Sugar, Spice and Everything LIFE: July 2019

Some days I really feel like Jase having T1D has almost just become part of the routine now and then times like last night the very real fear of loosing him is brought to light. There is so much unpredictability with this diagnosis. How does one carb effect his blood glucose vs another, what time of day is it, will he be active, etc. So much guessing and if you guess wrong - it can be deadly.

During the day I don't seem to worry as much. Jase has been pretty great on telling us when he isn't feeling well and we can now sort of pick up on cues from his behavior. This is so helpful, we can test his blood sugar, or now, look at the Dexcom - and see where he's at. Night... night is different. High blood sugar is something to worry about if left high too long (what happened to him before his diagnosis came - Ketoacidosis - can be deadly), but low... low blood sugar if Jase is already asleep... this keeps me awake at night sometimes.

Jases blood sugar has been dropping after dinner for a few nights now. We spoke with his endocrinologist team earlier in the week and adjusted some things to see if that would help. I like to give changes at least a full 24 hours to see a change, so we were on this course of action. The first night of the changes he was at 201 at his bedtime check (we had given him a sack before he went to sleep to prevent a low). Scott and I leaned toward not dosing (we're supposed to give 1/2 a unit if between 200-250) because prior nights his blood sugars had dropped throughout the night, he wasn't at a dangerous level and based on a check a few minutes before it looked like he was on a downhill trend (We haven't received the Dexcom at this point). Im so happy we didn't dose him that night, based on what happened last night. Gut, God speaking to us, whatever you want to call it... it just didn't feel right to give him insulin at that 9PM check.

Last night was night two of the changes to medicine doses. Like the prior nights he dropped after dinner again. We gave him a snack, he went up higher then we'd like to see, but that's OK. Right now we are set to check him basically every three hours, so we check at breakfast, lunch (between lunch/dinner if he eats something) before dinner and then again around 9-10PM. (and the 2am check overnight). With the rise we knew we'd be giving insulin around the 9-10pm check if he hadn't gone down. We checked him at 9PM and he was over 250 (for him this calls for one unit of insulin). We dosed and continued to watch his Dexcom to see if he would lower and level out. He seemed to be lowering and so we went to sleep. Around 11:30PM Jase came in our room because his iPod was beeping - he was 83, red circle and double arrows down (Dexcom predicting he'd be at 55 in 20 minutes if we did nothing - not good). When the Dexcom shows double arrows any way we are to check his blood sugar with a finger prick. We did this and it showed the same number. Now, with the finger prick we can't see what way he's going, so we trust the Dexcom and give him some juice. His blood sugar went up as it should and eventually leveled out the rest of the night. Jase didn't fall back asleep until around 3AM. He wouldn't tell us what was wrong, but I think maybe sugar rush and he knows that was scary, even though I feel like Scott and I were calm, a beeping waking you up in the middle of the night is no fun!

All I kept thinking was THANK YOU GOD the Dexcom came yesterday and we put it on. Without that, we would have done everything the same, but wouldn't have checked him until 2AM - nothing would have beeped to wake Jase or us up. What we would have found at 2AM scares the *hit out of me.

After speaking with his Endo team this morning we have again adjusted his numbers. I'd like to say this makes me feel better, but honestly this is something we will always be adjusting. For now I am thankful for technology to watch over Jases blood sugar 24/7 during the times we can't. By the sounds of what his nurse said today, we'll hopefully be getting a script for a pump soon. I think we're all a little frustrated by what happened last night, because today could have gone VERY different.

All that said, as frustrating as this disease is, I am so thankful for today, for Jase breathing and playing and seemingly not phased by what happened last night anymore.

Stay Tuned...

HEADED HOME - June 26, 2019

For the past few weeks Scott and I had noticed some changes with Jase. His attitude had been all over the place (could have just been him being six), he was drinking even more then his normal amount of water - which is usually a high amount anyways- (we had been traveling since school got out so this could have just been from being in the sun) and lastly was him wetting the bed (this has happened before when we've diverted from our normal schedule). There were a few other things as well, but as you can see there were some VERY clear signs had we been aware of them, but they also could have just been life happening. For the sake of the whole story, lets back it up a bit...

Last September Jase had some of these same symptoms, like the increased thirst and bed wetting, that we brought up to his doctor. Per the doctors request he had us check his blood sugar when he woke up for two days. I still had my meter from when I was pregnant with Adison and Scott had one he had used from his brother a few years ago when he was having some light headed spells. We checked Jases sugar with Scotts brothers first and the reading came back at 300 something - we then noticed the test strips were expired so we pulled out my meter and used that. His blood sugar was perfect. Sigh of relief. We tested it the following morning and same, normal. Thank goodness, we chalked up the bedwetting to playing football and having a late sugary drink.

Back to the present...

