Friday, April 30, 2010

Another Update

The doctor said Matthew definitely needs to be on the steroid 2 more days.

I doubled his insulin dose (a rather scary thing) and his numbers have been much better. Until late afternoon.....he shot up to 275 again. Sigh.

Let's just hope the poison ivy goes away and stays away.

One sidenote. Remember when I said I would be honest and write what I was feeling whether good or bad. I've discovered I'm a total liar. I don't think I can be that transparent.

Yesterday was really difficult, with his numbers being so resistent to come down and the poison ivy getting worse. I cried myself to sleep. I considered writing about it for about 1/10 of a second. No way can I do it.

I don't want to get all of you depressed, too. And hey, I know the rough times won't last, so there's really no point in making you worry. Right?

Thursday, April 29, 2010

Diagnosis Part 4

POISON IVY UPDATE: Matthew's eye is better, but his neck, arm and back are worse. It's now spread to his legs. I'm going to call and take him to his regular doctor to make sure this is the right medicine. We gave him more insulin than usual this morning and his lunchtime number will tell a lot.

Now, on to the end of the diagnosis story.

First a little info for those of you who don't know much about diabetes. When your sugar goes really high or you get sick, your body produces ketones. They are found by checking your urine. They are like a poison to your body and can make you really sick.

When Matthew was admitted to the hospital, his sugar was at 400 and his ketones were large. The fix? Insulin and fluids.

Well, thanks to Justin, Matthew didn't mind getting the IV into his hand, but that doesn't mean he liked it. He really didn't want to go to sleep with the tubing still in his hand.

Our first night in the hopital, the nurse, Jennifer, was constantly checking Matthew's ketone level. A little before 10pm that night, she checked his urine once again and said his ketones had dropped into the moderate range. She told Matthew that was great, but he would still have to keep the IV in until the ketones registered negative. She said that would probably happen the next day. Matthew was pretty disappointed.

As soon as Jennifer left, I thought.....wait a minute. We are not going to accept that. We're are going to pray about this. Matthew and I have been learning in BSF about the importance of being specific in your prayers. That way you know when God has answered them.

So I told Matthew we were going to pray. We did just that and specifically asked God to remove the ketones before midnight.

So Jennifer comes in a little after 11pm and checks his urine. "Hmm....she says. "That couldn't be right. Let me check again." She checks again and.....NEGATIVE ketones. She could not believe it, but it was true. Negative! The IV was removed before midnight. How cool is that?!

I cannot tell you how much this meant to Matthew and to me. Seeing God work in such a powerful, specific way was completely amazing. I will never forget it.

Now, I have to confess, in hindsight, I don't know what in the world came over me....putting God on the spot like that with something the nurse said wouldn't happen. What was I thinking? What would I have told Matthew if God's answer had been no? Clearly, I didn't take the time to think it through, I just acted in faith.

It makes me wonder what my life would be like if I did that more often.

Quick Update

Diabetes sure doesn't stop Matthew from doing anything. While adventuring through the woods this past Sunday, he got into poison ivy. It's all over one side of his face and neck. His eye was seriously swollen. Sigh.

We ran him up to CareNow so he wouldn't miss much school and that doctor wanted to put him on steroids, but said we needed to check with the endocrinologist. Once we spoke with the diabetes nurse, we learned that steroids can make you insulin resistent. So we tryed a cream and decided to wait to see if that worked. It didn't and yesterday we finally gave in and started the steriod.

Now, of course, we have high numbers. Despite corrections, I can't seem to get him out of the 200's and he has a trace of ketones. (That's kind of a poison that your body puts out when your sugar is high and/or you're fighting an illness.)

I spoke with the nurse again and we have a plan, so that's good. We're pumping him with fluids, giving corrections and praying for quick healing!

Poop on poison ivy!

Wednesday, April 28, 2010

The Diagnosis: Part 3

Kevin made it to the hospital just before the endocrinologist came to talk with us. He asked us a million questions about my pregnancy, Matthew's health, our family history. You name it, we answered it.

