Saturday, August 18, 2007

Diagnosis

Brenna's Story:

Toward the end of July last year we had a heat wave. Brenna had just turned 2 the month before. The weather was over 105 degrees for a full week. The kids and I were all hanging out at the refridgerator waiting to take our turns filling up with water. The temperatures dropped to a somewhat more normal summer temp. 90 - 100 degrees. I noticed that I was changing a lot of wet diapers so started to try and potty train her. She had just gotten tall enough to reach the water dispenser in the fridge all by her self. Usually she would fill a cup, dump it on the floor and play in it. I heard her filling up her cup and ran in the other room -- she was just drinking. Whew. Then I watched her fill up the empty cup to the rim and drink it all gone, not a drop spilled. That day I counted 12 diaper changes - as many as she had as an infant. The next day I had to work so my Mom was watching the kids. She said that it was strange how much she was peeing and suggested I look up stuff about diabetes. I looked on the internet and the only symptoms she seemed to have were the drinking and peeing. This was a Friday and my dad called me that night to tell me that mom was worried and that I should take her in to the doctor's office and get her checked out. That evening between 5 p.m. and 6 a.m. I changed a bunch of really full diapers. At 2 a.m. the diaper exploded. Not literally but it was so full it was like we had soaked it in the pool for twenty minutes and her bed was sopping wet underneath her.

Early the next morning I called the advice nurse and she got Brenna an appointment. I blogged a little bit about this last year here. The doctor we had the appointment with is Kaiser's Diabetes Peditritian in our area. I hadn't met him before and I felt like I got the brush off when I mentioned that I looked up the symptoms on the internet and that when it pointed to diabetes I brought her in. She was quiet and very "good" the whole time -- and wouldn't drink water while we were at the office. It took a while to get a urine sample and once we had it they did two tests: glucose & ketone. She had Moderate Ketones and no glucose in her urine. He told us she was dehydrated but didn't have diabetes, just give her more water. MORE WATER! Other than the doctors office she was drinking constantly. I told him that and asked him why she was dehydrated when she was drinking so much? He didn't have an answer but I was relieved when he said no diabetes I counted my blessings and took my daughter home. That night we went camping and ate a ton of marshmellows. She was having so much fun that day and Sunday that she didn't drink as much and I thought we were out of the woods (figuratively & literally).

Monday and Tuesday were heavy water drinking days and on Wednesday a friend suggested I weigh her diapers and keep track of the amount of water she's drinking and take her back to the doctor soon because there might be something else wrong. I called that afternoon to see if I could get an appointment with her regular pediatritian. Thursday at 3 p.m. Thursday while I was at work my Mom called me. Brenna was lethargic. Mom was having a hard time keeping her awake. She woke at 7 a.m. and went to sleep at 9 a.m. slept until noon and wouldn't really eat more than a few bites. She said that she thought Brenna could wait until the Dr. appointment. Mom dropped the boys off with one of my best friends and met me at the Doctor's office. We saw Brenna's regular Pediatritian. She took one look at Brenna, asked what was going on, and sent in a lab tech. The guy pricked her heel and put this little white strip up to it flipped it over and it was dark black. He kept flipping the strip over and practically ran out of the room. Dr.E came back in and helped us gather up our stuff and took us to a back room with hospital beds and had Brenna hooked up to an I.V. At that point she gave me a hug and told me how sorry she was that my daughter had diabetes. She said that there wasn't much that she could do at this point so she would be going to a Kaiser hospital in Sacramento - they had a bed but they needed a doctor that would take her. Then, we waited a while longer. They found a doctor but didn't have a bed. I didn't understand but held my daughter. Mom took off to go get stuff packed for me. I called my husband at work to tell him the news and he came as soon as he could get away. For an hour I held my sleepy girl in my arms and cried quietly and listened to the Nurse call Sacramento. I called my work and told them I was going to be out for a few days and I wasn't sure when I'd be back in. Al came in and sat with us. By now it was after 5 p.m.

