Sunday, July 25, 2010

'D' Revisited

So, when Elly was diagnosed, I was already 6 weeks pregnant with Anne. Matt and I both figured "what's the chance?" and went on with life, caring for Elly and her diabetes, fairly confident that we wouldn't have to visit 'D' a second time with our second child. Little did we know at the time, but our chances were VERY good. Because Matt was already T1, Elly's chances was 1 in 22. Now, with Elly and Matt having T1, Anne's chance was 1 in 6. If we were to have any more children (which we aren't) their chances are 1 in 4. Not good odds in my opinion.

Anne was born on February 7, 2009 and was a healthy baby girl. We brought her home and went on with our life, caring for a toddler and a newborn. Due to Elly already having D, we did run a little scared and I checked Anne's blood sugar about once a week "just in case." Everything checked out great until mid January of this year. Anne was a tad fussy and not acting quite right so I decided to check her blood sugar, which came back 267. What???? Are we seriously going to do this again with another child, this time starting even younger (Anne was 11 months at dx and Elly was 25 months). I called our diabetes team and they suggested that we go straight to urgent care so she can have blood work done. We took her in and other than her blood sugar being a tad elevated (I believe she was about 160 at the time) everything checked out and we took her back home. They did rush the rest of her labs though and since it was a Friday night, we were to call the on-call pediatric endo the next morning for the rest of the lab results.

In the morning I paged the on-call and she delivered the news...Anne was also diabetic. This news hit Matt and I like a ton of bricks. How did this happen again? Why us? Why why why? It was hard enough caring for one little one with diabetes, but we now had 2 to care for. Our lives just got even more complicated.

Due to Anne being in the very early stages of D (her a1c was still 5.9) and our knowledge of how to care for a young child with T1, we were able to start insulin therapy at home and Anne was spared the hospital experience. The one problem that we ran into with Anne that Elly never experienced was that we were never able to give a small enough dose of lantus (the long-acting insulin) to Anne and not have her go low in the middle of the night. She was getting a half unit of lantus and it was too much, but she couldn't go without it either. We looked into the possibility of diluted lantus, but were told by the pharmacy that it wasn't possible. We were able to dilute her novolog (or fast-acting insulin) and that worked great. The only option we felt we had was to get Anne on a pump as soon as possible. When Elly was diagnosed, our diabetes team required that all T1 children be MDI for a year before starting a pump. We went through that with Elly and took the necessary pump class before Elly started pumping. With Anne, I think the diabetes team felt that we had enough knowledge and experience to skip the year of MDI and go straight to pumping with Anne. So Anne started pumping right before her 1st birthday.

The pump has been wonderful for Anne. When we first starting pumping with Anne, there were times at night when she didn't get a basal, and that helped prevent night time lows. This was something that can't be done with lantus. Once lantus is in your system, it is there until it wears off, where a pump gives a constant drip of insulin, which can be altered depending on the user's insulin needs.

Anne has now been pumping for 6 months now and it has been wonderful. And in the last month, Anne has also been on a CGMS, just like Elly. This has also helped me fend off lows before it becomes an issue.

It just seems unfathomable to have two little ones with D, but here we are. It's been hard sometimes and I go without sleep a lot but my little girls are worth it. They are precious and I hope that someday in their lifetime a cure is found.

Saturday, July 24, 2010

The start of 'D'

We always knew that 'D' could happen to our children, but we didn't feel that we needed to worry. Yes, Matt has it and has since he was 13 but I think we were living in the "it won't happen to us" world. On May 18, 2006, our beautiful Elly was born. We brought her home 2 days later and we never gave D one thought.

For 2 years, we were able to feed Elly what she wanted, when she wanted it, didn't have to worry about too much exercise and we were able to put her in her crib at night and know that she would wake in the morning because she had normal blood sugar levels. We didn't have to live on a strict schedule for meals and snacks because she didn't need insulin injections at certain times of the day. It was bliss. Then, on June 25, 2008 our world changed forever. June 25th happens to be Matt and I's anniversary, which will forever hold multiple meanings for us. That morning, Matt went to work as usual and I got Elly ready for swimming. We went and picked up grandma and off we went to swim class. Elly was very whiny and fatigued that day, which was very unusual for her, as she usually loved to swim. When I got her back home, she immediately fell asleep on me and slept for most of the day, which was very unusual, as she was usually quite active and napping really wasn't part of her vocabulary. When Matt returned home from work, I told him about our day and Elly's weird behavior. Matt was quite concerned about this but, at that point, we decided to just watch her, as I thought she might just be coming down with the flu. Elly had also been sucking down liquids like they were going out of style, and this she had been doing for about 6 months prior. Then, after dinner, she threw up. At that point, Matt insisted we take her into urgent care. He had this feeling that she was diabetic but I was still hopeful it was just the flu.

