probably contracted a cold that rapidly progressed into pneumonia. Even though there weren’t any symptoms, it was already there. They gave him an antibiotic to deal with the pneumonia, 2 units of fast acting insulin to help with the high blood sugar, and made arrangements to transfer us to Sutter Medical Center in Sacramento. It is the closest pediatric unit with endocrinologists specializing in type 1.
While we waited to hear back from Sutter, we got results back from how the insulin was helping his blood sugar level. He had dropped fairly quickly to 225. By the time that the ambulance had arrived to transport him, he was all the way down to 180. So he loaded up on the gurney and was actually quite happy as he boarded something he loves to see on the road, an ambulance.
I went home, packed frantically, made sure that Bella would have what she needed to stay the night with friends, and picked up my friend Shawn who would accompany me down to Sacramento. He brought a thermos of coffee. He’s the best kind of friend. We talked about Star Wars and diabetes and the new King’s stadium and whatever else could keep me talking and not freaking out. Right before we got there I called Rhonda to see if we should bring dinner. The doctor was there at that moment so we rushed to the hospital instead of stopping for food. Shawn dropped me off at the ER entrance, and I navigated the ridiculously confusing halls of an unfamiliar hospital and finally showed up in the PICU to see Jace, happy and hungry.
All of the medical staff were confused. Usually kids are admitted with tons of horrible symptoms–stomach pain and coughing and vomiting and all around miserable. They kept asking if this was really the kid with those numbers. He is, we would tell them. He also has a lot of people praying for him. He had to get another blood draw to test all sorts of new things. Holding him down while he screamed at us again was so hard. Fortunately though, the new numbers showed that he had stabilized enough to eat, so they ordered dinner for him.
After dinner, they counted up the carbs in what he had eaten, something that was so foreign to me in the moment and seems like I can’t stop thinking about it now. They measured out the insulin and told us they needed to give him two shots in the stomach. They assured us that he would barely feel it. We assured him that he would barely feel it. When the shot went in, he screamed so loud. I lost it a little. I felt like I had lied to my boy. I believed them and I shouldn’t have. Now I know that he was over reacting. 7 days later, he barely feels it. But that night, I felt like I was betraying him, that the medical professionals were downplaying reality and that I had mistakenly sided with them. This kind of stuff messes with you as a father. It made me leery of everything the staff would say or do.
Shortly after this, he was allowed to move to the pediatrics wing. Most kids spend at least a day in PICU trying to stabilize, not eating and under constant watch. Jace came in at the right time though, before the damage could wreck havoc on his systems, and he was moved to room 2803–our new home for the next few days.
Jace actually loved this place. There was a huge selection of DVDs, an XBox, a playroom with scheduled activities and enough lego’s to keep a 5 year old plenty busy.
That first night, when we checked his blood sugar, he had gone back over 300, so we had to give him an insulin shot in his stomach again. The nurse tried to do it while he was sleeping, but he woke up. Holding him down to help it happen quickly, he screamed “Stop it! You’re not listening to me!” Seriously. Waking up to needles. This is the stuff that nightmares are made of. By God’s grace, that was the last middle of the night shot that we had to give him. He stayed low enough each night as the doctors started to assess and adjust his prescription based on the way that his body responds to the insulin.
The next day, Saturday, we met with a social worker, an educator and a dietician. We spent hours and hours learning all about diabetes, the different types, the diet restrictions (or lack there of), how to count carbs and calculate doses, what will need to happen with school, all with about a hundred pages of printed supplementary documents.
Jason and Angie brought Bella down to visit on Saturday. Jace loved showing off the room and the bathroom. He loved that the whole room was a shower. Bella thought that Jace was brave and that he’s like a super-hero. Jace was excited to see his sister and missed her while he was in the “hostable” as he calls it.
