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When Life Hands You Type 1 Diabetes: Part Two

Sharing part two of our daughter's Type 1 Diabetes and Celiac Disease diagnosis at eight years old. Read more on KaraLayne.com

(If you didn’t catch the first half of this story, make sure and start here).

“Your daughter has Type 1 diabetes…”

There was a split second where all four of us stood there – me, Jarett, the resident doctor, and his assistant. Perhaps it was the lack of sleep, but once my brain made the connection from what my ears heard I dropped my head into my hands and let out a deep breath as the tears started to roll down my cheeks.

“Is it terrible that I am crying tears of relief?” I looked at Jarett as I said it not knowing his current feelings. However, it took me only a second to read his face and know that he was feeling the same way. For five hours we had something so much worse tucked in the back of our minds so this felt like the biggest gift.

The resident doctor looked at me and said, “absolutely not. Because that is completely understandable based on what she could have been facing. Type 1 diabetes is manageable. Completely manageable.”

It was then a conversation about all that is happening with Blair and what to expect. That because Blair was in diabetic ketoacidosis (at this point Jarett and I had no idea what that meant) they wanted to move her to the ICU. The reason he gave us was that they had Blair on fluids, potassium, and were going to start insulin. That they needed to make sure she had more attentive care and in the ICU the nurse-to-patient ratio is 1 on 2 based on how often they had to switch and adjust things for her. It would be later and after digging into DKA (diabetic ketoacidosis) that Jarett and I would learn the real reason. The one doctors would never say out loud as to not alarm you when you are already scared and overwhelmed. 

Blair came into the hospital in DKA with numbers so bad that it was a miracle she was not in a coma (a complication of DKA) or worse. Her triglycerides were so high, the chart they use to measure them doesn’t go to that amount. Her abdomen was more prominent because of pancreatitis. Her A1C was 16.5%. The reason everyone kept telling us how strong she was the entire time is that she shocked everyone by her lack of symptoms. We were continually asked how long the stomach pain had been going on, if she had vomited, etc. They would assume it had been for a bit and would ask how many days only for Jarett and me to share with them that the first time she complained of stomach pain was less than 24 hours ago when we took her to the ER.

We finished our conversation with the resident doctor and he informed us that we would be moving up to the ICU shortly, that we should get comfortable because we would be there a few days, and that once we get up there we would meet her entire team working on her case. You know you are in deep when your daughter has a medical “team”.

Processing the news

I turned down the lights in the room as Blair continued sleeping. Jarett and I both took a deep breath and watched her for a few moments, trying to process what this all means for her. For us. For our family. But whatever we had to face with Type 1 Diabetes didn’t matter in that moment. Her diagnosis felt like a walk in the park compared to what we were imagining. And while it would take a bit more time to really feel the weight of normal life pulled out from underneath us, we took that moment to be grateful. Because it’s all we felt.

My phone buzzed and I looked at the screen… “I have a flight booked and will be there tonight”. I cried again. The relief I felt in that moment knowing my mother would be there to help with the rest of the crew so Jarett and I could be in the hospital with Blair was overwhelming. It was a weight lifted. Jarett then got on the phone to call Tanner and update him as I got on the phone to call my mother to update her. 

Sharing part two of our daughter's Type 1 Diabetes and Celiac Disease diagnosis at eight years old. Read more on KaraLayne.com

The Unit of Intensive Care

Oh, how I have a soft spot for the ICU at Vanderbilt University in Nashville. We were surrounded by the most amazing support for the 48 hours Blair was in there.

Once up there we were greeted by everyone working hard to help Blair get to where we needed her to be. There were lengthy discussions regarding family history and symptoms. 

Has anyone in the family had diabetes? “Yes, Type 2 and gestational.”

Has anyone had a history of heart conditions? “Yes, heart disease.”

Has anyone had hyperthyroidism? “Yes.”

Has anyone been diagnosed with celiac disease? “Yes.”

Have any of these cases been Blair’s age? “No.”

Between Jarett and I, we have quite a family history of health conditions. But never in anyone this young which was why we were so blind-sided. We weren’t even looking for signs of something extreme like diabetes. The conversations then turned to symptoms.

How long has Blair been complaining about her stomach hurting? “This past evening was the first time she had mentioned it.”

Have you noticed that she was experiencing dry mouth? “Yes, but not extreme so we were paying attention to her water intake to ensure she was hydrated enough.”

