Saturday, October 16, 2010

What's involved...

So, I thought I would talk about all of the supplies that are needed to care for my 2 little girls. It really is amazing everything that is needed to keep our little sweeties alive and well, as well as the cost that is involved.

These are the 2 kits that I have to carry around with me when the girls and I are away from the house. Each girl has their own kit, and in each kit there is: their blood glucose meters, an infusion site change, extra syringes and novolog, fast-acting carbs for low blood sugar, extra test strips and glucagon. So when I need to go to a simple place like the grocery store, it isn't a "grab the kids and go" event. I have to check and make sure I have everything I need in their kits before we leave the house, and then the kits can't just stay in the car. They go with the girls, so even in the grocery store, I am carrying along 2 kits. When you add my purse into the mix, as well as the 2 girls, I have a lot to juggle for a simple grocery run!
At the house, we have a spot in our garage that we have designated the "D" spot, which is where we keep all of the girls' extra pump and CGM supplies. We order their pump supplies in 3 month intervals, whereas their CGM supplies are ordered monthly. Having diabetes is not cheap, and with us having 3 diabetics in the family, our finances are stretched pretty thin. Matt is on daily injections, which is definitely the cheapest way to go, but we chose to have the girls on pumps, which gives us better control of their blood sugars, but that also raised the cost of their care. Being on a pump is actually quite expensive. We have wonderful insurance, but are still charged 20% for all of our pump and CGM supplies, which adds up quickly. Also, since there is no such thing as "generic" insulin, we are charged more for novolog (and lantus as well for Matt). A three-month supply of most prescriptions costs us $10, but three-months' worth of insulin costs us $30. So every three-months we pay $120 for the girls' and Matt's insulin. Expensive, expensive.

We also have an area in our house where we keep our sharps container as well as a Coca-Cola bank where we place our used test strips.

I also have a notebook where I keep detailed notes for each girl. Everyday, every time I poke them to check their blood sugar, I log what it was and what time I did it. I also write down when and what they eat as well as how many carbs were offered. Then, I will write down (in red) how much insulin they were given and, if was a mealtime, how many carbs they ate. This information is priceless when it comes to needing to make changes in their insulin regimen as well as when we go to see their pediatrician every 3 months.

And then, of course, the most important item for me in diabetes care for my girls:
COFFEE!!! I wish there was such a thing as a coffee IV because I would be hooked up to one immediately! I can't really even remember when the last time was that I got a full night's sleep. Even now as I write this, it is 1045pm and I am still up because I am waiting for Anne's blood sugar to go down, as she has been camping out over 400 for several hours now. Slowly, slowly, it is dropping so I am hoping to go to sleep soon but will be up again at least 2 more times overnight to check on them. And, of course, both girls will be up and ready for the day by 730am whether or not I am but, in the end, if my girls are safe, my sleep-deprived state is worth it.

Friday, September 24, 2010

The dangers of "D"

So, since Anne was diagnosed in January, she has been quite healthy. Every time she got a minor illness, like a cold, she fought it off like a champ. Elly, on the other hand, does not fight things off so easily. Counting diagnosis, Elly has been hospitalized twice. The second hospitalization was due to a urinary tract infection and when the culture came back, it confirmed ecoli. Elly was diagnosed with urinary reflux the summer before and we were "waiting it out" to see if she outgrew it, as many children do. With this UTI, we were scared that she hadn't grown out of it and more drastic measures would need to be taken, like surgery. Luckily, after going through some tests, we learned that she has pretty much outgrown it and probably won't require any further medical intervention, at least on the urinary reflux front.

Fast forward to Labor Day weekend. Anne had been acting cranky and not at all herself. She was refusing to eat, which is very unusual for her as she is usually a very good eater, and she had started to develop ketones. Chances are, the ketones were starvation ketones, brought on by her not eating, because her blood sugar numbers were actually fabulous. I just wish her numbers were the way they were that weekend all the time! That Saturday, after talking with the on-call pediatric endocrenologist, we opted to take Anne into urgent care because we could rid her of the ketones by raising her basal rate through her pump but then they would come right back. Anne was also not drinking, which was a little worrisome. At the urgent care, they took some blood and a urine sample but both came up negative for any sort of bacteria. The doctor suspected a viral infection but due to her sister's history of UTI's, as well as Anne being diabetic, they decided to give her a broad spectrum antibiotic and have us come back Sunday. On Sunday, things still hadn't improved and Anne was still refusing to eat or drink so at urgent care, we opted to give her IV fluids, as she was getting dehydrated.

