So last night I listened in to a Live Radio thingy put on by #DSMA via Twitter with guest Mike Lawson. It was a great listen, Mike has it going on with Youtube videos and blogs. The night before I joined the scheduled Wednesday night DOC chat via twitter also put on by #DSMA. Great interactions, questions and comments. I have not been very involved in the DOC in the last 5 years (since my first kiddo was diagnosed). I dabbled a bit in the CWD forums and have many FB friends that share diabetes successes and perceived failures but aside from that I havn’t been actively involved. I have read popular blogs like Kelly’s Sixuntilme, and YDMV but never became a follower or subscribed. I would just check in and see what was being said a couple times a week – or not if it was a busy week.
Early February I got a bug in my bonnet and decided I needed an outlet for my own frustrations, fears, hopes, and funny moments. Thus I started my own blog. Well really it was the third time I started a blog but since I couldn’t remember what the logins or user names or even the email address I used to open the other blogs I had to start a third. The other two are simply floating out there in cyberspace. I still have low expectations that many will find my humble little blog and it really doesn’t matter if others do as long as it brings me happiness and a sense of calm.
So why the word “Pressure” – well last night during a chat taking place during the live radio I mentioned my meager attempts at blogging. A few folks asked the address and I shared it. Now I feel like I should deliver something. Some humor, inspiration, knowledge, etc. (forgive the fragment) I’m not sure I have much to deliver right now but I have a story – well two stories. Last night Mike Lawson shared his story of diagnosis. Everyone has a story – I have two although they don’t really belong to me; they belong to my dear children and they will carry their stories with them for always.
I was a part time pre-school teacher at a church. A student in another class was diagnosed with Type 1. I didn’t know the student or the parents. I did sign up to make a meal. While making the meal I contemplated including a dessert but thought better of it since it was DIABETES. When I delivered the meal I assured her I didn’t include a dessert. The mom smiled and said thank you. That was the end of my involvement.
My ds (age 2.5) seemed more moody than he ever was. He was always such a happy go lucky kiddo. He also seemed a tad more thirsty and wanted milk when he used to ask for juice.
My ds was sleeping longer and more often and was more cranky than ever.
My ds gave up milk and only wanted water demanding it in increasing amounts each day. He fell asleep at weird times and slept long and hard. I admit I was patting myself on the back for having such a healthy child that liked naps, drank water and ate very very well. I was getting frustrated that my ds who was nearly potty trained over the Christmas break had regressed and was having lots of accidents and wetting through 2 pull ups a night. He also complained that his legs hurt (I thought growing pains) and his eyes hurt (although both times he told me this he was in a bubble bath).
My ds was still very cranky, very thirsty, very hungry and wetting through pull-ups constantly. On Feb 6th after he had wet himself during a nap I was giving him a bath. He laughed and played in the water and while he did so I thought to myself – “he is so skinny“. After the bath I called his doctor and told the appointments person I wanted to bring him in because he just didn’t seem right. When they asked how he didn’t seem right, I said he was sleepy and cranky and thought maybe a cold was coming on. The appointment was set for 10am the following day.
That night I googled “excessive thirst and urination”. Over 300 thousand pages of diabetes were returned. I was initially concerned but dismissed it since he was only 2 and was skinny.
At 10:15am the doc had him pee in a cup. Moments later she told me that he had sugar in his urine. She gave us a lab order to go get blood work and told us to go on with our day and she would call with the results. I walked down the hall and signed into the lab. I started to get scared. I had both my boys with me (my older son was 4.5), my daughter was in 1st grade so she was at school. I called my husband and told him to come meet me because I was starting to panic. Drawing blood from a scared 2 year old was absolute hell. I made jokes for him, hugged him and smoothed his hair while an all-out assault took place. Then we went to lunch, olive garden. He ate a full lunch portion of fettuccine Alfredo and four breadsticks. At 2pm the doc called and told us to go to the ER.
Do not pass GO, do not collect $200 just get to the ER.
I had to make arrangements for my daughter to go to a friends house then off to the ER. If I thought a simple blood draw was difficult, the multiple IVs were so very worse. I can’t recall what they said about his blood sugar levels but I think something over 900. He had massive ketones ( I didn’t know what any of it meant). They started him on an insulin drip. 45 minutes later I saw him turn very pale, his eyes sunk back, he was so sweaty. I yelled through the curtains to tell someone something was wrong. It seemed to take forever for anyone to come. I watched my dear boy start to shake but he was too tired to even open his eyes. Finally they came and using a large funky thing tested his blood sugar – 27. I announced – you were wrong he isn’t diabetic. The nurse looked at me with a sadness I will never ever forget. They gave him glucose and within a few moments my boy was back. His color was good, his eyes were back where they should have been and he was laughing.
I was reluctant to leave but I had to feed my older boy and check on my 7 year old. I picked up my daughter, fed both her and my son and then returned to the hospital. My husband and my ds had been moved to a room in the same ward as kids with cancer. (That was a wake up call over the next few days – after all I would get to take my baby boy home) My ds still had IVs in his arm and had been changed into the cutest little hospital gown. He was asleep. It was after 10pm and I needed my other two kiddos home in bed. I again reluctantly left my ds and husband to care for my other two very scared and confused kids.
