Sometimes You Just Have To Laugh

Today was one of THOSE days. :) School hadn't even started when a student brought my phone out in the hall. It was the school nurse - Andrew's site had come out of his leg. I found someone to watch my class so that I could go put in a new site. The nurse watched as I had Andrew prepare most of it, and then she actually pushed the buttons to insert it. I finished it from there. The nurse said that if she wrote down the steps next time (there are 15 steps according to the manual I plan to give her), she could do it so I wouldn't have to come anymore. Sounded good to me! As I reloaded the insulin cartridge, the first alarm went off. Low insulin - less than 30 units. No problem. He uses less than that in an entire day. Then another alarm went off - low battery. Okay. I was glad I was there, because you have to change the battery right away and then the pump has to be reloaded, primed, etc. Problem solved & Andrew and I head back to class.

About 1:50 pm, the phone rings in my classroom. It's Andrew's school nurse again. Andrew was slipping his pump down his shirt so that the tubing wouldn't get snagged during recess. He accidently dropped the pump, and it ripped the site out again! This is a record! I have always found someone to cover & gone immediately - he does have to have insulin. This time, I looked at the clock. Gene has 7th period planning, so his students would be gone by 2:00. I had students until 3:27. Dad gets this one. Gene has only done a handful of site changes, so I felt bad for both of them.

Andrew gives Gene an A+ on inserting the site. However, since this was now the second time we had to prime the pump, when Gene went to fill the new tubing with insulin, there wasn't enough! We had emergency insulin at school, but it wasn't a vial. It was a cartridge used to fill one of his old insulin pens. Gene assembled the needle, filled it with air, and inserted it into the cartridge just like he would a vial. I'm laughing even as I write this. The pressure of the air inside the already packed cartridge blew the cork off the end of it and spilt insulin all over Gene. Gene somehow got enough insulin into the pump. When Gene went to remove the blue plunger (you can see it in the pictures of a site change), instead of snapping off, it crumbled into broken bits of plastic. Between the two changes, that's more problems than I realized were possible with site changes! Miraculously, both sites were good and Andrew's numbers have been fine.

Andrew has been wearing his pump during basketball practice. On his way in tonight, Andrew asked, "Can I take my pump off so I don't rip off the site?" Given today, I thought it was a good idea!

Natural Med???

Okay... Andrew now has an official appointment with a "certified nutritional counselor" for December 22nd after Andrew meets with his endocrinologist. She is in Franklin, TN and was recommended to me by a friend that I met through this blog (Hi!). This friend took her daughter with T1D to her and it helped. She made the recommendation months ago, but we have taken awhile to come around. One of our closest friends has seen great results for her children through a natural med doctor. I do feel like this is what we are supposed to do next. Yet, sometimes I still think, "Are we crazy?" This area is harder to blog about, because I don't know where it is going. I also run the risk of sounding hypocritical. Some days, I believe doctors know what they are doing & some days I don't. The same is true for natural med. Just for the record- I am not a doctor & I reserve the right to change my mind! :)

Gluten

Gluten is a special type of protein commonly found in rye, wheat, and barley. There is a definite link between gluten & type 1 diabetes, but it is uncertain what the link is. Some suspect that early exposure to gluten is one of the environmental triggers for the disease. Being type 1 diabetic gives you a 1 in 10 chance of developing celiac disease, an intolerance of gluten. My sister and a couple of great aunts have celiac. For these reasons, we kept Ben gluten-free for his first year of life. Andrew has been tested twice for celiac antibodies and has tested negative both times. Still, I wish it were easier to eat gluten-free!

Don't give gluten to infants!- http://www.ncbi.nlm.nih.gov/pubmed/14519706
GF diet doesn't prevent T1D once antibodies start -http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1783529/

Update

AJ is better! Thanks for praying! Today was busy with correspondence with nurses from school & Vanderbilt, but everything is working out well.

AJ & iPro charts

I don't know the details about AJ, but I heard that his fever broke last night! Praise God, and please keep praying!