Once she began to get the fluids into her little body, she became an entirely different child! She was laughing, talking and playing like normal again. It was amazing. She was also playing with the gauze from her IV.

The urgent care doctor, just following protocol, again wanted to see us the next day, Monday which was Labor Day. I was not keen on that idea, as it was a "hurry up and wait" kind of thing. At urgent care, there are no appointments. You check in and they call you in the order received, unless an emergency comes in, then you will wait even longer. This is hard enough for anyone, let alone a 1 year old! Luckily, we had a wonderful nurse that was able to talk the doctor into allowing us to call him the next day and let him know how things are going, and we will physically come back in if things don't improve.

During this entire saga with Anne, Elly was doing great. She showed no signs of sickness, which we were so thankful for since things go south very quickly with her. Monday morning, Anne was still doing great. I did a site change on Anne, which Elly was wonderful and "helped" with. Then, 830am arrives. Elly starts to complain of a tummy-ache. Oh no. Please don't let Elly be getting sick now. Then, without warning, Elly throws up. And then she throws up again. And then again. 3 times in an hour. And then I check for ketones, and they are quite large (like 2.1). I page the on-call doctor again and talk with him about what we should do. We decided to increase her basal rate for a few hours to help lower the ketones and push fluids to help keep her hydrated. Unfortunately, every time Elly would drink, she would throw it up. By the time 12N arrived, I had had enough and decided it was time to take Elly into urgent care. Just as I was getting things together to leave, the urgent care doctor called the check on Anne. I told him Anne was great but Elly was not. He said to bring her right in and he would have orders ready for an IV as well as zofran to help stop the nausea. He told me that they will start her IV in the hall if they have to. I was so thankful that he called, because when we arrived at urgent care, we waited less than 5 minutes before we were whisked into a room the the doctor has reserved for us (he picked one with a rocking chair just in case I had Anne with me. I thought that was so sweet of him to think of us like that). The nurse was able to start the IV and drew blood to start labs.

After just one bolus of IV fluids, Elly looked and acted a lot better. Unfortunately, when her labs came back, her numbers told a different story. She had very large ketones and it looked like Elly was heading into diabetic ketoacidosis (DKA). They told us that we needed to go up to Doernbecher Children's Hospital because she needed to be observed at least overnight.

So, off to Doernbecher Elly and I go. We were lucky enough that she was able to keep the IV that was placed at urgent care so she didn't have to be poked again at the hospital. Once at the hospital, they drew more labs and her numbers had worsened. This information caused Elly to be admitted rather than "observed." Overnight, they pushed the IV fluids and we were giving her massive boluses via her insulin pump to flush out the ketones. By the next morning, her ketones were down to a moderate level and we were released. Once home, Elly was able to eat and drink, and within 24 hours she was back to her normal, 4 year old self.

The scary thing about this is that all Elly had (Anne as well) was a stomach virus, which was something that has been going around like crazy recently. To a child without D, a virus like this usually won't be a cause for too much concern. If Elly didn't have D, I would have just given her lots of TLC at home and if a trip to urgent care was needed for some IV fluids, that would have taken care of it and we would have been free to go home. But when you have D, a simple virus can prove fatal. At urgent care, the doctor told me that we caught this very early, because if we had waited much longer, Elly would have gone into DKA. I am still amazed at how fast Elly got sick. 3 1/2 hours. That was all it was. 3 1/2 hours. Way too scary.

The urgent care doctor also told me that he was amazed at how fast Elly got sick. I told him on Saturday when I brought Anne in the first time that I wasn't going to take any chances due to how fast her sister gets sick. I don't think he truly believed me that when Elly gets sick, she gets sick quickly. He believes me now! Sometimes I feel like I'm over-reacting when my girls get sick, or that some doctors feel like I am over-reacting, but I would rather do that and keep them safe.

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.