Friday, February 6, 2009

Is this a joke???


Tuesday January 27th started out like any other ordinary day but it would end up being the day that changed the life of our family forever.

Elijah had a doctors appointment that I had been putting off for a while. I really did not want to take him in because I knew they would tell me the same thing they always tell me when one of my children is sick..."he has a virus." He had been complaining of a stomach ache and started wetting the bed about 10 days prior to that tuesday. He seemed to be soaking through his diapers quite frequently and seemed to be really thirsty and hungry but he has growth spurts and since he had gotten really skinny I figured he was in a spurt and maybe he had a UTI which was making him pee alot. So I finally got around to getting him an appointment and after a very long wait on a busy day at the doctor we were seen.

While we waited in the office he drank about 40 ounces of water!!! The nurse had not any sooner put on the little urine bag than he had filled it up and overflowed. He had been a little cranky and more lethargic than usual but I thought he was just not getting enough sleep. When the doctor finally came in the room (they had already done the urine sample) I could tell something was wrong. She asked me what had been going on so I told his story and then she told me his urine was abnormal. She said his sugar reading was 1000+. Being a medical person I knew what that meant and my heart sank...I replied to her..."WHAT??? are you kidding me...I thought he had a virus."

She said "He has diabetes...type 1 diabetes, he is very sick, its a good thing you brought him in" and then told us we were going to the hospital and she had to call the insurance company to see where they wanted us to go. In the meantime the nurse came in a checked his blood...of course the machine just read HI both times. She called the insurance company and then the enocrinologist to let him know we were coming. She let me drive him as long as I promised to go straight to the hospital with no stops. So off we went to the ER.

They took us right back and tortured him with the IVS and catheters, etc. His blood sugar I think was over 700 but no one ever told me exactly just that it was really high. He was started on an insulin drip and some other things to get his sugar down, treat his acidosis and rehydrate him. Eventually he fell asleep. The doctors told me that if I had waited a day or 2 more he would have ended up in the ICU much sicker than he was already...what a horrible mother I felt like, knowing that I almost did not make that appointment for him.

He had been through so much that day that he finally passed out, all of the fighting and screaming wore him out. Of course he woke up in the elevator as we were moving upstairs where he proceeded to have a horrific temper tantrum for the next 45 minutes while the nurse and doctor tried to talk to me (the doctor fianlly gave up and told me he would come back--smart man).

He settled down eventually once the TV was on. Then I look up and the nurse comes in and gives me a calculator. HUH??? She started talking to me about diabetes with graphs and then started doing calculations on the dry erase board...calculations...are you kidding me...my kid just got diagnosed with this lifelong chronic illness that could kill him and you want to teach me math??!!

She told me I needed to do all of his carb calculations and tell her how much insulin he needs...what...isnt that what the nurse is for??

I soon figured out that with Type 1 diabetes, the moment you or your child gets diagnosed, your life is different forever. There is no grace period with diabetes. No time to digest the information or the impact it is going to have on your life, the life of your child and the life of your family. You are forced into learning a whole new set of rules from the moment of diagnosis. Within 12 hours of his diagnosis I had 3 books on diabetes, a new calculator, a record sheet and a pen and then I was off...calculating carbs, calculating insulin, learning about adjustments and how to treat hypglycemia, hyperglycemia, how to deal with birthday parties, sporting events, playing at the park, etc.

The information is totally overwhelming...I can not imagine having no medical background and having a child get this diagnosis. There is no room for on the job training. If you give too much insulin, your child could DIE, if you do not give insulin your child could DIE. Those thoughts are very scary and anxiety provoking.

The first 2 days in the hospital, Elijah would have a huge temper tantrum everytime he had to get his sugar checked or have a shot of insulin...it was awful. I was totally exhausted from restraining him and keeping him from pulling out his stupid IV. After that it got a little bit better. We were kicked out after 3 days because they needed the bed and off we went, with a giant box of supplies and meds, 4 emergency phone numbers and alot of anxiety.

We have been home a week and life has been...different...He has good days and bad, but things fluctuate by the hour. Jonathan and I are learning as we go, not that we have a choice. He has highs that have made him sick and lows that have come close to being life threatneing but fotunately no major incidents. Toddlers are ecspecially hard to treat and have lots of variations so we have had to make several changes to his medications so far.

Alot of people do not understand what life with a diabetic child is like...some people do, those with chroniclly ill children can understand what it means to provide constant care to a young child. Everyday my heart is broken because I hate to see him cry and I am running out of unbruised places to stick him. I hate when I have to drag him out from under a table and hear him wimper that he does not want it to hurt. I hate the fact that he does not understand why he gets poked by sharp things at least 13 times a day.

I have not been able to write about this until now because everytime I try to I cry, sometimes about how much damage could have been done if I had waited, sometimes about the thought of what can happen to him if I let my guard down, sometimes I just cry knowing that he will deal with this his whole life and the complications he may face in a few years.

It has been a rough week but as usual God has been so good to us. He protected Elijah, gave me the wisdom to know that he needed to go to the doctor (eventhough I thought they would tell me he had a virus :), He gave us a great endocrinologist who stays in daily contact with us and has kept Elijah safe from seizures so far. We are blessed that our little boy is alive and that he does not have something worse than diabetes...it can always be worse.

Thank you God for your perfect plans.

There is so much to say...I have still not entirely digested everything but I can not write anymore right now...too emotional. Everyday gets a little easier so I will write again soon.

3 comments:

Rachel said...

Rachel,
This entry really opened my eyes to what you've been going through. I simply can't imagine...thank you for sharing your pain. I wish I could have been there for you.

~Rach

Aussie Therese said...

Rachel,

Our Tom was diagnosed in March. At the end of that year, I felt a need to write about it.

I take my hat of to you, writing so soon after diagnosis.

I know that when the initial diagnosis came for us, I was scared and felt guilty too about not taking Tom to the doctor sooner.

Looking back at the end of the year and writing about it, really helped me to see God's grace and help at a very low time in my life. I hope you will have the same insight sometime.

Therese

Alison said...

I am the mom of a type 1 daughter who is 14 (diagnosed at 10) and a son who is 10 with a neurodegenerative disease. I know the complications of dealing with multiple issues in a family. You are in my prayers. Hang in there.