Each day, we learned more, starting to draw the insulin and administer the shots ourselves and calculate the carbs that had been kind of like a foreign language on Friday. Most of the days were spent in the play room or visiting with friends and family that came to see Jace. It was great to see people, but with such an exhausting amount of information that we were trying to understand, it was great that there weren’t too many people that came.
Some of our friends from church actually ended up in the room right next door to ours as they cared for their daughter/grand-daughter and seeing them and speaking with them helped us keep our heads on straight as we processed information.
One of the things that ended up really helping Jace overcome the fear of the pokes, the shots as well as the finger pricks to draw blood, was when we let him test my blood sugar. He was so giddy with excitement that he got to poke me and see my finger bleed and put my blood in the machine. It actually made him happy and was a huge turning point. He calmed down a lot after that and was able to, through nervous laughter, sort of accept that this was just going to be something that he had to do.
As we progressed through the weekend, reality really started to sink in and stress me out when I went out to get food on Sunday evening. I had left to go pick up some pad thai when I got a text from Rhonda that Jace was not going to eat the food the hospital had provided. They didn’t have a pediatric kitchen yet, so he had received the same food that all the adults received–pot roast with steamed carrots and a baked potato. He wasn’t having it. So the nurse agreed that I could purchase some food for him while I was out and bring it back as long as it didn’t go over 60 grams of carbs.
I called the burger place we had gone to, but they said that they couldn’t provide the nutritional information for their items. So I went to a KFC/A&W because it was across the street. Not ideal, but I needed something that he would eat. I asked the lady behind the counter if they had the nutritional info for their food. She pointed out where the pamphlets were. They were out of KFC pamphlets, but the A&W one was there. I decided to get him chicken tenders. But then they didn’t have chicken tenders because this A&W is connected to a KFC, so the chicken is all KFC with different nutritional info that wasn’t available. All of this is happening while going through the line multiple times, looking at the menu, googling for additional info, checking an app, and listening to the other customers, some who were living on the street, talk about getting their orders, and the mom with the girl that wouldn’t stay in the booth while she ordered, and the whole time I was so nervous for the first time in my life that I would get the wrong thing and really hurt my kid. That’s actually not true, but in the moment, with everything going on around me and needing to order for the first time, the pressure is so heavy. I ended up getting a side of macaroni and cheese and 2 drumsticks. I found the carb count info in an app that we had downloaded and headed back to the hospital.
All of a sudden, I had no idea had to take care of my own kid. I knew a bunch of theory, but when it came to the real world, it’s not just math problems. Life is bigger than balancing equations. It feels like every meal, every day, every night, like it’s this giant puzzle. And you celebrate when the pieces fit together because you found these pieces and they match, but you zoom out and it’s like the puzzle is infinite. There are so many pieces and you can’t handle it. So you zoom back in and you figure out this meal or this snack or this shot or what this number means, and that’s all you can do.
The next day, Monday, the doctor told us that he was confident in our ability to take care of Jace outside of the hospital, so as long as our insurance got worked out, the prescriptions got filled, and we were able to show all of this to the nurses on staff, we could be discharged. Because of an error at the pharmacy and an extremely high number of customers, we ended up not leaving the hospital until 5pm that night.
Monday night at 5pm is actually not the best time to leave downtown Sacramento. As we waited in traffic on I-5, we decided to get off the freeway, find a grocery store and get Jace some food. We took the wrong exit and drove about 20 minutes out of our way just to find a grocery store. Rhonda went inside and had a similar experience to mine at the fast food place. You pick up every item and search the nutritional information and try to evaluate what he will eat and what he should eat and what he can snack on versus eating at a meal, all while people are standing there, trying to get food from the shelf that you’re standing in front of. Shopping is suddenly much more stressful than it was before.
We got some food, checked his blood sugar, and got him some dinner to eat in the car on the ride home. We arrived home to a cleaned house and an awesome welcome home message from some friends.