I love the faxed iPro charts that I got at school this morning! One interesting fact - Andrew's highest peaks are always after school lunch! Since I see good readings at 11:15 & 2:15 every day, I didn't expect it. Because of having to return to the nurse after the meal for carb counting, his lunch bolus is often as much as thirty-five minutes past the beginning of the meal! Meanwhile, his BG is soaring really high before falling quickly! It's hard to predict what kids will eat, so Vanderbilt suggests bolusing right after a meal. At home, we can bolus quicker. I will ask the school nurse to bolus for BG & 30g of carbs before lunch. Then after lunch he can accurately count the total carbs he ate and bolus for the remainder. He is a good eater & has NEVER consumed fewer than 30g of school lunch. A friend of ours used this approach with her child. This can't be done very well with shots. Multiple site injections metabolized quicker for Andrew and always drove him low. In the pump, it doesn't seem to make a difference since it all goes in the same site anyway.

Andrew has gone low between 4 & 6 pm the last couple of days. We're not sure if it is because of the increased basal or because he is loving his new Ripstik! We are going to try a decreased basal when he plays the Ripstik & see what happens. Life is full of experiments!

Please Pray for AJ!

AJ was on Andrew's baseball team last Spring. Just after practices began, AJ got sick and then was diagnosed with aplastic anemia. He was unable to play for fear that any injury could cause unstoppable bleeding. He had a bone marrow transplant this summer. He has done very well so far, but is running a fever for the first time today. He is still on immunosuppressant drugs. He cannot go to school or anywhere with large groups of people because of the risk of infection, so this is obviously not a good sign.

Andrew has followed AJ's story on his blog. It has been sweet to watch Andrew care & pray for his friend. AJ went to Vanderbilt Children's hospital, which was where Andrew was, but in Andrew's words, "What AJ has is much worse!" This young man has been a trooper in very difficult circumstances. He and his family could use your prayers tonight & tomorrow as they likely head back to Vanderbilt. Thank you for your prayers!

Happy Birthday, Andrew!

Andrew had a good birthday! His BG didn't, but he & his BG are not synonymous. Andrew was happy most of the day. A friend who couldn't make it to his party came by in the morning & dropped off a stunt remote control car. It is a hit with all the boys! He got the lunch of his choice followed by gifts from grandparents and his great aunt & uncle. He had the afternoon to enjoy those, and then he had a party in the evening at Pump It Up. He enjoyed his day, and the rest of us did, too! I thank God for nine years of blessing through Andrew! Although I am about to share with you how diabetes affects a birthday, neither Andrew nor I will probably remember the diabetic details soon. Birthdays are still about thanking God for blessings and enjoying friends and family. Those are the memories we cherish & diabetes is just one of the things we try to take care of so that the important things can remain important. I do think it is interesting though that Andrew's birthday (November 14th) is World Diabetes Day!

Andrew wanted "lots of Domino's pizza" for lunch. Pizza had high carbs & high fat, which is always hard to handle. The high carb needs lots of insulin, but high fat takes longer to digest, so the insulin need is spread out. The pump has a great combo feature where you can give say 65% of the dose now & the remaining 35% over the next 3 hours. It's great - once you have it figured out! The lunch ratio had been 1:18, but Ann recommended 1:20 with the changes. After Friday night, we changed it to 1:19 instead. It still wasn't enough. He ran high through the afternoon. When the party started, he was jumping around & falling often, so I had him take the pump off. Soon all that exercise kicked in, and he was low - BG 48. He doesn't mind being low at home. It is a good excuse to eat sugar. He will sit & talk to us or watch tv until his BG comes up. It was a lot harder to be still at a birthday party! He said he felt better & retested in efforts to convince me he was coming up. BG - 50. The time stamp revealed that it had only been 6 minutes. I agreed to a glucose tablet to help him get up faster. In a few minutes, he looked better & went off to play. I didn't worry about complex carbs because we would be eating cake in less than an hour. I probably should have because he ended up low a second time. He had some more sugar & soon it was time for cake. He reconnected his pump in the party room & ate cake like everyone else.

iPro Results!

