Tuesday, March 30, 2010

A few days at the hospital...

That first night, the hospital staff worked to stablize my daughter who was in DKA Diabetic Keto Acidosis- a life threatening condition that affects people who don't know they have diabetes as well as anyone with type 1 diabetes whose blood sugar goes high enough for long enough to get ketones in the blood. We didn't stay terribly long that first night because the two little ones were with me and were very active, but we stayed long enough to drop off the clothes, and reasssure my daughter without making her sad with a long stay and tears and such. My husband was great with her and said we have things under control here. When I left they were smiling.
The next day I had an appointment with a diabetes educator. I was looking forward to that because if anyone needed diabetes education it was certainly me. She would teach me to count carbs and give my daughter blood sugar tests and injections, something I couldn't yet picture myself doing.
All went well the next day, they said her blood sugar was still high but it had come down from the 800 plus it initially was and was hovering around 300 if my memory serves me correctly. She had eaten regular hospital food including pizza for breakfast because hey it was offered and it was yummy. The juice box on her night stand didn't worry me at the time. She had always drank juice.
The diabetes educator was awesome because she was able to cut through everything, my worries, my guilty feelings, and the background antics of my 1 and 2 year old and explain exactly what diabetes is and exactly what I needed to learn before my daughter's release.
When it was time to test my daughter's blood sugar for the first time she prevented me from falling apart in tears by repeating patiently what it was I needed to gather up before I begin. the test strips, the lancing device, a fresh needle, and of course the meter. I couldn't find anything, and felt panicky. Then I got it all together and had to prick her fingers twice before I could get blood and she said ow.
I don't remember what her number was at that time and I wouldn't have been sure if it was a good number or a bad one.
Either me or my husband would be responsible for counting carbs and checking her blood sugar day and night until she was old enough to do it , then she would have to do it herself for the rest of her life. I immediately felt more sorry for her than for me. I would only have to manage her diabetes for a few years, she was stuck with it for life.

Saturday, March 27, 2010

The Diagnoses...