Bella got to come home and we all got to figure out what in the world we were supposed to do with ourselves outside of the hospital. Each morning we would call the doctor with the blood glucose levels from the day before and he would adjust the doses accordingly.
Amazingly, Jace has been incredibly brave and has adjusted to this probably much better than Rhonda and I have. He is checking his own blood glucose level now–pricking his finger, pushing the blood out, and getting the blood into the meter.
Tuesday he stayed home from school. We were able to set up a meeting with his teacher and the administration and anyone that could help. His school, STREAM Charter, has been incredibly helpful in making sure that he won’t be any different than all the other kids. Rhonda and I will be going to the school during lunch for the foreseeable future to administer the insulin. His teacher even let him show and tell about his hospital visit and what will be happening from now on.
After his first day of school, we were kind of feeling like we were sort of getting the hang of it. It was hard and not necessarily predictable, but there is definitely a rhythm to this sort of care.
Then.
I.
Messed.
Up.
It’s so hard to even admit this. I mean, these insulin shots are so important. It’s my son’s life that we are talking about. But I messed up.
On Wednesday evening, when he gets his evening dose of long term insulin, I gave him his morning dosage (3 units) instead of his evening dosage (1 unit). I realized this about 20 minutes after I gave him his shot.
I panicked.
I lost it.
I couldn’t believe what I had done.
Who does this?
Who is this careless with their own son’s life?
All of this is going through my head. I know what I would tell other people if they were in my spot, but in the moment, you can’t think rationally. You just feel so horrible. Rhonda was relentless though. She kept encouraging me–it was just a mistake and we can figure it out.
We paged the on call doctor. He called back. He told us that we did the right thing to call in. We needed to give him enough carbs to compensate for the insulin and we needed to monitor him throughout the night.
We loaded him up with some fruit snacks and a KIND bar. I laid down with him as he fell asleep. I couldn’t handle it. I was beating myself up on the inside. It’s so hard. Mistakes aren’t always a big deal. This one was.
At 10pm we woke him up and checked him. He was low. 117. Not super low, but with the amount of carbs and insulin that we had given him, we knew he would keep dropping. So we tried to wake him up more. We gave him some glucose tablets. We bribed him with more fruit snacks. He was so sleepy that he couldn’t snap awake. I didn’t know what was going to happen. Maybe we were going to have to take him to the ER if we couldn’t get him to eat more.
Then Rhonda found the magic thing that makes kids wake up and stay up.
“Want to play Nintendo?”
He was awake and eating some grapes and fruit snacks and gatorade and playing Mario Party, all on a school night. We got another 30 grams of carbs in him and I laid back down with him again. I laid with him while he slept until midnight. I kept checking his breathing, checking for signs of life, knowing we were doing the right thing, but so mad at myself and scared for him that I couldn’t stop checking.
At midnight, when we checked him, he was up to 270. By 2 am, he was all the way up to 388. At 4, he had dropped again to 219. And at 6am, when I needed to check in with the doctor, there he was, right in the middle at 166.
When I called the doctor, he was encouraging. He told me that he was worried that we would need to take him to the ER. But we didn’t. We assessed the situation, modified what was suggested, and we hit the target. The doctor told me that everyone makes mistakes. He asked me to see this not as a mistake but as a learning experience. He thought that we learned well and took good care of our son.
We took him to school and actually ended up with what might be considered a perfect day on Thursday. He stayed in the right region at every check. Never high. Never low. Now we are double checking every shot. Just to be safe.
Now we are busy making sugar free jello, weighing most of our food, making good use of the measuring cups, doing a lot of math (mostly with fractions), and of course, reminding Jace and Bella both of how much they are loved and cared for, not just by us, but by a huge community of friends and family.
There isn’t really a good way to end a story like this because this story isn’t over. It’s barely begun. It’s been 7 days, but it feels like years. We know that with God’s help and the love, encouragement and support of all of you, we stand a chance. Thank you for your prayers and your love.
We appreciate it so much. More than you can know.