That night I slept in my dear boys bed. It hadn’t been changed during the day and he had wet through his pull up the night before so it smelled of his tee tee – but not a normal tee tee smell – it was sweet. In the few months prior I recalled making jokes with my husband about how my youngest kiddo was my sweetest – even his tee tee and breath smelled sweet. I cried – No I wailed. I hugged his stuffed jaguar (his favorite) and realized he was probably sad not to have baby jaguar – even considered calling the neighbor over at midnight to stay with my other two kids so I could drive baby jaguar to the hospital so my ds could see him when he woke up. I didn’t call. I just laid there in a pee soaked bed hugging a stuffed toy and shook while silent tears ran down my face. The next morning I got my other kids ready for school in a fog. Dropped them both off and went to the hospital to find my ds jumping on his hospital bed. He had eaten, he was playing and he was beyond happy to see baby jaguar.
My parents who don’t live in our state happened to be arriving that very day for a visit. They came directly to the hospital to collect a house key from me. They would be home to take care of my other two kiddos. For the next 5 days I was taught about diabetes, about finger pokes, insulin doses, carb counting, hypoglycemia and hyperglycemia. They wanted us to check out after 4 days but I wouldn’t go. I didn’t want to leave the protective bubble we were in with nurses and doctors checking on us. On the fifth day they said we had to leave.
Over the next two weeks I stayed home with my ds. I didn’t want to send him back to the mothers day out program at the school where I taught and I didn’t want to go back to work. He insisted though. His first day back he walked into his class and told his 2 year old friends to “gather round”. He invited them to watch HIM take his blood sugar and they all “ewwwd” when he squeezed out his blood, put it to the strip then licked it off his finger. He has owned diabetes everyday since. We celebrated his 5 year anniversary of D Day on the 7th.
We attended CWD FFL conference in Orlando FL. Best time ever!
Me, my husband and my dd all took part in Trial Net. My middle kiddo was 5 and refused to have his blood drawn (remember he witnessed his brothers first blood draw and all the IVs – plus he was 5)
We were notified that my dd had tested positive (not a positive thing) for markers (what ever those were). We were told it didn’t mean she would develop Diabetes but it increased her chances. We declined the opportunity to take part in any studies. I have regretted that decision for some time but we were only 4 months into the whole D thing and still so scared.
Life went on – we did our best to care for our dear son’s diabetes. We held our breath regarding our dd’s positive tests.
JUMP WAY AHEAD to April 2009
April 18th my dear husband left with both boys to go cub scout camping. I was nervous since I was the primary diabetes care taker but my husband had his phone and was armed with all necessary diabetes supplies – plus it was only one night. That same morning I took my dd to run an Earth Day 5K. We had run a number of 5Ks together (really walk/run – we didn’t do the timed portion – it was for fun and fitness not competition). We hadn’t even finished the first mile before she complained her chest hurt. She looked so pale. I summoned a passing golf cart and we got a ride back to the starting line. She had gotten some water was feeling better and her color was back. I feared the flu – a number of kids in her class were out sick.
We went home, both of us napped. Later we went to see a movie and had dinner out. since the boys were out for the night I let her sleep in my bed. She fell asleep quickly but I couldn’t sleep. My dh didn’t get cell service were they were camping. I was a nervous wreck wondering what my boys night time numbers were. I was still awake watching dumb things on TV at 4am. Between 11pm and 4pm I watched my dd get out of bed to go potty and drink water.
I fell asleep around 4:30 – at 5 I sat bolt up and realized she was diabetic. I sat there telling myself I needed to get the spare meter and test her. I held an argument in my head – I told myself Id wait just two hours – let her sleep – after all it’s going to be a long day. For two hours I sat there telling myself I only had one child with D. At 7am I got up and made coffee. I put my cell phone charger in my purse. I tried to call my dh – still no service. At 7:30 my dd came down and asked for breakfast. I asked her to test her blood sugar first and explained she had gone potty many times the night before. She didn’t argue – it was normal for me to occasionally test her bg. She was never high in the past, sometimes she was lower than what would be expected of a non-diabetic.
She tested – 5-4-3-2-1 = 254. She stared at me with huge doe eyes. I asked her to wash her hands and retest. 5-4-3-2-1 = 257. She was only 9 and we didn’t tolerate expletives but I didn’t argue when she said “Shit I have Diabetes“. I hugged her and asked her to pack a bag to go to the hospital. I called our Endo’s oncall service, told her about the 257 and asked her to meet us at the hospital. Diagnosis confirmed 2 hours later. Ketones were moderate. They wouldn’t let my dd eat which made me angry because I knew that to get rid of ketones you need insulin, water and carbs. Her last meal was at 9pm on Saturday – they didn’t feed her until 9am on Monday. 36 hours without food. She still had small ketones on Monday morning but by early afternoon they were gone and I suspect they would have been gone earlier had they allowed her to eat. We checked out at 9pm on Monday – after all we didn’t need training – been there done that.
She stayed home from school for the week. She wanted to go but I wanted her by me.
She started pumping in August of 2009. She went back to MDI earlier this week – she needed a break from the pump.
Those are our stories. I hope I will only ever have those two stories to tell. Yet the results of my middle child’s Trial Net study sit 6 inches from my laptop and even though the type face is all the same on the paper the word “POSITIVE” appears to be in Bold. Again I hold my breath, say prayers, and watch.