I mentioned in my last post that my daughter was recently diagnosed with type 1 Diabetes. Talk about a life changing event! Lots of folks have asked how we knew? What were the warning signs? I’ll share some of what we have learned.
First off, T1D does not occur due to weight, poor diet or unhealthy lifestyle. T1D presents itself at any age. So if one more person asks if Haley were to lose weight, would the Diabetes go away…I may scream. That is Type 2 and it CAN be avoided in some cases. Haley and I are healthy girls. We are built the same way, though she is five inches taller than me. It’s the Barnes female physique. We really have no choice in the matter. Nearly every Barnes woman I have ever met is sweet as pie and prides herself on being a healthy girl. There’s just a bit more of us to love:)
Haley just turned 13 last February. She is my Justin Bieber-crazy…five foot seven inches tall- softball loving girl. She is an introvert and is the exact replica of me at this age. She favors her father in many ways- but looking at her- she is definitely hard for me to deny:)
Haley had been complaining of different weird symptoms for about 2 weeks before her diagnosis. They were things like sore muscles. She said in gym class she felt like her muscles were locking up and she felt weak. In my infinite wisdom, I told her that since she didn’t exercise at home regularly, OF COURSE she would feel weak at school because her body is not used to working that hard! Aren’t mothers ALWAYS RIGHT?
Then she would say more and more that her muscles ached and she felt lightheaded. One Sunday Jason and I made her walk 2 miles around the lake where we walk the new puppy. That 2 mile stretch was the worst she had ever felt in her life. We would later learn why… but the most telling of symptoms was the constant, unquenchable thirst. We bought a case of bottled water on a Saturday. It was gone by Sunday night. Jason and I looked at eachother and said “we need to call the doctor about this- it sounds like Diabetes”…we never got that chance. Monday was Memorial Day. Tuesday she called from school with the same complaints- only magnified. She was seeing spots. Was dizzy. So thirsty. Mommy, can you please come and pick me up? I work 45 minutes from her school. I think I made it in 20. I just knew it was gonna be bad, and I was right.
Her pediatrician couldn’t see her until 2:30. This happened at 9:30. I didn’t feel as if I could wait an entire five hours for help, so I took her to urgent care, where they did bloodwork and a urinalysis. They were spectacular and saw is quickly- hence the urgent part LOL. The tests showed elevated blood glucose levels and protein/ketones in her urine. We left there with a diagnosis of Type 2 Diabetes. Haley cried for maybe a few minutes upon hearing of this diagnosis. We were somewhat familiar with Diabetes because my cousin, Regina, has a son who has Type 1. Wyatt was diagnosed around age five. We see them a few times a year, so we were familiar with terms like glucose, carbohydrates, test strips, insulin…pump. That’s about all we knew other than he needed to watch his carbohydrate intake and record all of that somehow.
Little did we know...
We visited our pediatrician the next day where they repeated the same tests as the urgent care the day before. Both tests were done each day while she had been fasting. The second days’ tests revealed even higher sugar levels than the day before. We were sent to the Emergency Room due to the glucose level and we knew we could see an Endocrinologist quickly. If we had tried to make that appointment on our own, we likely would have waited WEEKS for a new patient appointment.
We were told to take at least 2 days worth of change of clothes. I took that for Haley and myself, just in case she really did have to stay for 2 days.
While in the ER, they do a barrage of tests including an A1C which determines what your blood glucose level has been for the last 90 days. Haley’s was around 260. A normal person’s glucose level should be between 70 and 100, And by the way- we are no longer talking about Type 2 Diabetes thought that does run in my family…we are now diagnosed with type one. Full on- Diabetes-only-treated-with-insulin-injections. And life has pretty much changed ever since.
I have texted Regina every day since we were admitted to the hospital at least five times a day and as many as 45 times per day with questions only she could answer. What a Godsend she is. What an example Wyatt has been!
While at the hospital, Haley never complained and has never asked “why me?”. She started giving herself insulin injections from the very first day the hospital stopped the insulin drip. She has demonstrated more strength than I knew was possible. She must get that from Jason because I swear I would have dropped to my knees.
