Wednesday, March 30, 2011

Pump Update

     Hooray! We finally have straightened out all of the insurance issues and are set to start pumping.  We will be meeting with our pump trainer at our endo's office Monday.  We will be doing a saline trial for a few days and then switching over to insulin on Thursday or Friday.  
     I am so looking forward to starting on the pump.  The biggest reason is that Julia has always been a grazer.  That has been one of the hardest adjustments for us and her.   Another huge reason, birthday parties.  There is nothing worse than having to look your sweet baby in the eye and tell her "Of course you can have cake but then you have to have another shot."   Her answer is usually always, "Okay Mommy" or "I know Mommy" but it bums me out every time.  
     There is fear too, I am nervous because it is new.  I know it will be an adjustment and probably frustrating. After talking to Cynthia, reading positive pumping posts from the rest of the DOC, and feeling the support and love from all our friends and family, I know we are ready. I posted on facebook yesterday after speaking to the insurance because I was so happy. Seeing all the "likes" and supportive comments humbled me and brought me to tears.  Thank you for making me stronger.  
     I will update after we are rolling to let you all know how it goes but until then, please keep us in your thoughts.  

Monday, March 14, 2011

Great Weekend

As the title says, we had a great weekend.  It started out Friday afternoon with Julia getting her ears pierced.  
It was a very exciting trip culminating with a quick conversation with Julia's endocrinologist.  I researched before we went, read the info online and yet diabetes still threw a kink into the plans.  As I was signing the waiver at the store, I noticed a small line item that says if you have diabetes or are taking blood thinners, you need to speak to your doctor.  So at this point should I have left and called the doctor?  Probably but I was there in the hospital when the doctor told me there are only 2 things Julia can't do, join the military or fly a plane.  Nobody said anything about ear piercing.  And in that moment, I was angry at diabetes.  I was not going to let it take this moment from my little girl.  I told the sales clerk that she had Type 1 diabetes and asked if that would be a problem.  She said no as long as she was not on blood thinners which she isn't so a few deep breaths and quick pricks later, we were all done.  


As soon as we left the store my bravado faded into panic, what if I had done the wrong thing?  What if this was going to cause her more harm?  So once we got home, I called the doctor, in a rush of words and worry I explained what I had done and held my breath waiting for his response...he LAUGHED at me.  He told me not to worry and that he understands how important ear piercing can be and that it is fine.  It may take a little longer to heal but she is fine.


Saturday was the first game for Julia's softball team, Purplicious.  It was very early but it was great!  The sun was shining, it was a beautiful Southern California morning.  
She played hard, threw the ball from 3rd to 1st with no cut off, and had three great hits.  Her numbers stayed in range and since her game ended at snack time, she was able to eat her after game snack with her teammates with no extra shots needed.  


Sunday we took the kids to their elementary school to practice riding without training wheels.  They both were amazing!  


video


It really was a great weekend.  Yes, diabetes reared its head a few times (like it always does) but it didn't run our lives.  We did the regular things that a normal family does and it felt great.



Tuesday, March 1, 2011

Diagnosis

One question I get a lot is, "How did you know?"  My answer, to spare them a LONG story, is "She got really sick."  But for anyone who wants to know, here is the long story...


It started in late October/early November, we were having a crazy heat wave and Julia was very thirsty and so of course it made sense that she was going to the bathroom more.  Right?  Well hindsight is 20/20 so of course there are days I beat myself up for not taking her to her pediatrician sooner but I can't turn back time.  Bubba and I went away for the weekend and left the kids with my parents.  We were attending a Marriage Encounter Weekend.  On this weekend, we learned about ourselves and our marriage.  We left feeling very united as a couple.  I don't think this was an accident.   


My parents met us at the house with the kids and my mom let us know that Julia had thrown up a little while before they were bringing them home.  She also let me know that the frequency of her urinating had increased and she was drinking a lot.  She also took a nap earlier in the afternoon.  I asked my mom what she thought it was and she said, "Well, diabetes, Aunt Beanie used to do that."   (Aunt Beanie was my great Aunt who had type 2 diabetes).  My parents left and Julia continued to be sick through the night.  She also kept saying she needed to use the bathroom and she would go a lot.  This didn't make any sense to me because she had nothing  in her system.  We decided to call the pediatrician first thing in the morning.  I felt so bad for Julia that night.  She kept saying how thirsty she was which I attributed to the stomach bug I thought she had.   I knew something was wrong I just didn't know what and I didn't know if the vomiting and increased urination were related.  When the vomiting would subside I was trying to get her fluids.  I was really worried about her becoming dehydrated.  So I would try to get her sips of Gatorade, Sprite and Ginger Ale. 


