Running with asthma

Well well well.  A blog I never really used.

Vivian still has diabetes.  It still sucks.  It still consumes a large portion of my life. 

I graduated from University.

I also had a 4th baby.

But really I don't want to talk doabetes.  Diabetes takes up too much of my life already. 

I want to talk about running with asthma.

When Vivian was diagnosed

I post on a mommy message board. When she was diagnosed that was the first place I went. I've been posting away with many of those women since 1999 when I was pregnant with Titus. Right now they are having to prune their data base. I went in and grabbed my posts about Viv, here they are.


12-9-08
My daughter was diagnosed with Diabetes

We were diagnosed within the past few hours. Somewhere around 8:30 pm on the 8th of Dec.

Yeah. I don't know what to say. I'm too tired to think really and my head is spinning.

12-10-08 3:59am
OK it's 3 am. I'm sitting here in the basement of the Ronald McDonalds house waiting for clean socks and underwear. At some point I'm going to have to go home and get some clean pants, though I have considered checking savers to see what they have.

Vivian is doing well. We caught this early. The ER doc back home was surprised her levels were so high yet she was doing so well. He transferred us immediately over to for treatment. We left Portola around 9:00 and were in our room in Reno by midnight.

She didn't have any ketoacidosis or any other complications from the high blood sugar, well other than not feeling well. So now all the stomach issues and everything else all make sense. All together they equaldiabetes. Each separate issue though is just whatever KWIM. If I saw them all again I would know.

The pediatrician here was also surprised because she isn't sick, she wasn't sick when I brought her in. He said he thought they missed something because she should have been. My baby girl is a medical anomaly. and Thank god or whoever is out there. Things could have been so much worse, but they weren't.

Everyone in town talks shit about the hospital there in ***, but I have never had anything but good care there. Sure it's a small town and they couldn't deal with Vivian at all, but they did see the issue and made sure she got timely care. I walked into the ER in **** a little after 8:pm. By 9: we were diagnosed and on our way to a place that could treat us. For an ER that is nothing.

So here's the thing. I would not have taken her to the ER monday night. In fact I pulled into the ER and pulled out again because it seemed so stupid to take my kid to the ER for a stomach ache. But she had been complaining about it so much, and I've always been scared of one of my kids dying from appendicitis. So I pulled in and then out. As I was leaving I remembered my friend Hillary who died of appendicitis. Her mom sent her to bed with some aspirin the night she died and she never woke up. Thank you Hillary maybe?

I'm tired and rambly, and waiting for clean clothes. I have finals this week. I just have so much happening so rapidly that I can't think straight.



12-9-08My daughter was admitted to the hospital
at 10 pm. I'm wide awake and terrified.

She was admitted with a blood sugar level of 716. She has juvenile diabetes. The nurses say we caught it super early.

She was complaining of a stomach ache and a sore throat. I'd noticed her peeing the bed more and she peed her pants a couple of times. You know I've complained about it on here recently. So I thought she had either Strep or Bladder infection.

I took her to the ER. I have 2 choices here in my town, go to the Ped, or go to the ER. It was 8:00 or so and I just thought I'd better take her in just to be sure. She walked in all cheery.

the did a UA and found sugar so tested her blood.

The sent us to the city for the peds ICU. We'll be here for a few days.


12-9-2008 7:00pm
716 is high. Her Hemoglobin A1C is 11.5 And the fact that she had no ketoacidosis is apparently remarkable. The ER doc was surprised to find her levels that high. When we got here she was good, right about 360. They gave her some insulin and she's had an IV drip since the first ER.

Right now she's sleeping.

They are thinking she's had it 3-6 months.

Yes everything that I've taken her to the Dr. for in the past few months have all been manifestations of this. The stomach aches and throwing up were the first symptoms she had. Then the increased bed wetting, which didn't really trigger anything for me, she's always peed the bed.

Nobody in my family has it, nobody in my husbands family has it. We just had no clue what we were looking at.

We are staying at the ronald mcdonald house. We'll be here all week becoming experts on diabetes.


12-9-08 7:17
I'm telling you. I took her to the ER last night expecting an UTI. Or maybe some strep throat.

I never in a millions years would have thought diabetes.

On a happy note, this will probably fix her peeing problem. Forgive me. I've slept 5 hours in the past 24 hours, and I haven't really eaten anything.
At least you can't fall out of the basement window.

6 months

and 1 day, but who's counting.

6 months, that's how long it has been since diagnosis. We have learned a lot.

Yesterday I went and picked up her new insulin from the Endo. We are going to try Apidra with syringes. Vivian says that the syringe hurts less than the pen does. The goal here is to get the insulin to match the food spike. The Novolog was missing the spike and her numbers were ellivated. The apidra is supposed to act faster and therefor hit the food spike faster.

