We made it almost 2 years after Serenity was diagnosed before our first visit to the emergency room.
Her blood sugar was staying in the 400s and just wouldn't go down. It started in the evening and led to multiple pump site changes (due to my assuming that they were the problem). When her blood sugar finally did go down, around 1:30am, I went to bed. The next morning Serenity's blood sugar was back up to 400 and she had moderate ketones. So, off to the ER we went.
We spent a total of 10 hours at the hospital. At one point a man came through the hall with a food cart offering free coffee to parents. (We were at the children's hospital.) It felt like Christmas! (Hi, my name is Amber and I am a coffee addict.) I hadn't eaten all day and had only had a cup of coffee hours earlier. I was so excited as a stirred cream and sugar into my styrofoam cup. And then I took the first glorious drink... and was reminded that hospital coffee tastes like cardboard. Oh well. It was a nice gesture.
They did blood work on Serenity, did a thorough exam, gave her insulin and managed to bring her blood sugar down to the 200s. And in the end they determined that Serenity's insulin pump had malfunctioned. They had me call the pump company to have them send her a new one. (Thank God her pump was still under warranty!)... This led to a forty-five minute phone call while the pump representative had me read off all of the information from every screen, determining that he, in fact, could not see that there was a problem with the pump, but agreed to replace it simply due to the doctor's request.
Serenity would have to go back to getting shots for a couple of days until her new pump arrived. Once we had her school note, prescription for more insulin, and discharge papers, we were (finally) free to go. The hospital had provided Serenity a sandwich for lunch, but I had still not eaten all day. So, on our way home at 6:00, McDonald's sounded (and tasted) like a 5-star meal.
Serenity's pump came in the mail today. She will be put back on it after dinner this evening (24 hours after her last shot of long-lasting insulin). But her numbers are still not great. I find myself wondering if it was her pump malfunctioning and her blood sugar levels are having trouble getting back on track or if it was never her pump to begin with and something going on inside her body instead... I guess time will tell.
Wednesday, September 19, 2012
Monday, September 3, 2012
Shot vs. Pump
Serenity was given 3 shots a day (mostly by me & the school nurse) for a year and a half. Then she got on the insulin pump. It has its ups & downs.
When Serenity was getting shots she was on a very strict eating schedule. If she ate too early, her blood sugar levels were high. If she ate even half an hour late, she would inevitably get low. We, as a family, learned to work our schedule around meals. If Serenity got an extra snack, for example... at a class party, I would have to give her an extra shot. (Just a side note: it is so annoying when others comment on how much they hate needles and act like they are scared of my daughter getting a shot. I'm not talking about little kids, either. If you are a grown up and you're not even the one getting a shot, suck it up. My daughter IS the one getting the shot & she does.) Another down-side to getting shots is that you have less control over your blood sugar levels... but I'll explain more on that later.
Before Serenity got on the pump, we (Serenity, my husband, & I) had to attend a pump class. The diabetes educators showed us the different pumps we could choose from, went over the pros & cons, and put a pump site into each diabetic child's arm to make sure they weren't allergic to the adhesive on the inset. One of the things they were adamant about telling us was that getting on the pump would mean more work for us, the parents. If the pump were to malfunction (which we have never experienced) or if the inset did not go into the skin or deliver the insulin correctly (which we have experienced multiple times), it can quickly result in high blood sugars, ketones, and even DKA (diabetic ketoacidosis). For this reason, we have to check blood sugars more often.
For the first month that Serenity was on the pump I had to check her blood sugar several times a day, as well as at midnight, 2:00am, and 6:00am. I was VERY sleep deprived at the end of that month. But as a result of knowing those blood sugar patterns, we were able to tailor Serenity's insulin dosages, hour-by-hour, to result in better numbers and over-all better control. Serenity's first A1c test after getting on the pump was 6.3, the best it had ever been since being diagnosed. And after that first month, I got to catch up on sleep.
Now Serenity doesn't have to be on a strict eating schedule. We can sleep in on the weekends. We can go out to eat on special occasions and not worry about the long wait. We can eat around our daily schedule instead of schedule the day around our meals. And at class parties, Serenity just has to press a few buttons on her pump to eat that extra snack. We still have to check her blood sugar often, but not around the clock. We were told, before getting the pump, that it's not the best choice for everyone, and I can see why some would choose to continue with injections, but for Serenity, and for our family, its made life with type 1 diabetes just a little bit easier.
