Welcome to a piece of our sweet journey of life. This blog is about our family life-- my husband, my type 1 diabetic kindergartner, my spunky pre-schooler, my newborn baby girl, and myself! Enjoy!

Friday, September 19, 2014

Diabetes Mellitus Type I: An Inside Look at the Heart of a Mom (Part 1 of....)

I've tried writing down my feeling from how I felt the day that Michael was diagnosed with Type I Diabetes, and the days following.  Here's some of my thoughts.  I don't know how many different posts this will come in.  My mind is full and constantly racing as I think about our future and this disease. 

It’s not anything that I ever thought would happen to my child.  It wasn’t even on my radar.  I was just to the point of thinking there might be a problem and that something might not be right when he was continually wetting the bed and soaking his diapers mid-day, and drinking cups and cups and cups of water.   But it was August in Alabama.  And he was almost two.  And he was tall enough now to reach the water dispenser on the fridge and liked to “help” get water for his cup.  So, when I added those things together, I thought he might be getting hotter since he was playing outside in the heat, and if you’re hot then you need more water.  So I thought he was just thirstier due to the heat outside.  And I thought he was showing off his new skill of filling his cup with water.  And I thought the mood swings and behavior changes were due to the fact that his second birthday was coming up, and don’t they call it “the terrible twos” for a reason?


And then I called my mom.  And I told her about his wet beds.  And I told her about his 7+ cups of water each day and constantly asking for “more.”  I told her about his mood swings.  And I heard her voice change on the other end of the phone.  “I don’t want to worry you,” she said.  “But I think you need to call his doctor.  I’m not saying this is what it is, but it sounds like diabetes.”  This was on a Sunday afternoon.


It hit me hard and I knew.  I knew that’s what it had to be.  But I told myself “no big deal.”  I had an Aunt who has Type I Diabetes and she’s greatly successful and lives a happy life.  So I knew this disease was manageable. 


On Monday, I called the nurse line for the pediatrician office.  Within 20 minutes she called me back and told me to bring him in that afternoon.  I sat at my desk for the rest of that day and dreaded what the news might be.  I researched Juvenile Diabetes and overloaded myself with worries of what life would be like if he actually had this disease.  But then I kept telling myself “it could be worse.  It could be worse.  It could be worse.  Diabetes is manageable.  We can do this.”  I fought back tears, and tapped my toes incessantly.


That afternoon, I took a very lethargic boy to the pediatrician office.  Once we were in the exam room, he kicked and screamed at anyone who walked in the room.  I managed to wrangle a urine collection bag onto his diaper, and I held him close as they pricked his finger.  The doctor then appeared.  “His blood sugar is high,” she said.  “Too high for our meter to read.  That means he has diabetes.”  I began to cry.  So did she.  She gave me instructions to take him to a lab nearby for them to draw more blood so that they could get an actual number for his blood sugar.  She made sure I was okay to drive.  I nodded that I was.  I called my husband and bawled on the phone that he needed to meet me at the lab.  I knew I would need his help to hold down Michael when they drew his blood.  The doctor told me that I would have to come back to the pediatrician office after we got Michael’s blood drawn.  She told me that we’d have to take Michael to Children’s Hospital in Birmingham that night.  I asked if it would be an overnight stay.  She swallowed hard and said “It’s a several day stay.”  I cried some more.  She said “Be strong, momma.  You’re going to make me cry.”  The nurse, who was holding herself together better than either me or the doctor, said “You can do this.  You’re strong.  He’s going to be just fine. I promise.”  I nodded and headed out the door with a very sick child.

In the parking lot of the lab, while waiting for my husband to arrive, I called my coworker and friend, and then I called my parents.  I cried during both calls.  Michael sang to himself in the backseat and offered a cheerful “bye bye” to his grandparents on the other end of the Bluetooth connection. 


My husband showed up and the three of us walked into the lab. The two people behind the desk were so sympathetic.  Our pediatrician had already called them to tell them we were on our way.  Michael busied himself by playing on the rug in front of the door, and waving to each person sitting in the waiting room, and pointing out cars in the parking lot.  He was acting like a toddler—but inside, my heart was breaking.  Finally, it was our turn to go back.  I tried to distract him by pointing out the fish painted on the wall and waving his favorite blankie in the air.  Aaron sat in the chair and held down his arm and tucked his little legs between his own adult legs to make sure Michael didn’t kick or flail.  The two adults who were behind the desk were so kind to Michael and talked about what kind of birthday party Michael would have.  Fortunately, the blood drawing didn’t take too long, but it is absolutely awful to hear your child cry out in pain.  The man said he was putting the vials in his cooler and driving them straight to the bigger lab in Montgomery.  They said that the amount of time it would take the blood to coagulate in their Prattville office was a little longer than it would take for him to drive it to Montgomery and have the bigger lab get a reading on it.