Have you noticed her getting up in the middle of the night to use the restroom? “Well, yes, but we assumed it was from all of the hydrating.”

Did Blair ever get sick and vomit these past few weeks? “No.”

The one thing we started to learn and were told by her medical team is that it takes a diagnosis of diabetes to then piece together the symptoms. Especially when there is no family history of someone this young developing it. Dry mouth, getting up in the middle of the night, fatigue – we saw it all, but we didn’t see it for what it was. Once at Vanderbilt, Blair tested positive for ‘Rhinovirus’ – a common cold. Again, she had no symptoms. However, her medical team believed that this is what set off the chain reaction internally. Because everything was already compromised, all it took was a common cold to act as a viral trigger to set everything off.

Sharing part two of our daughter's Type 1 Diabetes and Celiac Disease diagnosis at eight years old. Read more on KaraLayne.com

It was at this point that we started hearing more transparent information regarding Blair’s numbers and how bad things were, how important it is that we get her numbers trending in the direction we needed. We also continued hearing just how strong she is. For a lot of that first day in the ICU Blair slept. Her body was working hard to recover and Jarett and I had a lot of time to continue processing as well as researching and learning. If you know me, you know that I have two speeds – 0 or 180. I’m sure you can guess where I was at in the learning curve of type 1 diabetes.

By now my mother had arrived in Nashville and I found myself better able to handle all of the information being thrown at us without simultaneously worrying about everyone back at home. Jarett and I would take turns napping to ensure that Blair was never alone or that we didn’t miss someone from her medical team come by with news or updates. Despite all that Blair was facing with constant blood draws, IV bags, finger pricks, wires, and machines, we did our best to bring some normalcy to the situation. We watched some of her favorite shows, we played Uno and Phase 10, and she even got to enjoy “get well soon” cards from her cousins that Grandma brought all the way from Arizona. 

Sharing part two of our daughter's Type 1 Diabetes and Celiac Disease diagnosis at eight years old. Read more on KaraLayne.com

Blair was an absolute rock despite how much Dad and I would remind her that it was OK to cry because sometimes “things just suck”. Both of her arms had IV’s in them, she couldn’t go to the bathroom or feed herself, being woken up throughout the night for finger sticks and blood draws. It was a lot for anyone to take. She ignored our invitation until we were nearing the 72-hour mark of being admitted. We were watching a show together and I noticed her expression change. I stared at her for a moment and asked her what was wrong. She paused, looked at me with those big brown eyes that were now welling with tears. “I’m just so hungry”. She then broke down into tears and my heart broke. 

I turned to our angel of a nurse, Allison, and said “We have to make this happen now”. And I will forever be grateful for Nurse Allison and how she advocated for Blair all morning and by that afternoon? Blair had her first bites of food in days. And for just a moment, everything was a little better.

Sharing part two of our daughter's Type 1 Diabetes and Celiac Disease diagnosis at eight years old. Read more on KaraLayne.com

The power of prayer

I will never forget it. That evening I made sure to post an update about Blair on my Instagram stories. I wanted to make sure and say thank you for the prayers and well wishes sent our way and also to share what we were facing. My phone continued to buzz all evening long as more and more prayers flooded my inbox. Jarett and spent so much time reading through them, finding so much comfort from strangers on the internet turned instant family. We fell asleep that night overflowing with gratitude for the goodness of people.

The next morning we knew they would be coming in with updates on her blood work panels and where we were currently with numbers. We just hoped to have made some positive adjustments so we could know that what was being done was working. When Blair’s medical team came for rounds that morning Jarett and I listened intently. Numbers had dropped by the thousands overnight. They were showing so much improvement that by that afternoon they were letting us know they would be transferring her to the regular hospital wing. It would be there where we would go through all of the education and be able to discuss going home soon.

There will never be adequate words to describe how much it means when thousands of people are lifting your little one up in prayer. 

Sharing part two of our daughter's Type 1 Diabetes and Celiac Disease diagnosis at eight years old. Read more on KaraLayne.com

I snapped this as we were packing up our room and getting ready to be transferred to a regular room on the hospital floor. Our sweet Miss Blair hardly recognizable from all of the fluids, but that grin tells it all. She knew she was that much closer to getting back home.

The education of diabetes

The next 24 hours were spent meeting with the diabetes education team as well as the nutritionist. Blair would learn all about poking her fingers, injections, and how we were to manage it all. 