When Serenity was getting shots she was on a very strict eating schedule. If she ate too early, her blood sugar levels were high. If she ate even half an hour late, she would inevitably get low. We, as a family, learned to work our schedule around meals. If Serenity got an extra snack, for example... at a class party, I would have to give her an extra shot. (Just a side note: it is so annoying when others comment on how much they hate needles and act like they are scared of my daughter getting a shot. I'm not talking about little kids, either. If you are a grown up and you're not even the one getting a shot, suck it up. My daughter IS the one getting the shot & she does.) Another down-side to getting shots is that you have less control over your blood sugar levels... but I'll explain more on that later.
Before Serenity got on the pump, we (Serenity, my husband, & I) had to attend a pump class. The diabetes educators showed us the different pumps we could choose from, went over the pros & cons, and put a pump site into each diabetic child's arm to make sure they weren't allergic to the adhesive on the inset. One of the things they were adamant about telling us was that getting on the pump would mean more work for us, the parents. If the pump were to malfunction (which we have never experienced) or if the inset did not go into the skin or deliver the insulin correctly (which we have experienced multiple times), it can quickly result in high blood sugars, ketones, and even DKA (diabetic ketoacidosis). For this reason, we have to check blood sugars more often.
For the first month that Serenity was on the pump I had to check her blood sugar several times a day, as well as at midnight, 2:00am, and 6:00am. I was VERY sleep deprived at the end of that month. But as a result of knowing those blood sugar patterns, we were able to tailor Serenity's insulin dosages, hour-by-hour, to result in better numbers and over-all better control. Serenity's first A1c test after getting on the pump was 6.3, the best it had ever been since being diagnosed. And after that first month, I got to catch up on sleep.
Now Serenity doesn't have to be on a strict eating schedule. We can sleep in on the weekends. We can go out to eat on special occasions and not worry about the long wait. We can eat around our daily schedule instead of schedule the day around our meals. And at class parties, Serenity just has to press a few buttons on her pump to eat that extra snack. We still have to check her blood sugar often, but not around the clock. We were told, before getting the pump, that it's not the best choice for everyone, and I can see why some would choose to continue with injections, but for Serenity, and for our family, its made life with type 1 diabetes just a little bit easier.
Friday, August 17, 2012
Mom, Advocate
With the diagnosis of type 1 diabetes comes an overwhelming new daily routine. I had to start checking Serenity's blood sugar several times a day and throughout the night. (She quickly learned how to do this and we began taking turns during the day.) I had to start carefully counting her carbohydrates for every meal and snack, and we soon learned that Serenity needed to be on a fairly strict eating schedule in order to keep her blood sugar levels out of the danger zones. I had to draw up and inject Serenity with shots of insulin at breakfast, lunch, and dinner. It took some time for Serenity to learn how to recognize when her blood sugar was too low, so I had to learn the warning signs myself; when she was instantly fatigued or suddenly begging for food with claims of starvation, I learned to check her sugar.
Two weeks after diagnosis, Serenity went back to school. This was after I set up and attended a 504 Plan meeting at the school, which was less of an official meeting than it was an opportunity for me me train the nurse, teachers, and office personnel how to care for Serenity and what warning signs to watch out for, as she was the only diabetic in her school. (I was very thankful at this point that I had grown up with a T1D brother and had the knowledge from years past.) That first week was torture for me; I was a nervous wreck! But the nurse called me any time she had a question or was unsure about how to treat Serenity's blood sugars and we started sending a daily journal back and forth for us to share blood sugar numbers and insulin changes. I learned to trust the staff, if not to know exactly what to do, then to at least call me when they didn't. Our family slowly settled into our new routine, which became second nature to us.
I immediately became an advocate for my daughter. I asked Serenity's teacher to let me know in advance of any extra snacks that would be served or class parties that would include food. I attended every party. Prepared for every extra snack. I spent all day on Field Day at the school to keep a closer eye on Serenity, as her blood sugar is affected by exercise. (To be fair, I also attended every party & spent Field Day with my other 2 children.) I was (am) determined that Serenity be included in everything her class did to the best of my ability. After all, she was singled out enough with the frequent trips to the nurses office for blood sugar checks and shots.