When my five year old daughter wouldn't eat the birthday cake at our neighbor's son's birthday party, I should have known something was wrong. At the time, September 2006, she had been very cranky but looking forward to going to that party and every kid loves cake, right?
She had also been moody off and on for months, but she was dealing with two younger sisters ages 1 and 2, and the two year old enjoyed tackling her daily. Did I mention she was thirsty all the time? Well it was Summertime- we all were thirsty.
There was no diabetes in my family and I only had a vague idea that it had something to do with sugar and lows so when she threw up the next morning on the kitchen floor ,although we couldn't get her to eat the cake at the party, I suspected a virus.
During the party the day before she threw what we thought was a tantrum, claiming she can't walk home from next door's party. I had held her hand and sort of dragged her home while she said I can't walk- I said yes you can- you put one foot in front of the other. A virus fit in neatly
with her behavior the day before. I immediately felt sorry that I hadn't known she was sick and went to give her a hug. That's when I smelled a smell I had smelled long ago. Not the usual icky smell you smell when anyone throws up- this was a powerful almost fruity smell that I had last smelled while working at an animal hospital a good 20 years earlier when helping the vet treat diabetic dogs.
After a call to the Dr. and a secured appointment for one hour later, I went on Web MD and looked up the symptoms of diabetes. My eyes watered up while I read the blurred vision(I thought she was trying to get glasses like her older sister) the thirst(It was summer) the weight loss(I thought she was just the thinnest of my four kids) the crankiness(I thought she was having sibling rivalry issues)
With tears streaming down my face I drove to the Dr's office hoping he would tell me she was fine and just had a virus. On the way there I asked her are you sure you don't want to go to Kindergarten today, my way of seeing how she felt. The girl loved school and would never have missed a day. IN the dr's office she went up on the exam table and layed flat out. Oh my god I thought- honey are you ok? No mommy I don't feel good. You have to understand this child of mine never stood still- not ever- even when she asked a question she did whirls and twirls.
The assistant thought it was cute she was laying down , the DR. seemed to think she had a virus.
I asked him what if it's not a virus, a leading question. He said what do you suspect Mommy? He calls all us mommies Mommy. I said what do you suspect? I wasn't going to mention diabetes unless it was the only way to get blood work done. I told him that I suspect that it's more than a virus and that she needs blood work done now. He said which lab? I said the ER. He looked a bit suprised but he's a very good Dr. who cares about his patients and he said ok.
My 12 year old daughter was at school, and my husband was at work and I didn't know if I was just being an hysterical mom due to lack of sleep, so I didn't call my husband yet. I went home long enough to pack her favorite stuffed animal and three juice boxes and snack bars for the kids plus milk for the youngest. Remember, I didn't know a stitch about diabetes.
In the ER, she insisted on leaning her head on the metal bar of the chair while the other two kids sat and bounced happily on my lap.
We waited a half hour with no-one calling us until she started to become less responsive to me. I left her where she was after looking over the other people in the room and carried the other two up to the front desk with me to tell them my daughter is in some kind of health crises- as I said this I began crying a little though I had promised myself I wouldn't. About 4 minutes later( Moms watch clocks,lol) they had her in the back with a nurse who was running a blood sugar test) Dear God let me be wrong I prayed in my mind.
The nurse looked terrified before she said anything. I said it must be bad news. She said your daughter's blood sugar is over 800. I said, What's normal. She said around 100 would be normal.
oh my God I thought- now may be a nifty time to call my husband. I said what can we do for her right now. She said she's send a Dr. around. Thank God she refused the snack bar and juice pack- I seriously thought these would be good for her.
On a gurney in a crowded hallway with two sleeping children on my lap a Dr. tried to have a Marcus Welby moment with me. He said I have some news for you. I thought (he's going to say diabetes and when he does I will not cry- absolutely not) He stared me full in the face and said Your daughter has diabetes. I said without skipping a beat- what do we do now. He said, wow you are calm. I began to get a bit irritated. I'm under a mountain of kids my poor 5 year old daughter is laying flat out on a hospital gurney- can we got on with this? Yes I'm calm- what Can we do now I repeated? We have to get her to a children's hospital- immediately by ambulance and unless you have a babysitter you can't come with her. Do I have time to make a call? I asked. I need to call my husband. Better make it quick he said.
On the phone I tried to sound brave about what was happening, and just stick to basic facts. He had been on his way to pick up his mom and Dad from Ireland to bring them around for a visit to our house, they were currently in NY for a visit with his sisters too.
He said he can be at the hospital in about 40 minutes. i said that may be too late she may have to ride up to the children's hospital without us the ambulance has already been notified.
About 40 minutes later, we were still waiting but my daughter had made friends with the nice guy who would be attending to her on the ride up to New Brunswick- a place I had never been to before and would have to mapquest it to see how to get there or follow the ambulance and hope for the best. In walked my husband- whew things were seeming a little better already. He told me to go home and take care of the little ones and meet my 12 year old from the school bus and that he would ride up and get her organized in the hospital and call me as soon as he knew something.
That was tough seeing her go, but I knew it would be best. We spoke after they arrived at the hospital- he told me she was doing fine so far and that he would stay with her and that I should come up tommorow morning. She's likely be there a few days and he would do a good job with her I thought while I took care of the other 3 at home. A few minutes after dark he called to say that he had to go looking for a clothing store because she had wet the bed despite his repeated requests to the nurse for assistance in getting her to the toilet on an iv drip. She refused to wear the hospital gown. I'll be right up with her own clothes i said. You stay with her.
The trip up there was slightly terrifying. The city of New Brunswick is by no means NYC but if you ever followed Mapquest directions in a city in the dark with three kids in the car- and you were in a hurry then you know what I mean.
The hospital was a huge lurking structure and there was construction going on all around it. I had to pass it three times before I finally just parked at a meter about a block away.