After it was done, Aaron stood up and his pant legs were wet.  The little bag that was taped inside Michael’s diaper to collect his urine had leaked out.  We quickly laid Michael down for a diaper change so I could salvage whatever was left in the bag and put it in a specimen cup for the doctor to test for ketones.  Aaron rode with us back to the pediatrician office.  He could have driven himself.  I couldn’t have driven myself.


At the pediatrician office, Michael was more like himself.  He didn’t automatically scream anytime anyone walked into the room.  The nurse was able to test for ketones with the minimal amount of urine left in the collection bag.  The doctor came into the room and said that Michael’s ketone level was very high.  She said we didn’t need to wait until the reading came back from the lab for Michael’s official blood sugar level.  She gave us directions to Children’s Hospital Emergency Room.  She had already called the doctors up there and told them we were coming.  She said not to go home to pack a bag.  She said to drive straight to the hospital.  She gave me her cell number and told me to call her if we weren’t being treated fast enough or if anyone was rude to us at all.  I gave her my number at her request so that she could call me when Michael’s official blood sugar level was called in to her from the Montgomery lab.  Aaron picked up Michael in his arms, and we were on our way. 


We decided that although we didn’t have to stay long enough to pack a bag, we would have to swing by our house to get our dog, my thyroid medicine, and Michael’s birth certificate and Social Security card just in case.  We phoned Aaron’s mom on our way to our house.  She was watching our 7 month old and he would have to stay the night.  We made arrangements with her for Aaron’s car to be driven to her house.

While I sat in the car with Michael at our house while Aaron ran inside to get the dog, my meds, and our whole lock box so I could get Michael's birth certificate and social security card on our way to Aaron's mom's house, the pediatrician called with Michael's blood sugar level. It was 823.

We quickly pulled into my mother in law's driveway. Aaron took our dog inside their house so that they could later take him down to my parents' house. My mother in law brought out Michael's ninja turtles suitcase filled with some of his favorite toys. We were told by our pediatrician not to grab any diapers or clothes-- that children's hospital would have diapers. Arrangements were made for Aaron's stepdad and our church associate pastor and dear friend to go get Aaron's car which was still parked at the lab in Prattville. My mother in law held out Noah to us so that we could give him kisses and hugs before we left. It broke my heart to leave him. After all, Michael didn't spend the night away from us until he was over a year old. Noah was having to do it at 7 months. Fortunately, my mother in law had spare formula, baby food, diapers and clothes for him. So I knew he'd be good for a few days.

We hit the road running. I sat in the backseat with Michael. Aaron drove. Andrew, Aaron's brother, called us on our way and we talked to him through the car. I grabbed the crocheted baby blanket that i keep in the car and i shoved it in Michael's suitcase. I also grabbed a stuffed animal dog and put it in the suitcase as well. We found our way to the children's hospital emergency room and they had free valet parking for patients. What a blessing.

I registered Michael while Aaron kept him entertained walking around the sparsely populated emergency room. Michael's diaper needed a change. But we didn't have any diapers.

Soon we were called back to triage. Michael was uncooperative. The sweet nurses tried to offer him stickers but that didn't work. We figured a diaper change might help. We asked for diapers and explained that we were told not to bring any. Michael wore size 5. In the ER, the biggest size they had was 4. Michael fit. I was amazed.

After unsuccessful attempts at getting vital signs and weight, we were moved to an exam room. The exam room experience was a whirlwind. We had two nurses in there going over how much insulin to give Michael through an IV. We had multiple doctors (at least 3 at different times) come in and we had to relay our story to each one. Michael's blood sugar was checked again. It didn't register on their machine either-- it was too high. I told them we got a reading of 823 from the Montgomery lab. The nurses had to insert an IV into Michael's right hand. Two young men appeared at the door. I knew what they were there for. They were there to hold Michael down. Since Aaron and I were present, only one of the young men had to stay because Aaron & I would be able to help hold down our own son. Having had IVs during the deliveries of both my children, I knew what they felt like and I hated them. Everything in me ached for this little boy who had to have one. I held his feet. The young man held his arms. Aaron stood at his head and we tried to distract him. I would have taken his place in a millisecond. And I still would. Once the IV was in, and after they got some blood work, we could hold Michael, and his attitude was better.

We were given a pack of size 5 diapers. His diaper needed changing-- again.

