Wednesday, August 12, 2009

If you haven't heard . . .

Last week turned out to be much different from what I expected. A week ago today we took our son Caleb to the pediatrician for what we thought was dehydration from having a 24-hour stomach virus. We found out that he has Type 1 Diabetes. His blood sugars spiked around 1100, he was severely dehydrated and was in Diabetic Ketoacidosis, which means that his body was pretty much saturated with blood sugars and the throwing up was an attempt to get rid of them. He was a very sick little boy. The pediatrician put him on an ambulance to the ER so they could get IV insulin started and then he was med-flighted to Children's Hospital in Little Rock. He was so dehydrated that it took forever to find a vein that would cooperate. He was semi-conscious, had slurred speech, and was occasionally disoriented to his location and to what was going on.

Just one week ago today.

I'm copying the email updates that I sent to family members. I know several of them were forwarded on to others, so you may have already read this. If not, here's our story of Type 1 Diabetes.

Wednesday night/Thursday AM

It's about 4:00 AM. We've had a rather uneventful night compared to yesterday, but we still have a way to go. Caleb's blood sugar is down to a little under 300 after spiking around 1100 yesterday afternoon. They'll keep monitoring his medication and bringing it down before we leave PICU and get to the floor. After that, I'm not sure exactly what will happen, but I know that there will be at least two days that are patient education.
Caleb is doing better although he's still pretty groggy. He's more awake and lucid than he was yesterday but he still doesn't get what all is going on. It's never fun to see your child this "out of it," but he's nowhere near where Daniel was when he had his seizure episodes so this seems kind of pale in comparison.
Dr. McAdams (our pediatrician in Searcy) stated pretty certainly that this was Type 1. He said that someone Caleb's age wouldn't get readings that high with a beginning Type 2. It has seemed unreal to see this develop so quickly, but after hearing people here talk, this is actually quite typical.
I can't use my cell phone in the room, but I'll try to check in through email as much as possible.
Please pray that Caleb's blood sugar will continue to go down until it gets in to normal range. Please pray that there will be no permanent side effects from this much of a spike. Please pray that he will be completely lucid by the time we need to start learning about how to manage this. I'm glad he likes to cook and help in the kitchen. I think that will help me see this as more of a creative challenge than a list of food rules to keep.

Thursday afternoon

Well, today has not been fun but it has been much better than yesterday was. Caleb's blood sugar has been slowly coming down and since mid-afternoon it has consistently been in the upper 100's and lower 200's. One reading was as low as 139. The primary doctor decided that clear liquids would be OK for tonight so as a type, a MUCH happier Caleb is eating a sugar-free popsicle, sugar free jello and he has already finished a small carton of apple juice. We're still monitoring his blood sugar every hour. Hopefully everything will continue to improve.
Of course the staff has been wonderful. At Children's, that goes without saying. It has also been wonderful to have a few visitors and Caleb was excited when he got a gift and balloon from the library crew. He is still very weak. Please pray that his blood sugar will continue to come down and that it will be easy to regulate once we move into that stage of things. Please pray that his strength will increase. It exhausts him to try to stand up. His fluid levels are still kind of "off" so although he's very aware of everything now, he still seems rather drowsy and his speech is sightly slurred. I've been reassured that is temporary, but it would be nice to know that. Please also pray that he will be able to rest and that the cathater can be removed. It's driving him crazy, but there's no other option right now.
Thank you so much for all of the prayers and calls. I can't have my cell phone on when I'm in the room and I've barely left today. I promise I'm not ignoring anyone who has tried to call or text. I just can't get to it right now.
Thank you again for just being who you are.

Friday morning

We're on day 2 in pediatric ICU, but he's much better this morning. He was finally able to have some clear liquids last night and his blood sugar has consistently remained around the low 100's -- much better.
Later today -- probably after lunch -- we'll transfer to an intermediate room. At some point we'll start 2 days of patient education before going home to our new life. Caleb has been a trooper. He was so sick and disoriented when we got to the hospital. His breathing was shallow and he had to be reminded of where he was and why he was here. Last night he finally really slept. Real sleep with real, slowed breathing and this morning for the first time his speech isn't slurred. We still have a way to go, but we are definitely on the right path. The caregivers have been wonderful, but I wouldn't expect anything else from Children's. It's a wonderful place. I still don't know exactly how long we'll be here, but it's the only place I would want to be to do this.
Short visits later today and on other days would be fine. Caleb is feeling much better although he's still very tired. Thank you to everyone who is praying. I know they are being answered.

Saturday AM

Yesterday was a day full of improvement. I think I mentioned that Thursday night Caleb was finally able to really sleep for the first time. His breathing was initially very shallow but it's much better now. He slept through most of yesterday and hopefully he slept well last night. Keith stayed with him overnight so I could come home and sleep here. I think it helped Daniel for me to be here too.

