Thursday, September 11, 2008

Running at 120%

Sunday night Riley had a stuffy nose. I gave him some Benadryl at bedtime. He seemed to be OK on Monday.

I didn't have to give him any medicine at bedtime on Monday. He didn't seem stuffy anymore. (Plus, he was thrilled that the tooth ferry would be visiting him for the first time.)

He seemed fine Tuesday morning. When he got home from school my mom called and said he wasn't feeling well. She checked his temperature and it was 99.9 While that isn't too high I told her to go ahead and give him some Ibuprofen.

When I went to pick him up I could tell he didn't feel well. Later that night I was sitting on the couch beside him. I thought I heard some wheezing. I went to the drug store and bought some Mucinex hoping it would help clear him up.

He went to bed about 9:00. He still wasn't feeling well but he hadn't had anymore temperature. I had already packed his book bag to go to school the next day.

At around 9:45 I went in to check his sugar. Something didn't seem right. It took a second for me to realize he was breathing differently. He was breathing very fast. His sugar was on the lower end so I woke him up to give him a few fruit snacks.

His breathing was really concerning me. I kept asking him if he was having trouble breathing. His answers varied. Sometimes he'd say yes and then he'd stay no. He was still half asleep.

I asked Michael to come in and look at him. He agreed that he looked like he was breathing too fast. Then, I noticed he was breathing really hard, like he was having a hard time catching his breath. Michael described it like he was breathing like he had just run a race.

My alarm was growing. I started gathering things together because I was pretty sure we needed to go to the ER. Then, Riley started crying, "I can't breathe." That was it. We left for the ER.

I rode in the back seat with him. He was still breathing hard and fast, but he wasn't gasping for breath or anything. The hospital is about 10 minutes away. When we were a couple of minutes away I realized that when he was talking he would stop after every couple of words and take a deep breath. I was getting really, really concerned.

As we pulled into the hospital parking lot I held his hand and prayed that he would be OK and the hospital staff would be knowledgeable.

Oh, did I mentioned that I checked his sugar on the way and it was 65. He drank a juice box and I made a mental note to check his sugar again in 15 minutes or so.

He has never been very sick. He's had a few ear infections but nothing serious since he was diagnosed. Not only was I worried about his breathing but I was concerned about how they would receive his pump. Would they want to take it off? Would they let me give him insulin myself?

As soon as I told the front desk why we were there they sent us back to triage. As soon as the triage nurse listened to his chest we were whisked back and Riley was almost immediately started on a nebulizer treatment.

He thought it was neat because the mask they used looked like a dinosaur. I thought he looked so frail sitting in that big hospital bed.

When he was in triage I mentioned to the nurse that his sugar had been 65 on the way there. Before I could finish she said, "I'll give him a popsicle or something. But, after the breathing treatment." Um, I don't think so.

I explained to her that he had already drunk a juice and that I just needed to recheck his sugar to make sure it had come up. Once he got settled in his bed I checked his sugar and it was 123.

In addition to a breathing treatment he also received a dose of Prednisone. When the nurse left I looked at Michael and told him that it was going to wreak havoc on his blood sugar. Since I'm a nurse I know that steroids can raise blood sugars in people who don't even have diabetes.

Thirty minutes after the Prednisone he was 293. I pulled out his pump and covertly gave him some insulin. I didn't want to draw too much attention to what I was doing. I didn't want anyone to try and stop me. I told Michael I wasn't giving his diabetes control over to anyone else. They could take care of the breathing and I would take care of the sugars.

Turns out they didn't seem to care. They never checked his sugar once while he was there.

After the breathing treatment they listened to him again. He was moving air a little better but it still wasn't great.

The dinosaur mask went on again and he received another treatment. For the first time in a couple of hours he wasn't struggling to breathe. Of course, through it all he never complained. He kept smiling and talking. Everyone kept commenting on how cute his Spongebob pajamas were.

They did a chest xray, an EKG, and blood work. He never complained, even when he had his blood drawn. When they gave him the Prednisone the nurse tried to chase it with some grape juice. I stopped her and told her he couldn't have that because of his diabetes. She brought him water instead. The nurse commented on how most kids fought it because it tasted so bad. Riley just swallowed it down without one complaint.