Last summer we moved and the kids went to a different school. Serenity was no longer the only type 1 diabetic in her school; now she was one of 3. The new nurse was better informed, so there was no need to turn into Personal Medical Trainer again. But I am still an advocate for her in many ways. I still attended every class party & Field Day (for all of my kids). And Serenity's teacher would text me whenever her normal schedule was going to change or include food. I also signed us up for the JDRF 2011 Houston/Gulf Coast Walk to Cure Diabetes. We raised over $500, which I guess isn't bad for our first walk; we will be back this year. And as summer comes to a end, I will again become Serenity's advocate. I will attend her 3rd 504 Plan meeting, with her new school packet and the additional note from her doctor (that I have found the need to acquire) stating that she may require additional absences directly related to her T1D. I will meet with her new teacher and provide her with a "cheat sheet" of warning signs to look for and the scheduled times when Serenity will need to go to the nurse. And I will ask her to save my number in her phone in case of emergencies, class parties, and unplanned snacks. And on the 1st day of school, I will walk all 3 of my daughters to their classrooms and drop them off with the security that they will be well cared for.
Two weeks after diagnosis, Serenity went back to school. This was after I set up and attended a 504 Plan meeting at the school, which was less of an official meeting than it was an opportunity for me me train the nurse, teachers, and office personnel how to care for Serenity and what warning signs to watch out for, as she was the only diabetic in her school. (I was very thankful at this point that I had grown up with a T1D brother and had the knowledge from years past.) That first week was torture for me; I was a nervous wreck! But the nurse called me any time she had a question or was unsure about how to treat Serenity's blood sugars and we started sending a daily journal back and forth for us to share blood sugar numbers and insulin changes. I learned to trust the staff, if not to know exactly what to do, then to at least call me when they didn't. Our family slowly settled into our new routine, which became second nature to us.
I immediately became an advocate for my daughter. I asked Serenity's teacher to let me know in advance of any extra snacks that would be served or class parties that would include food. I attended every party. Prepared for every extra snack. I spent all day on Field Day at the school to keep a closer eye on Serenity, as her blood sugar is affected by exercise. (To be fair, I also attended every party & spent Field Day with my other 2 children.) I was (am) determined that Serenity be included in everything her class did to the best of my ability. After all, she was singled out enough with the frequent trips to the nurses office for blood sugar checks and shots.
Last summer we moved and the kids went to a different school. Serenity was no longer the only type 1 diabetic in her school; now she was one of 3. The new nurse was better informed, so there was no need to turn into Personal Medical Trainer again. But I am still an advocate for her in many ways. I still attended every class party & Field Day (for all of my kids). And Serenity's teacher would text me whenever her normal schedule was going to change or include food. I also signed us up for the JDRF 2011 Houston/Gulf Coast Walk to Cure Diabetes. We raised over $500, which I guess isn't bad for our first walk; we will be back this year. And as summer comes to a end, I will again become Serenity's advocate. I will attend her 3rd 504 Plan meeting, with her new school packet and the additional note from her doctor (that I have found the need to acquire) stating that she may require additional absences directly related to her T1D. I will meet with her new teacher and provide her with a "cheat sheet" of warning signs to look for and the scheduled times when Serenity will need to go to the nurse. And I will ask her to save my number in her phone in case of emergencies, class parties, and unplanned snacks. And on the 1st day of school, I will walk all 3 of my daughters to their classrooms and drop them off with the security that they will be well cared for.
Friday, August 10, 2012
Sweet Serenity
I am a mom to 3 little girls, ages 11, 9, & 8. I love them all dearly & consider myself blessed to be their mom. Alaina, my oldest, is 33% tomboy, 67% diva! Novalee, my 9 year old, has always walked to her own little drum. And Serenity, my 8 year old, is a little ball of giggles. She also happens to have type 1 diabetes. This is my story, as a mom to a T1D child.