Because of her age we are dosing post meal. We can't ever guage just how much she is going to eat before hand. We tried dosing her before her meals and then giving her the rest after the meal, but that meant giving her 2 shots at each meal. That sucked.

I went on amazon and ordered a case for the new insulin. I'm hoping it shows up before we leave for vacation on Monday. If it doesn't I'll think of something else. I got a free carry case from the Endo office when I was there, and that will work.

Score!

My niece was diagnosed with gestational diabetes. What a way to start off this post. GD is not a good thing. However she didn't have GD. They did give her a ton of supplies when she was diagnosed. She was given an acuvue aviva meter, 10 boxes of the multi-clix refills for the finger poker, and over 500 strips.

She brought them all to me.

I'm just giddy. It may seem like such a small thing, but it's huge.

I'm going to take the meter and strips and a few boxes of the multi-clix to the school. It will be enough to get them through to the end of the school year. One less thing to worry about.

As for my niece. She gave birth to a beautiful baby girl. She was a few weeks early and spent a week in the NICU. Both are doing well.

I am angry.

In fact I'm pissed the fuck off.

I have a 6 year old child with a life long illness that could possibly kill her. It could kill her in her sleep tonight, or tomorrow at school, or the next day on the baseball field. It probably wont, but it could.

Her friend told her: The die in diabetes means you can die. She came to me crying, worried that she might die. How do you explain that to a 6 year old? You can't. Or I can't. Because while it's not true that the die in diabetes means she could die. She really could die from this.

I have a 6 year old child who has to get 5 shots ever single day. That's 5 shots a day 365 days a year. That is 1825 shots a year. That doesn't include days where she gets more than 5 shots. She has to poke her fingers, her tiny little fingers, 10 times a day, 3650 times a year.

It doesn't stop her. Not for 1 second. Today at baseball I checked her blood sugar. The reading came back at 54. I gave her chocolate. she came back up to 99, I gave her a bit more chocolate. What I wanted to do was pack her in my car and run home. But she had a game to play. We can't let the diabetes rule her life, she has to play baseball, she has to play soccer, she has to be a kid. But I was so scared. I treated her and sent her back out to play.

So yeah I'm angry. I'm also scared. Scratch that I'm terrified. At some point your kids get older and you get to sleep through the night. But I don't. I wake up ever night to check her blood sugar to make sure she's not too low. If she's low I get her to sip some juice. If she's high I get her up to go pee.

We have a mini jansport that we carry everywhere. In it is: Insulin, needles, meter, fruit snacks, alcohol swabs, and glucogon. If she were to go into a diabetic coma I'm supposed to jab her with this glucogon needle. Will I be able to do so? I have no clue. I hope so. Every single time I leave my house I have to be prepared for the worst. I have no choice in the matter. http://www.type1parents.org/t1d/modules.php?name=News&file=article&sid=36

Denied

I'm not surprised, just disappointed. I don't know why I would think the ins company might actually have my child's best interest at heart. It is obvious that they don't give a flying fuck about the health of my child.

The denial states that the request didn't come from the special care center.

We are seeing the Dr. who saw Vivian at the hospital. She works out of a hospital in Reno. We got permission from California Children's services to continue to see her, and that she is a CCS approved provider. She is a pediatric endocrinologist, the only one in the area in fact.

The special care center, which I have not been able to get an appt for, is 3.5 hours away. I have called them and never heard back. it really pisses me off.

So I have to take her to a Dr. she has never seen, and wont see again for another year. I have to hope that this Dr. who isn't following her care will put in a request for an insulin pump. I spoke to the diabetes educator and she said that most likely they will, but like everything else I'm not holding my breath.

I heard from CCS

That's the durable medicine supply company. They are the people who will send us the pump. They have the order for the pump. They kicked it to Healthy Families. Healthy families then denied the claim and kicked it to California Childrens Services. They are the ones who should pay for the pump. We are supposed to know by tomorrow.

The strips saga continues. I called in the refill for the strips on Monday the 20th. I went yesterday to pick them up. The pharmacisist did not have them, he said he couldn't fill them because it had been too soon. WTF. no really WTF. He said that we filled them on the 1st and got 300. Um no I did not. He fucking yelled at me. Oh yes he did. He raised his voice and yelled at me that "to the best of my knowledge you got 300." yeah well look asshole, I did not get 300 strips on the 1st. I'm pretty sure I would remember that.

So I guess he had been working to get them covered when they wouldn't do it before. Apparently he did get them to cover them and filled the prescription. However he us that we couldn't fill them until the 19th. So we didn't know that he had filled them. We didn't go pick them up.

I'm going to see if I can find a mail order company that will just send me out 30 day supplies every month with automatic refills. I do not need to be yelled at.