I was excited to get an email at work today saying the results were ready from the iPro & that we could discuss them over the phone instead of driving to Nashville!!! Ann (the nurse) called me on my way home & said the iPro showed that Andrew is running too high for the first two hours after every meal & then dropping too low. She recommends raising the basal rate to assist with the after meal highs, but then reducing the carb ratio so that he doesn't drop so low 3 hours post meal. It sounds logical to us, & we were very excited to have something to try. She also made some changes to his nighttime regimen. I was feeling great about it, but so far the results haven't been good:

5:14 56; ate 2 hard candies from low box. Dinner followed shortly after. Programmed pump with new settings.
5:58 Bolus for dinner at higher carb ratio;
7:29 327 Bolus for BG & drink
8:36 401 Bolus
We were at the Bob Jones football game & left after the third quarter because he wasn't feeling well from the high BG. We listened to the Patriot victory on the radio, and it did save us a lot of time in getting out of the parking lot!

Andrew could be rebounding from the low earlier. No ketones. I will keep a watch on him through the night. I would so love to sleep through the night again! I checked him just after midnight last night because he had been running high. He was doing great, so I planned on sleeping through until morning. I woke up around 2 am, so I asked the Lord if He had woken me to check on Andrew. Sure enough, Andrew's BG was 48. Please pray for Andrew! Please pray for wisdom as we seek to make the right changes. Please pray that he can enjoy his birthday tomorrow. I hope he doesn't feel this badly at his party. He asked me at the game tonight, "Can I go to my party if my BG is still high tomorrow?" Of course, the answer is yes.

Pictures of a Site Change

We have some friends who are considering a pump, so we took pictures of one of Andrew's recent site changes. Here are all the supplies:

Insulin,
Insulin Cartridge pack,
IV Prep,
Alcohol Swab,
Inset for site (round case),
Tubing is coiled inside this site, but comes in a separate pack for others

We use the alcohol swab to clean the top of the insulin vial. Then we open the cartridge pack, attach the needle, & plunger and use it to draw up the insulin. Andrew can do this step himself!

Then it is time to choose a location for the site. We rotate right arm, right hip, right thigh, left thigh, left hip, left arm. We can also use his stomach, but his stomach needs a break for awhile. Andrew uses the IV Prep to clean the area. It also leaves a sticky residue which helps the site stay in place. Once we open the round case, we unwind the tubing, remove the cover over the needle, peel off the sticker, and pull it back to cock the needle. We are ready to go!
Now comes the L..O...N.....G count to 1, 2, th....r...e..........e before I push the buttons to insert the site. Once the site is in, we remove the tubing that is attached. The tubing goes through the cap of the pump & connects to the insulin cartridge. The insulin then slides in its slot & the cap is screwed on tight. The pump loads the cartridge and automatically detects the number of units of insulin in the cartidge.

Priming the pump is filling the tubing that you see with insulin. We also fill the cannula, which is the part of the tubing under Andrew's skin which you can't see. Now the pump is full of insulin and ready to pump it out through the tubing and into Andrew in little bits per hour or as needed for meals. It can be removed for baths, swimming, or contact sports, but for the most part, the pump is his constant friend.

Goodbye iPro

We took the iPro out of Andrew Tuesday morning. We are all glad to see it go! Andrew has been good and has not had a single piece of candy with it in even though it was Halloween weekend. We went to the carnival this year, so he didn't get that much candy anyway. They did go to the cake walk, so he still had sweets. We wanted to get good information from the iPro experiment, so we still had a pizza party & stuff we normally do.

Most of the time he had pretty good numbers while the iPro was in. Sunday afternoon & evening his numbers were great, but he ran non-stop. I just knew he was going to go low if I didn't turn down the basal. The previous Sunday he had gone low after AWANA even without all the other exercise. I turned it down 10% at 10:30 pm & rechecked him at 2 am. BG 330. I guess that was a bad call. Monday night, Andrew had his first basketball practice. It was only an hour long, and they really didn't run that much. Given what happened Sunday night, I didn't turn down the basal. At 2 am, he was low. After juice & 15 minutes, he was still low. Finally, 15 minutes later, his BG was up! Andrew woke up that morning with high BG & ketones. I had the nurse recheck him at 2 hours after breakfast to make sure the site was okay. However, his BG hit 41 first. After juice, it was 38.

Andrew slept between checks & snacks in the middle of the night, but I was tired & cranky Tuesday! However, I am thankful that we got some of those crazy nights recorded. Maybe the data will help us make some good changes. Maybe we can even sleep through the night soon!