Caleb's blood sugar levels have consistently been in the low 100's for the last 24 hours. He's on an IV insulin drip, along with several other IV's to help normalize some fluid and mineral levels that got out of whack when his sugar spiked so high. I had a couple of emails from Keith last night about the IV situation. Initially, they had to put them in his thumb because his veins weren't cooperating anywhere else. After I left yesterday, they wanted to move them to a more typical location. It was still hard to find veins that would cooperate so it took a while. I know that was hard for Caleb go to through (he already has several nice bruises from the ER attempts to find veins) but after it was over, Keith emailed and said Caleb was sleeping again.

He has been moved out of ICU to a "step-down" room around the corner. Our next step will be to go to a regular room and that's when we'll start 2-3 days of patient education. I still don't really know exactly how long we'll be there. I can use my cell phone now since we're out of PICU, so if you would like to stop by please call first. Thank you again to everyone who has stopped by or sent a card or gift.

One thing: Tuesday, August 11th is Caleb's 12th birthday and it's very possible that we'll still be in the hospital. It would make him so happy to be flooded with cards. (He usually starts asking if he's gotten anything in the mail in July. HA!) Yesterday, I checked my Facebook page for the first time and when I saw all the messages that people left for and about him, I read them to him and he was smiling and trying not to cry.

He has been such a little trooper through all of this and he's been through so much these last few days. On Monday, he was an 11-year-old boy enjoy a day at Magic Springs with Keith and Daniel. Tuesday he started getting sick and Wednesday he was being med-flighted to Children's. Although that seems like a crazy and fast change, I've heard several people's diagnosis stories in the last few days and they're all very similar. It's crazy that this can -- and does -- hit so hard and fast.

People ask what we need. We need prayer. Please pray for continued improvement, especially as we start the transition from an insulin drip and liquid diet to real food and trying to monitor things through shots. I don't know when that will be, but it's never too early to pray. Please pray that he will get stronger every day. He asked yesterday when he would be able to get up and walk and I have no answers for him. We also need prayer for the rest of us. It will get more complicated to juggle things as we get closer to the start of school and we may need some help getting other children to where they need to be. Daniel would probably appreciate hanging out with some friends and getting to just play for a while.

What we need most has been with us the whole time: this has been another time when I've wondered how non-believers make it through life. As hard as all of this has been, I know that God is right there with us. In the emergency room, during the helicopter transfer, in ICU -- the "peace that passes understanding" has been my constant companion. I don't understand all of this, but I don't have to. God is with us and he cares more about my son than I do. That's what matters.

Thank you all for being praying, caring people.

Sunday morning

Caleb is so much more himself today. He's talking, smiling, and even feels good enough to be whiny at times. :-) Yesterday they took him off of the insulin drip and we've begun learning to calculate insulin needs for injections. Although it's not much fun to do the finger pricks and injections, he is very cooperative. He knows how sick he was and seems to really understand that this is part of daily life. I know that we still have a lot of learning and adapting to do, but we're getting there.
Today's plan is more learning about daily life with Type 1 diabetes and keeping it manageable. They also plan to take out the catheter today, which will give him much more mobility and -- hopefully -- less fear of moving around. It's limited his ability to move much at all and 4 days of lying in bed isn't good for anyone.
We found out this morning that our nurse tech is Sam Middleton from Searcy and he graduated from Searcy High with Becca. Our overnight nurse is also from Searcy. His name is Justin I think Caleb likes having male caregivers. They're a little more sympathetic about the catheter than the women are. :-)
Anyway -- we're definitely getting there. Still have a lot to learn and adjustments to make, but we're getting there. Thanks again for all the emails and phone calls and words of support. We love you all.

Monday afternoon

Dear family and friends --

It's Monday evening and we are finally home -- just in time for Caleb's birthday tomorrow! We got home about 4:30 this afternoon after a day of last minute instructions and visits from family and friends. I know we have new habits and practices to put into practice, but thanks to the excellent teaching team at Children's Hospital I think we all feel prepared.

Caleb is doing so well. He still tires out easily because he was so sick, but he's back to being his usual talking, joking self. It's good to see that he is grasping all the new knowledge too. Don't stand still too long or he may try to take your blood and test your sugar levels. :-)

Thank you all so much for the calls, visits, emails, and mostly the prayers. Each day I could see the improvements in the areas where we asked for prayer. I don't know why I continue to be amazed when God answers prayer so directly, but I do. He is so good to us.

You all mean the world to us. Thank you for being our family, whether physical or spiritual. We are tremendously blessed.
If you want to learn more about Type 1 Diabetes -- which is different from adult onset or Type 2 -- please visit the websites for the American Diabetes Association or Juvenile Diabetes Research Foundation. There isn't a cure, but it is manageable. It isn't caused by eating too much, having a poor diet, or not exercising enough. It is caused when for some unknown reason, a person is born with a pancreas that just won't cooperate. For some people, their pancreas works well for several years. For some, it konks out within a few months of being born. If you have questions, please ask me. I'm still learning a lot, but I'll be glad to answer whatever questions I can.

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