He reassured us several times that we did nothing to cause this. It was nothing that I did or did not do during pregnancy. Nothing that I fed or did not feed Matthew. It was a virus. Who knew such a thing could happen? The short version is that the virus mimics your beta cells in the pancreas, which produce insulin, and tricks your body into killing off your own cells. The end result is that Matthew no longer makes insulin and will be 100% dependent on insulin until there is a cure.

Okay, back to the story. The doctor explains that he's going to admit Matthew to the hospital to stay for 5 days. (Turns out it was only 3. Yea!) Matthew was so upset at having to stay in the hospital. He cried and cried.

Until he got to his room. This child LOVED the children's hospital. TV, movies, video games. All that stuff that I never let him have. He was in heaven. And that was before he found the gift shop. Oh. My. Word. There was a little library at the hospital. An aquarium with an eel. Plus, they had different activities and visitors every day. Matthew got to meet some therapy dogs while we were there.

A couple weeks ago, when we took Matthew for his check-up, he was seriously hoping they would admit him. Great.

The actual hospital stay was relatively uneventful. Most of the time, Kevin and I spent with a diabetes educator getting a crash course in how to care for Matthew. All I thought I had to do was simply give him a shot. Boy, was I wrong.

We learned about all sorts of things. How to check his sugar with a lancing device. How to change that needle. When to check his sugar. Keeping him in range. How to treat when he goes low. How to correct when he goes high. Teaching us to count carbs. Learning what his carb-to-insulin ratio is. Learning how that ratio changes throughout the day. How to draw up the insulin. How to give the insulin. Where to give the shots. How to rotate sight injections. How to dispose of the syringes. We learned what ketones are. And how to get rid of them. What to do before exercise. What to do during exercise. We learned what to do if we find him passed out. Sigh. It was completely overwhelming.

But you know what? God got us through and He will continue to do so. There is one truly amazing thing God did that first night in the hospital. I will share that story soon and that'll wrap up this long diagnosis story.

Tuesday, April 27, 2010

The Diagnosis: Part 2

The doctor appointment started with Matthew hopping on the scale. Matthew had lost 9 pounds since his yearly appointment in the fall. And you know what? He really looked it. I think he must have lost several pounds in that last week. He looked very gaunt. As soon as Matthew's pediatrician saw his weight loss, he was concerned.

They checked Matthew's urine and his sugars were all out of whack. The doctor seemed confident that it was diabetes and called a children's endocrinologist.

Meanwhile.....while Matthew and I were waiting to hear from the endocrinologist, Kevin was battling a kidney stone. Yes, folks....when it rains, it pours. Kevin was upstairs in the same building having his own fun exam. He later met us at the ER. (And yes, he did pass that stone.)

Before I detail our hospital visit, let me just say those folks were fantastic! First of all, we didn't have to wait in the waiting room because the doctor had called ahead. When your child is really sick, that is a huge blessing.

Now, at this point, Matthew knew the diagnosis was diabetes. He also knew the fix was insulin. What he did not know was that you have to take the insulin through shots. Call me a wimp if you must, but I was not going to be the one to tell him that part. Quite frankly, I didn't want to do shots either. I was terrified to stick needles in my child. But when the doctor looks at you and tells you that without insulin, your child will die before the year is get over your fear of needles real quick.

But I'm getting ahead of myself. Once we got into his little ER room, Matthew popped up on the bed and was doing okay. Then the nicest woman you'd ever want to meet, Miranda, came in to talk with Matthew. I'm not exactly sure what her job title was, but I think she was a child life specialist.

She began by telling Matthew that she herself had diabetes. This was huge for Matthew. (And for me!) To see a happy, healthy person facing the same struggle meant a lot to both of us. Somewhere during the conversation, Matthew learned about the shots. You can imagine the tears when that realization set in.

But Miranda helped tremendously. She told Matthew that she began with 6 shots a day (at this point, we thought Matthew would have to have only 2 shots a day. It's actually turned out to be a minimum of 4.) Miranda now has a pump and told Matthew a little about that.

The best thing Miranda shared with Matthew was that she was once on a medical team that traveled to Africa. Diabetes did not stop her from adventuring through Africa and you know Matthew....that was just what he needed to hear. She was a blessing.

Miranda also talked to Matthew about what was going to happen to him while he was in the hospital. She began explaining how a man named Justin was going to insert an IV into his hand. Matthew was not exactly thrilled.