The Saturday before is diagnosis Jase had woke up crying saying his stomach and head hurt. I did the normal mom thing, checked temp - nothing- and told him to drink some water and eat something to see if it would go away. Both subsided, but the stomach ache came back in the afternoon. Eventually we figured out he didn't think he had pooped the day before so I figured that was why his stomach hurt. Gave him some Myrlax and the day went on. He continued to complain about his stomach, but again, we were just thinking he needed to poop. He was very emotional Saturday, kept saying he was sick, just very odd things for a six year old to say. Both Scott and I at this point weren't thinking much more then the kids just needs to poop and he'll feel better. Besides the needing to poop, he was pretty much his normal six year old self. A little more emotional and such, but he wasn't feeling well, so we weren't concerned.

June 23, 2019

Our Sunday started normal: waffles for breakfast, picking up the house, kids playing/fighting, the usual. In the afternoon I started a project of cleaning the garage floors (does anyone have painted floors in their garage? I hate them and feel the need to have to clean them more then one should worry about cleaning the garage floor!) and Scott took the kids to the school to play baseball. Not soon after they left they all came back. Scott put he kids inside and came out and told me something was wrong with Jase and he wanted to take him to the ER. He said Jase wasn't wanting to play and acting lethargic. So I came inside to watch Adi and Scott took Jase to the Emergency Room. Scott had been updating me as they were checking things (at home I was googling his symptoms) and then the text came through and all it read was: "Diabetic".

Before I knew the severity of the situation I was already devastated. Not so much over the diagnoses at this point, but the fact that for two days Jase had been telling us he wasn't well and we had brushed it off. Soon after the text Scott called and asked me to find someone to watch Adison until we could get a grandparent to drive up. Jase was going to be transferred to Davis Children's Hospital in Sacramento, his sugars were high, he was in Ketoacidosis and diagnosed with Type 1 Diabetes. When I hung up with Scott I immediately called my friend Becci and somehow she understood me through my tears and came to get Adison. (Thank you God for friends who are like family) I packed the things Scott told me to and headed to the our local hospital where Jase still was.

When I got there Jase was on an IV drip of insulin and his blood sugar was already dropping. Andy, Becci's husband was also there with Jase and Scott, this was helpful to calm us all down I think! The ambulance got there shortly after I did, they got all his IV's switched and we loaded up. I was able to ride in the back with Jase and duding the ride he was in good spirits. His sugars were lowering and I think he was feeling a tad better. We arrived in Sacramento I think between 9-10pm. Jase was on the Pediatric ICU floor, and while the care on that floor was great, being there was heart wrenching. Over the night he would be pricked in the finger every hour and have one more IV put in. I don't think I have ever been so grateful that I knew we'd be leaving that floor with Jase and that being a T1D is no longer a death sentence.

Around 8am the next morning his blood sugar was in normal range and they had him set to get off the insulin drip and start receiving shots... and eat! Jase hadn't eaten since late afternoon Sunday so he was pretty hungry. Monday was a lot of emotions, for all of us. Jase was over getting poked pretty quickly and Scott and I we're pretty overwhelmed with all the information being thrown at us. By evening we were ready to be moved to the regular Pediatric floor and start giving Jase his finger pricks and shots ourselves. Over the next two days we basically got a degree in Type 1 Diabetes and I had given more shots then I thought I would ever give in my lifetime. Jase, well he was pretty amazing. Of course he was sad and overwhelmed too, but he handled it all so well. Kids are pretty amazing that way!

Wednesday evening we were discharged, headed home and headed into the whole new life. Driving home was similar to driving home when he was a newborn. I just kept thinking, how are we supposed to keep this little boy alive without the nurses and doctors. How will I know what he needs, what if I get it wrong. It maybe even felt a little more heavy than the drive home as a newborn because this time, his life is literally at stake. Scott and I are acting as his pancreas, giving him insulin and not too much because too much can be deadly. It's a lot to manage. Theres so many numbers involved, lots of measuring, packing of bags for outings, always having juice and fruit snacks on hand and his diabetic testing/inulin giving items.

A few weeks later we feel like we sort of have a handle on things. Numbers change often, any T1D knows this is a always evolving thing, but we understand a lot more now about how to adjust. School starting will be a whole new ballgame. Jase will adjust fine I think, he's so adaptable, it's mostly Scott and I, or maybe just me, who is so anxious about school. Releasing his care into the schools hands is going to take a lot of faith from me. Side thought: God, I hear you and I place this worry into your hands.

That Sunday - Wednesday was a whirlwind. I still am unsure how we all survived. Adrenaline, prayer, others prayers for us, nurses and doctors who cheered us all on, were patient with all of our questions and Gods unwavering love. We are so thankful for all the well wishes, texts/calls, card, coffee gift cards, gifts for Jase, etc. This isn't the first time we've been dealt a hard situation (read this post) and I know it won't be the last, but we have an amazing God who is always on our side, amazing family/friends who stepped up when we needed them and we could not be more blessed that Jase's diagnosis - though lifelong - is manageable and the medicine and science is always getting better.