When my kids were very young, I knew when they had an ear infection. I could correctly diagnose them with strep throat before taking them to their doctor. And, having grown up in the same house with my older brother who had type 1 diabetes, I knew when my youngest daughter, then 6 years old, developed the symptoms. Of course, you don't jump to the conclusion that your child has T1D right away. First I noticed her frequent urination and I, along with her teacher, thought she must have a urinary tract infection. I planned to make her an appointment while she was out of school for Thanksgiving break, but before I did I noticed that Serenity was asking for something to drink every time I turned around. Another symptom. But I questioned myself. I mean, maybe she was just thirsty. Maybe it seemed like she was drinking more than she actually was. So I decided that I would measure everything she drank the next day. From the time she woke up asking for a drink, Serenity had drank over 12 oz every hour and was still thirsty. I thought back, looking for other symptoms, and remembered mentioning to my mom that Serenity had developed a habit of crawling into my lap and just laying on me. Fatigue. Another symptom.
It was around lunch time, the day before Thanksgiving, when I called my sister-in-law and asked if I could check Serenity's blood sugar on my brother's meter. My brother's meter read 'Hi' when I checked (and double-checked) Serenity's blood sugar. On his meter, that indicated that her blood sugar was over 500. For a non-diabetic, a normal blood sugar is roughly between 80 and 120. When I got Serenity to the emergency room her blood sugar was 721. The doctor, rude little man, kept going on about how I should have gone to a different hospital because this one didn't have an endocrinology department and how he would have to call Serenity's pediatrician to see where they wanted them to send her. Even knowing what I knew, even after hearing how high her blood sugar was, I had to hear the words. I had to ask him. I think it was only then that the doctor realized that he was diagnosing my daughter for the first time, that we didn't know before then. He told me, "Yes, she has type 1 diabetes." He was nicer after that. He even brought her a little pink teddy bear.
We were transferred downtown by ambulance to Texas Children's Hospital. They were wonderful. But the doctors kept asking me how I knew to check Serenity's blood sugar. They were in awe that I had brought her in before she got sick or went into diabetic ketoacidosis (DKA). The day my daughter was diagnosed with type 1 diabetes was the day I learned that knowing the symptoms can save your child's life.
When my kids were very young, I knew when they had an ear infection. I could correctly diagnose them with strep throat before taking them to their doctor. And, having grown up in the same house with my older brother who had type 1 diabetes, I knew when my youngest daughter, then 6 years old, developed the symptoms. Of course, you don't jump to the conclusion that your child has T1D right away. First I noticed her frequent urination and I, along with her teacher, thought she must have a urinary tract infection. I planned to make her an appointment while she was out of school for Thanksgiving break, but before I did I noticed that Serenity was asking for something to drink every time I turned around. Another symptom. But I questioned myself. I mean, maybe she was just thirsty. Maybe it seemed like she was drinking more than she actually was. So I decided that I would measure everything she drank the next day. From the time she woke up asking for a drink, Serenity had drank over 12 oz every hour and was still thirsty. I thought back, looking for other symptoms, and remembered mentioning to my mom that Serenity had developed a habit of crawling into my lap and just laying on me. Fatigue. Another symptom.
It was around lunch time, the day before Thanksgiving, when I called my sister-in-law and asked if I could check Serenity's blood sugar on my brother's meter. My brother's meter read 'Hi' when I checked (and double-checked) Serenity's blood sugar. On his meter, that indicated that her blood sugar was over 500. For a non-diabetic, a normal blood sugar is roughly between 80 and 120. When I got Serenity to the emergency room her blood sugar was 721. The doctor, rude little man, kept going on about how I should have gone to a different hospital because this one didn't have an endocrinology department and how he would have to call Serenity's pediatrician to see where they wanted them to send her. Even knowing what I knew, even after hearing how high her blood sugar was, I had to hear the words. I had to ask him. I think it was only then that the doctor realized that he was diagnosing my daughter for the first time, that we didn't know before then. He told me, "Yes, she has type 1 diabetes." He was nicer after that. He even brought her a little pink teddy bear.
We were transferred downtown by ambulance to Texas Children's Hospital. They were wonderful. But the doctors kept asking me how I knew to check Serenity's blood sugar. They were in awe that I had brought her in before she got sick or went into diabetic ketoacidosis (DKA). The day my daughter was diagnosed with type 1 diabetes was the day I learned that knowing the symptoms can save your child's life.
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