Then suddenly, the curtain was shoved aside and the funniest/coolest guy you ever saw was standing there. He had spiky hair and was busy making muscle poses while holding his medical kit. Matthew laughed and laughed. Then Justin grabbed cottonballs and started throwing them at everyone. Before you knew it, Matthew was in tears again, but this time the tears were from laughter. It was great!

All those silly antics from Justin meant the world to me. He was simply fantastic. And as you can imagine, he got the IV in with no problem. Must have been the magic freeze spray.....

More tomorrow.

Saturday, April 24, 2010

The Diagnosis: Part 1

So many people want to know how we realized something was wrong with Matthew. In hindsight, all the symptoms were clearly evident, but we didn't realize those signs were pieces of the same puzzle.

Puzzle Piece #1: Since late fall, Matthew had been drinking more, especially at night. He was constantly having to get up to go to the bathroom and even having a couple of accidents. (Something that had never been a problem before.) It had become a major battle and we simply thought Matthew was being defiant.

Puzzle Piece #2: Matthew was constantly complaining about being tired. He was happy to go to bed each night and never minded if I put him down early. (Boy has insulin changed that!)

Puzzle Piece #3: Matthew was eating a ton of food. It didn't matter how much I fed him, he wanted more. I don't think Kevin even realized how much Matthew was eating. But....

Puzzle Piece #4: He was losing weight. All his clothes were falling off him.

Our conclusion: It must be a growth spurt. He's eating a lot, but getting thinner because he's getting taller. He's tired because he's growing so much. That must be it. It actually turned into this big joke in our house. Kevin kept teasing me, saying that I had no idea how much teenage boys would eat. Matthew would jump in and play along. I laughed, but kept thinking....he's not a teenager, he's only 9.

Anyway...the symptoms didn't stop. Kevin and I talked about taking him to the doctor, but put it off because Matthew just didn't act like he was sick.

Fastforward to the week Matthew was diagnosed. That was a Friday. On Tuesday of that week, his wonderful English teacher sent me an e-mail. She was concerned because Matthew didn't seem himself. He told her he was tired and she was worried that he might be getting sick.

That was the confirmation that we needed. I called the doctor the next day and got an appointment for Friday.

Thursday morning, I was having my quiet time, really praying for God to watch over Matthew. I knew in my heart that something was really wrong, but I had no idea what it could be. I just prayed and prayed that it wasn't some type of cancer.

Right after praying, the thought "diabetes" popped into my head. Never once had I considered diabetes. It doesn't run in our family and I never had a reason to suspect it. I knew instantly that it was from God. I hopped onto the Mayo Clinic website and looked up diabetes. Matthew had every single symptom.

I am so grateful that God prepared me for the diagnosis. I knew exactly what to expect and that really helped when we were sent from the doctor's office straight to the ER. I already had a bag packed in the car and was ready to take care of our son.

I'll post part 2 of the diagnosis tomorrow.

A Fresh Start

As many of you know, I started blogging a few years ago to detail our adventures with homeschooling. It sure has been a good ride! And this year, Matthew's transition to school could not have gone better. He absolutely loves it and so do I. In the fall, we'll add history, but I plan to continue homeschooling math for another year or two. For now, rest assured that school is just fantastic.

The new adventure now is Type 1 Diabetes. Matthew was diagnosed in March of this year and though many tears have been shed, we're doing well. God is good and He's getting us through. The night of Matthew's diagnosis....well, I won't post the details right now. I plan to write a long post outlining the whole story. It's one that showcases Matthew's bravery and God's goodness.

Those of you who followed my old blog are going to be shocked at how often I update this one. I want a record of this. For me. For Matthew. For friends. For grandparents who faithfully ask "What was Matthew's number this morning?" and "Did he go low after soccer?"

One warning though....I plan to be honest. Some days, Matthew's numbers are fantastic and I'm going to write about it. But some days his numbers will be so out of whack, it'll leave me in tears and I'm going to write about it. It's all part of our story.

Let's make a deal though. Please don't worry about me if I'm having a rough day, just pray a little harder. Okay?

Until there is a cure, life has changed, but God has not. He is still good.