Cuddled up in bed with her while we waited for the specialists to come in, I told Blair that whenever you are given a trial sometimes it takes some time to see the blessing in it. I told her that almost 4 years ago I was diagnosed with gestational diabetes when I was pregnant with Brooks. I had never had it before and I remember being very frustrated that I had to deal with it. However, knowing what I know in tracking glucose numbers, counting carbs, giving injections – I now can see it for the blessing it is. I pulled her close and told her that I can now see the blessing. And it’s that experience that prepared me for this. That experience is what makes me feel so confident that we’ve totally got this.

She looked up at me and smiled. Those big brown eyes got bright when she said, “And maybe later when I am older I will find out my blessing with diabetes and be able to help someone else”. I pulled her close enough that she couldn’t look up at me, dropped a kiss on the top of her head as tears dropped from my eyes. I have no doubt about that.

Sharing part two of our daughter's Type 1 Diabetes and Celiac Disease diagnosis at eight years old. Read more on KaraLayne.com

When it feels like Christmas

We were on the edge of our seats when Blair’s entire team walked into her room to review things the next morning. I already had my speech prepared as to why we should be discharged because I knew it wasn’t just me who would be broken-hearted if we had to stay another day. Blair had her sights set on home.

Everyone greeted Blair along with her stuffed animals. Yes, these medical professionals who worked tirelessly for our daughter and other patients remembered the names of her stuffed narwhal and unicorn. And it made Blair’s eyes light up. 

They began with how much better her numbers were looking and that they continued trending in the right direction, but that we would need to do another workup at her first follow-up appointment to see where things were at. They went over medications, how much we would be dosing to begin, and things to look for. They then looked at Blair and asked, “would you like to go home today?” … I don’t think that girl has ever smiled so big.

It was a flurry of prescriptions, discharge papers, and packing, but within the hour we were walking out of the hospital. Completely changed by what we had experienced in both the darkest of ways and the best of ways. And all three of us nervous for the new normal we would be heading into once back to real life.

Sharing part two of our daughter's Type 1 Diabetes and Celiac Disease diagnosis at eight years old. Read more on KaraLayne.com

I believe in miracles and the power of gratitude

Throughout the past month, I have found that it is really easy for me to slip into sadness, grief, and overwhelm with our past life being ripped away from us. The ability to just run out the door to the next thing. Or to enjoy an ice cream cone on a whim. Normal, mundane things that in the hustle and bustle of life we take for granted daily. 

However, the minute I remind myself of the miracles and tender mercies we experienced through all of this? Suddenly, her diagnosis feels more like a gift than a burden. I believe in counting blessings and naming them one by one…

  1. I will forever be grateful for the fact that Blair’s stomach pain was strong enough to wake her up from sleep that night. Had it not, I can’t imagine the very different story this might be.
  2. Just a week and a half prior to being admitted, the hospital was only allowing one parent to be with their child. While I think it is absolutely criminal and that the world has lost its mind in so many ways? I am so grateful for the timing of things and that Jarett and I both were able to be with Blair the entire time. And that there wasn’t a disruptive scene made by an anxious mama bear who wouldn’t have taken no for an answer.
  3. I’m grateful that Blair’s endocrinologist who has Type 1 diabetes himself. He was diagnosed when he was 18 months old and grew up telling his mother that he would find the cure for diabetes. He now works on the front lines of the research.
  4. I’m grateful for a mother who would drop everything to be in Nashville for two weeks and help us adjust. Who also happens to be the one in our family with celiac disease was such a wealth of knowledge as we worked through a few changes needed in our home to be completely gluten-free for Blair.
  5. I’m grateful for the countless prayers said on our behalf. They carried and continue to carry us through this experience.
  6. I’m grateful for a business life that I have molded to fit into my family life and not the other way around. It is the reason I was able to be in the hospital without sacrificing. It allowed me the space to pour into Blair over this past month without feeling pulled in all directions. And that has made all the difference.
  7. I’m grateful for a daughter who is showing us all how to find joy in the midst of trials. 
  8. And I’m grateful to hear that signature giggle of hers once again. It’s the sweetest sound in my world right now.

 

 

 
 
 
 
 
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A post shared by Kara Layne (@thekaralayne)

Through this experience, we have learned very quickly just how incredible the Type 1 community is. We have met so many incredible people already and I am forever grateful for the knowledge and comfort they have shared as we have navigated this first month. I have no doubt that we will continue meeting many more Type 1 warriors who will inspire Blair as she thrives.

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