We were told Michael was not in DKA. We were told that they were still deciding if they were going to admit him to the hospital. Later, we were told that they read the blood work wrong. Michael was in DKA and they would have to admit him.  (The next day, we actually found out what DKA was, and I understand now why they don't tell you what it is and how serious it is on the first day)

Eventually we got to move up to the special care floor. We had to be there since Michael was in DKA and had to have insulin through an IV. The nurse told us she'd have to draw lots of labs through the night. She said she could either stick him each time, or she could do another IV in his opposite hand and draw the labs that way. Although we hated to do this to him, and my stomach churned, we knew that it was best for him to get another IV so that he could get some chance of rest overnight if he could sleep through the blood work. We held him down again and this nurse did an awesomely fast IV. Thank you, Jesus!

That night, we watched Cars, Planes, and A Bug's Life, off and on while we held Michael on our laps in the recliner. He slept through most of the lab work overnight which was a blessing. Aaron and I switched up who would hold him in the recliner and who would try to catch 40 winks on the tiny couch. Aaron asked for scrubs for me since my shirt had been peed on twice. We knew we'd get clothes brought to us the next day from my mother in law. (It's quite humbling to tell someone where your underwear is kept, and where your shirts and sweatpants are). 
I changed into a scrub shirt and we continued our night. 

The next morning, Aaron ran down to the gift shop to buy a shirt for Michael, and a better-fitting shirt for myself.  He returned with a cute "Children's Hospital" shirt for Michael and a bedazzled Auburn shirt for me.  I love my husband through and through.  Michael's endocrinologist came to meet us.  He is so upbeat and polite and was astounded that I called diabetes "manageable" and he said "you're exactly right.  It is."  He asked why I said it was manageable.  I told him that I had an Aunt who was diagnosed with Type I as a child.  He says "Shut up!"  which brought smiles from everyone in the room.  He is a super great doctor and many many many people enjoy working with him and feel like they are heard and feel like their children are getting phenomenal care.  I get to join the ranks of those people. 

Michael finally got to eat a meal.  We had to have him out of DKA before he could eat.  At 8:00am, he was able to eat low-carb pancakes and scrambled eggs. 

My in-laws arrived with Noah and with changes of clothes for Aaron, Michael, and me.  I got to take a shower and felt so much better!  My parents arrived soon after. 

Shortly after that, one of the Diabetes Educators came in.  The grandfathers took Noah to the waiting room, my mom watched Michael, and Aaron, Claudia and I spent the rest of our day learning about Diabetes Type I and all of the rigors that go along with the disease.  We gave fake insulin injections to a patch of fake skin.  We tested out the blood glucose lancet-device and checked our own blood glucose levels.  We poured over the pamphlets and books and tried to be coherent when none of us had gotten much sleep within the past 24 hours. 

Around 4:00pm, we were moved from the Special Care floor to the Endocrine floor.  About this time, family members left and it was the three of us again.  We had a phenomenal view from our window of Birmingham. Michael liked to climb on the window sill and peer down down down at the street more than 9 stories below us.

The next morning, the endocrinologist came by again.  He told us we would get to go home that afternoon as long as the Diabetes Educator thought it was ok.  This was a day early in my mind but I longed to get out of there and get back to my son's comfort zone of his own house and own bed and own toys.  Shortly after the endocrinologist left, my in laws arrived.  They had dropped off Noah at my parents house earlier that morning.  My father-in-law kept Michael entertained while the Diabetes Educator came back and spent the morning teaching us more about this disease.  The Social Worker then came in to talk about their role in the "new normal" of our lives.  Then the nutritionist arrived and we talked about the diet needs of a toddler who loves carbs with every fiber of his being, is diabetic and allergic to strawberries. 

The Diabetes Educator brought us our prescriptions for all of the supplies Michael would need.  The hospital had a pharmacy, but they didn't supply insulin there.  So my father-in-law took the prescriptions for insulin and got them filled.  Aaron went down to the pharmacy to fill what he could of the rest of them-- the pharmacy was out of a lot of stuff.  The next day we would get the remaining prescriptions filled at our local pharmacy.  

We made special provisions for Michael to eat supper in the hospital so that we could get one last tutorial of checking his blood sugar and giving him his insulin before we hit the road for our hour and a half car ride.  We had a bag of ice brought to us so that we could keep the unopened insulin cold on our ride home.  Once in the car, Michael fell asleep nearly instantaneously.  He knew we were on our way home.

This is a good stopping place for now.  I'll post pictures of Michael's hospital visit soon. 

Thanks for taking the time to read this super long post of my thoughts as a mom.  I'm still overwhelmed at times with the relentlessness of this disease.  If I could bear this burden myself and remove it from Michael, I would do so in a heartbeat.  I'll continue to blog about our journey, if not for Michael's sake when he's older, then possibly for the sake of some other family with a toddler who is diagnosed.  There's so little out there for these young ones.  If I can share the little info we are gathering here and there, I would hope that it would help some other family out there who might be reading this.


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