At urgent care they ushered us right into a room when they heard what her symptoms were. They were having trouble tracking down a blood glucose monitor to test Elly but luckily, Matt had his on him. When the result came back, her blood sugar was so high all the meter stated was "HIGH." At this point, we knew. And we could see it in the urgent care staff's eyes. They felt so sorry for us and our poor 2 year old that more likely than not has diabetes.

The urgent care staff called an ambulance to transport us to Doernbecher Children's Hospital. I rode in the ambulance with Elly while Matt followed with his mom (I had called his parents while we were waiting for the ambulance to arrive, as I didn't want him to be driving by himself). When we arrived at the hospital, we went directly to the ER. It was about that point where things really started to go south. Elly was slipping in and out of consciousness and they could not get an IV started in her due to her severe dehydration so they had to insert and IO into her knee so she could get the needed fluids. They then moved her to the PICU. By the time we arrived there, they were able to get an IV started. As the fluids continued to drip, a slow insulin drip was started s well, because at that point we learned that Elly's blood sugar was 616 at admittance.

Up until this point, Elly was placed in the cribs that look like cages, mostly due to her age. The problem with this is that she refused to sleep unless I was right next to her. So, I ended up sleeping in the crib with her! The PICU staff found this hilarious and said that they have never had a parent actually crawl into a crib with their child. By the end of the first night though, the staff took pity on me and we moved Elly into an actual bed, so long as someone was always in the bed with her, for safety. I really wish we had a picture of me in the crib with her because I'm sure it was quite a sight. I became very skilled at how to raise and lower the sides from the inside.

After 24 hours in the PICU, Elly's blood sugar had lowered enough that we were able to leave the PICU and go to a regular room. During the PICU time and after we moved into a regular room, we had extensive diabetic training. Luckily, due to our 'D' knowledge because of Matt, a lot of our training was abbreviated and we were able to mostly concentrate on the parts that applied to Elly rather than just the disease.

When we finally were able to bring her home, we were so scared. It was worse than bringing a newborn home. We now had a child, a toddler, with a very serious medical condition. And our worst fear was her going low, which happened the very first night. When we got home we got Elly into bed for the night and Matt and I soon followed. Right before we went to bed though, I went to check her blood sugar, which was 81. Crap! At night, our protocol was to treat lows under 150. I happened to have some Torani syrup on hand so I pulled some into a syringe and tried to feed it to Elly but she wasn't going to have any of it. She fought me tooth and nail to where I had to bring her into Matt and I's bedroom and Matt had to hold her down while I squirted the Torani into her mouth. It was one of the most horrible experiences, post-diagnosis.

Since diagnosis, though, Elly has been thriving. She got used to MDI and last November we were able to start her on a pump. The pump has really changed 'D' care for us, and it was for the better. 'D' is easier to manage because pumps can deliver such small units of insulin. Just try to pull up 0.025 units of insulin in a syringe! Due to the pump, Elly has been able to be more like a kid and not have to live on such a schedule anymore. It has been wonderful. And then, at the end of last month, we have started her on a CGMS (continuous glucose monitoring). That has been wonderful. We can now look at a screen and know where her blood sugar approximately is, and the reading is taken every 5 minutes. It also will tell us which direction her blood sugar is going, and how fast it is moving. This has been wonderful. We have had a few blips with the CGMS but, overall, it has been a wonderful addition to our diabetes arsenal.

Elly is now 4 years old and will be starting preschool in about 3 weeks. While this thought scares me, I know that she needs to go and be with kids her age and have fun. It will only be 2 half days a week and, for now, that is enough. This will also prepare me for when she starts kindergarten in a year.

Elly is such a happy and beautiful little girl. I am so blessed to be able to say that I am her mom and look forward to what the future holds for my little girl. She may have diabetes but diabetes does not have her.