Monday morning, we called the doctor and they were able to get us in so Bubba and I took Joseph to school and then headed to our pediatrician's office with Julia.  At this point Julia was very weak and lethargic.  She kept saying she just wanted to go to sleep.  She could barely hold her head up and I was carrying her.    We got to the doctor and I asked if we could get a room right away so I could lay her down.  They said there was a flu going around but I told them that there was more than that going on and once I explained the situation they had us get a urine sample.  While we were waiting in the room for the doctor to come in, I heard her outside the door say "Oh no" in a very sad way.  I knew whatever was coming through the door was not going to be good.


The doctor came in and explained that the urine test was positive for diabetes.  She went on to say that most kids are not sick like Julia was at that point.  She advised us to go to Miller Children's Hospital Emergency Room right away.  She called the pediatric endocrinologist to let them know we were coming.  


I carried Julia back to the car and we started the 30 minute drive to the hospital.  She was barely awake when we got there and her breathing was not right.  When she was awake, she would either be vomiting or begging to lay down.  In the triage area they tried to take a blood sugar reading but her levels were too high to register on their machine.  They moved us right to a bed in the E.R.  I thought they were trying to be nice because she was uncomfortable.  I am so grateful that I didn't understand diabetes then like I do now.  The nurses and doctors were telling us information like that she was in DKA and that her blood sugars were over 700.  This information meant nothing to me.  Now I understand.  DKA stands for Diabetic Ketoacidosis which is a potentially fatal complication.  Julia's blood sugar should be between 70 - 165.  We were moved within a few hours to the PICU (Pediatric Intensive Care Unit).


I say we because I never left the hospital.  I stayed with Julia until she was released from the hospital. Sleeping in bed with her.  I only left her to go downstairs to eat or make phone calls or cry.  Bubba was great.  He took care of Joseph at home and coordinated for others to take Joseph sometimes so that he could be with us as much as possible.  


We stayed in the PICU for one night.  She had IVs in both arms so that she could be re-hydrated and get insulin to bring her blood sugar down.  It was important that it not happen to rapidly because that could be dangerous as well.  Luckily this was not a problem.  Her numbers came down slowly and steadily through the night and in the morning after she ate breakfast we were moved to the general floor.  


Our time on the general floor was a whirlwind.   We meant with Julia's endocrinologist, nutritionist and a CDE (certified diabetes educator).  We were given notebooks full of information about diabetes, counting carbs, physical activity, ketones, and much much more.  Our classes were scheduled to start Wednesday.  We had different kinds of classes and tests and we knew we could not leave the hospital until we passed all of our tests.  We had classes with the nutritionist about how to read the food labels correctly.  We had to create a daily meal plan with correct carb counts in order to pass this section.  We had classes with the CDE about Type 1 diabetes and EVERYTHING that it entails.  In order to pass this section, we had to be able to basically become diabetes experts overnight.  We also had to test Julia's blood sugar, draw up insulin correctly and give her the injections.  We also met with the physical therapist who taught us about the importance of exercise and how to balance physical activity and blood sugars.  If this all seems overwhelming it was.  I barely had time to process what was going on with my daughter.  That came later.  At this point I was really just in a "survival mode."  I needed to learn all that I could as fast as I could in order to get her home.  


By Friday all of our classes were complete and the only thing we had to do was draw up her insulin dose at dinner time.  This dose is different because it involves two types of insulin, the long acting and the short acting in one syringe.  Her dinner came, she ate, we carb counted and successfully determined her insulin needed.  Bubba drew up the dose and gave Julia her injection (I did it with saline to show that I could).  We were free to go!  I have never been so relieved and so scared at the same time.  The closest thing I can compare it to is when you have a baby and they release you from the hospital.  You are ready to leave but you realize that now YOU are the one responsible for keeping this little person alive.  


So that brings us to now, where we live every day knowing that we are the ones responsible for keeping our little person alive.  It is still exhausting and scary but I don't want that to go away.  Type 1 diabetes is a 24/7  job and I may not have applied for the position or wanted it but I will do my job and do it well.  She's counting on me.