I did drop to my knees when Haley wasn’t looking. and asked God for guidance…While she was asleep…. When all the machines are going…monitoring anything from blood pressure to glucose levels…and it’s the middle of the night…you are not sleeping because the machines are too loud. Not sleeping because a nurse (God love them) is coming in every hour to check the insulin drip and her glucose levels, And you are not sleeping because the “bed” you are sleeping in is really a makeshift bed you make out of a cheap recliner…
you are not sleeping because you wait to hear your daughter’s every breath to make sure she’s still alive- even though you know she is…knowing she is in the best and most capable hands besides your own…
All kinds of things go through your mind from “how are we going to deal with this at home”….to please, sweet Jesus…give this to ME…take it from her. I have lived my life- and hers is just beginning…can’t you somehow just give this all to me? WHY HER?
Then you have the questions about her life later…will she be able to have a baby one day? What are the chances of her son or daughter having T1D? What about softball this fall? Can she play? What about these injections? How often? Can I do it myself? Do I have to go to school to give the injections? What about SCHOOL? Kids sometimes can be so cruel to one another….how is any of this going to work? HOW AM I GOING TO WORK? Will my employer understand?
Then you have the financial burden of this. HOW will we pay for the medicine? Does insurance cover this? And like it matters- because as parents we will beg, borrow. lie, cheat and steal if it ensures our children’s health. Luckily, Jason’s insurance covered much of it. Our co-pay was $200 for what we think is a month’s worth of insulin and supplies. It could be SO much worse.$200 bucks a month to keep my daughter well? Adjustments can be made to fit that into the budget. We don’t need all the crap we have. However- she needs medicine, and she will always have it.
The scariest part of this was the fact that Haley’s blood PH level was lower than it should have been. We were in the PICU the first night (Pediatric Intensive Care Unit) Normal PH level is 7.4, Haley’s was 7.2. Doesn’t sounds like a huge delta, but had she been at 7.0 she may have been in a diabetic coma. It is called Diabetic Ketoacidosis … think I spelled it right…or not!
This is the reason for her muscles hurting so much…her body was looking for sugar that it could not find…so her antibodies were searching for energy in fat…causing her muscles to ache. She had shortness of breath…more lightheadedness…tummy was hurting…
Meanwhile when this was happening 2 weeks ago, I told her that she was just going through a growth spurt! WHO is 13 and five feet, seven inches tall???? Of course it is a growth spurt.
Haley quickly returned to healthy PH levels overnight. We were taught the mathematical way to calculate her insulin levels based on the carbs she will eat. Sugar level minus 125 dived by 25. Then take the number of carbs she will eat and divide by 15. Take those 2 sets of numbers and add them together.
There is an app for that. LOL. We use it all day, every day. If you know me well, you know that math and numbers are so not my thing. Same thing for Haley! Thank you, Steve Jobs- for Apple. Because I use my iPhone and it’s apps every four hours of my life.
This diabetic thing is no joke, friends. She has had lows that are not low for me and you, but are low for her and it makes her feel as if she will pass out. She has highs that make her feel hyper. And meanwhile, I am texting Regina to ask for her wisdom. And each time I ask, she answers. She puts it in words I can understand. Basically, we are functioning as Haley’s pancreas because hers does’t make insulin.
God is good, people. Haley is the living, breathing, walking, talking example of His grace. Those nights in the hospital, I waited until she was asleep until I said my heartfelt prayers…Please, Jesus….help me find a way to keep her healthy. Pray for her doctors…pray for healing…and while on my knees on a cold hospital floor I thanked Him for the gift of both of my daughters…for my husband. And asked for His strength through this because I knew that of all people, even moreso than Haley, I would need it.
Through this, I have seen a different kind of Haley. I have always been proud of her. I came home from the hospital with a different kid. It’s almost like coming home with a new baby. We get up in the middle of the night to prick her finger and test her sugar level. We write it down in a log…the ones at 2:30 are awful. We are so tired we don’t know what we are writing. But she is a CHAMP. Doesn’t complain. Just goes about it like a little lady.
It’s with God’s grace I was blessed with daughters. There isn’t a doubt in my mind that He heard every prayer before T1D and He’s heard my prayers after T1D. Even though I begged for her not to have Diabetes, she does…There is no mistake- He answers when we pray. It’s just sometimes the answer to our prayer is “no.”
Next blog- I will elaborate on how life at home has been since she came home on June 1.