She turned to another nurse and said, "He didn't complain at all. He just took it."

I said, "He's used to doing things he doesn't want to because he knows he has to."

Saying it made me proud and sad all at the same time.

His chest xray came back clear. He was breathing fine and not wheezing anymore. The doctor didn't really have an explanation to what had happened. He gave him a dose of antibiotics just in case he had a hidden infection.

We were sent home with an inhaler to use as needed and a prescription for more antibiotics.

I got up every hour and checked his sugar. The Prednisone had him running in the 300 and 400s. He was getting a bolus every hour. His breathing seemed OK.

On Wednesday I thought he was on the mend and I went to work. Before leaving I gave him a dose of Albuterol just in case.

My mom called me two hours later and said he was wheezing again and having trouble breathing. Although it was too early to give him more Albuterol I told her to give it to him anyway.

I was at a meeting an hour an a half away. I made Riley a doctor's appointment for later that afternoon. My parents came and picked me up from the meeting. (I had ridden there in a van with a bunch of other people.)

Once at the doctor's office Riley received another nebulizer treatment. He was still wheezing but not as badly. The doctor wrote a prescription for more Prednisone.

After leaving the doctor's office I called his endo, Dr. M. I told her about the Prednisone. She told me to increase his basal 150%. My mouth dropped open. That was a big increase. But, I trusted her. She said sometimes kids on Prednisone needed to be increased 200%.

I couldn't quite do the 150%. So, Riley's basal is now set at an increase of 120%. While it made me nervous at first it has worked out perfectly. His total daily dose has increased from 12 units a day to about about 20 units a day. That's just crazy. But, He hasn't had a single low and his highest sugar has been 161. His sugars have actually been better on the Prednisone than off.

Last night I ran him at 100% instead of 120. I'll do the same tonight. I plan to send him back to school tomorrow with his inhaler in tow.

The doctors seem to think that this is a one time thing. I really hope so. One chronic disease is enough for me. I don't want to throw asthma into the mix too.


Colleen said...

Oh my - too much excitement for sure. But gee - you stayed so calm and so did Riley. You're good, I'm impressed.
Hope this is a temporary bump and Riley's back to himself, soon.

k2 said...

You did a great job, and so did Riley! I'm proud and impressed that you kept him on his pump, so many hospitals demand that pump users remove their pumps.
Will keep my fingers crossed that this is a one time incident.
You and Riley ROCK - BIG TIME!

Lisa said...

Oh boy! You guys are having a tough time. I'm praying that it was a one time thing and that everything is fine from here on out.

Keep us posted.

Lynnea said...

I hope it's just a "bug" going through him, and he'll be back to normal soon. :-(

Hospitals aren't the greatest places if you have diabetes. They really aren't trained all that well to manage it...unless you're actually being treated for it. I've known a couple that said the same as you..."you care for the injury, we'll care for the diabetes." And the hospital let them. But I think he was on shots.

Keep us posted!

Diabetic Diet Sample said...

I know that your love and care contribute enormously with your child's wellness, keep it up to win this battle.

Scott K. Johnson said...

How scary! Please keep us posted...

Major Bedhead said...

It is mind boggling how little attention is paid to kids with diabetes when they're in the hospital for something else. O was in for DKA - DKA!! - and I was doing 99% of her care. Ridiculous.

I hope Riley's ok. Good luck with the prednisone. Sounds like your instincts were right not to go that high on his basals.

Christine-Megan said...

Ugh, Prednisone! I tripled my TDD on that stuff. I was using 300% basal last time I was on it, but my doctor told me to leave my basal alone and double my bolus instead, as prednisone effects post-meal readings more, and that seemed to work.

You must be so proud of Riley!

TexasNeals said...

oh how scarey! i'm glad he's doing fine and that you both handled it so well. it broke my heart when you said, "he's used to doing things he doesn't want to b/c he knows he has to." that struck me in the heart. my daughter had a filling last month. apparently she felt it the whole time but didn't say anything?! i asked her why and she said that she didn't realize that it didn't have to hurt. she didn't say a word about it until we got home?! bless their little hearts......