At around 6 p.m. Dr. E came in and told us that Brenna needed to be in a hospital and that Sac was taking too long. She called an ambulance and they would be taking her to Memorial - across the street from my house. She was strapped into her carseat, her carseat strapped onto a gurney and I wasn't allowed to ride in the ambulance. We arrived at Memorial about 20 minutes after she did and I sat with her in the emergency room in a daze. Mom got to emergency around 9 ish? I don't remember much. We sat together and the doctors didn't do much other than bring her some diet 7 up. They did take x- rays and I think they gave her some insulin. At one point Brenna was acting like she was drunk. It was hard to tell, she was really happy, animated, giggled a lot, but when she started to slur her words. (Two year old words are hard enough to understand when they aren't slurred) Nurses and doctors at Memorial couldn't tell us about what hospital she was going to or what else was going on. Finally around 11 p.m. I get a call from my Dad telling me that she would be going to Santa Clara. The ER staff couldn't verify that (Kaiser & Sutter don't get along) but at Midnight we were sent by helicopter (after a few scary minutes I was allowed to fly) to Santa Clara Kaiser Hospital. It was the most amazing flight over the valley, over the mountians, to San Jose airport. It took maybe 25 minutes. I found out from the Helicopter nurse that Brenna's number was over 400 and that her number at 12:15 a.m. was 80. I thought that was good at the time. He explained that they'd prefer her BG to drop slowly so that she doesn't have a reaction. I have never (and will never) have such a short trip to San Jose ever again (I hope). Usually traffic is so bad that it takes 2 or more hours to get there from here. A short ambulance trip and we were in Santa Clara.

They immediately hooked Brenna up to 2 more IV's and put some other "stickers" on her chest and stomach. They took out the old I.V. and ripped off the tape. (It took us 6 months to get her to be O.K. with "stickers" again). I stroked her feet while these people decended on my baby like a pack of vultures. Later, they become friends, but at that point they were just taking care of business. I told her it would be O.K. everything would be just fine while she screamed. I don't remember what all was going on but it was over and she was asleep. At 3 a.m. I started on some paperwork and the night nurse told me some stuff. I told him I hadn't eaten since breakfast - I had no cash only my atm. I wandered around the hospital until I found the atm got to the snack area - no change machine. Back up to Brenna's floor and a kind nurse finds change for me. I go all the way back to the basement to the snack machines get a sandwich and eat only half. By 4 a.m. I curled up on a matress near Brenna and fell asleep. 7 a.m. they are poking and prodding my baby and I wake up to her cries. That first day was a blur. Little food and little sleep. There were a ton of people coming in and out of her room telling me everything would be OK and she'd be on a pump in no time (I had NO visual picture - the only pump I knew about was my BreastPump which I needed about that time- Brenna was still nursing occasionally). I watched videos and took notes and the day nurse must have thought I was going to be noncompliant because I refused to take her number. I don't think that I even left the room to go to the bathroom all day. Mom finally got to the hospital late in the day. I had just been talking to some lady, an administrator I think, who was telling me her husband's D-story. She was the only person who asked me how I was feeling. I told her the whole story (I'm sure it wasn't very coherent at that point) and she took my Mom aside and told her to get me out of the hospital and let me sleep. Mom took me to a hotel and went back to the hospital to stay with Brenna while I slept. I called Al & spoke to him for a bit and then crashed into sleep from about 5 - 8 pm. I called Mom to come and get me and I spent more time with Brenna. She was watching the Wiggles on her TV. She fell asleep and I went to sleep at midnight. I woke to somebody poking Brenna again. I was amazed that she didn't wake when they took her number. I asked the nurses to wake me before they do something to her so that I knew what was going on. My favorite chair

Over the next 3 days in the Pediatric ICU I learned a lot about diabetes and how to care for Brenna. I wanted Al to come and visit and learn but I knew he wasn't in a state to drive and it would be unfair to have him drive the boys here for and back (4 hours round trip) for a short visit so I called him to give him updates. DKA was scary but now past and they needed the room for somebody else so we were moved to a pediatric room that we shared with 2 other children and their parents. One of them left before the end of the day but overnight we shared the room. That first day in the Pediatrics wing I barely saw a nurse and I took care of her diabetes the whole day, carb counting, mixing NPH & Novolog, Lantus in the morning, everything. The nurse was trying to get us discharged that day but the doctor suggested one more night, just to be sure. I had to prove I knew what I was doing to two more nurses, on seperate occasions the next day and, finally at 2 on Tuesday, Brenna was discharged and Mom drove us home.

We've come a long way. One year and one day later.

6 comments:

Queen of Dysfunction said...

Holy crap that must have been one long and frightening experience. I couldn't imagine having all that going on with my child and not run into the ER swinging.

(Glad that you and she are doing much better one year and one day later!)

Christine-Megan said...

Congrats on one year, you're dong great!

Major Bedhead said...

My daughter was diagnosed around the same age, ten years ago.

Glad you're both doing so well on your one year anniversary.

Amberthyme said...

Thank you ladies.

Penny said...

Just think how far you've come in a year.

Amberthyme said...

It's boggles my mind how far we got in a day (after sleep). A week later giving my first solo shots while she fought and wiggled. One month later I had to relearn everything but the carbs when we got her pump. . . but oh, the freedom! I knew I was giving her the right dose, no more guessing about 1/4 units. I'll have to photograph that one to show my non-d readers how tiny and inexact that is! Pumping confrence stuff. It is truly amazing.