Tuesday, September 20, 2011

Our Walk Video 2011

I finished our very first walk video.  Julia was diagnosed last year the day after our chapter's walk.  So our walk day is approaching along with her one year anniversary.  

I would love to have a big walk team to show Julia how many people love and support her.  We would love to have you join our team. 


If you cannot join our team please consider supporting our team financially.  No amount is too small.  Thank you for considering it.  The donations go to JDRF. They fund more type 1 diabetes research than any other charity worldwide and are making progress along many promising paths toward better treatments and a cure.  

Saturday, September 17, 2011

We have made a change

Most of you know Julia's endocrinologist since leaving the hospital has been the same doctor we saw in the hospital and we were happy.  He was there when we called and supported us in our medical plans for Julia and he got us on the road to taking the best care of our girl.  We trusted that he and his team were helping us to help Julia be and stay as healthy as possible.

Several months ago I met another pediatric endocrinologist in our area.  He was the speaker at a JDRF event talking about how diabetes management started, where it is now and what is on the horizon.  I really liked all the things he had to say and my internal struggle began.  He was so aware about the current technologies and spoke passionately about how using these technologies offers our children the opportunities to live their best healthiest lives.

I spoke to Bubba about whether or not we should change doctors.  We both felt safe with where we were and that we were making the best choices for Julia.

I am the type of person who likes to find out information.  I have been studying Type 1 since Julia's diagnosis so I can feel confident that she is getting the best care.

When we went to our last endo appointment in June I began to lose confidence in the care Julia was receiving.  We were told what a great job we were doing and her A1C had gone down but (and that is always the problem isn't it?  The nagging but) no changes were made to her pump settings.  Now I may not know much but I did know that one basal setting with a small change in the afternoon was not right.

For those of you not familiar with pump therapy and how it works here is a very simplified explanation.  Please keep in mind I am not a doctor.   The pump delivers insulin to Julia 24 hours a day in small amounts called her basal dose.  She also gets a bolus dose whenever she eats.  That is the insulin she gets to cover the carbohydrates she is consuming.  The ratio of basal and bolus is meant to be around 40% basal 60% bolus.  Obviously everyone is different and nothing is perfect especially when it comes to diabetes but (there is that word again) Julia's ratios were at about 20% basal 80% bolus and the doctor felt nothing should be changed.  In my opinion at that point being on the pump was no different than having her on MDI (multiple daily injections) except we weren't having to give her the insulin in shot form.

We decided that her next appointment would be with the other doctor that I had met.  At the beginning of this month we saw our new doctor for the first time.   We were all a little nervous going in to something new.  The first sigh of relief came when he did her A1C.  Previously when we went to the doctor, a week before Julia's appointment, we would have to go to the lab and have a blood draw done.  Julia called it her vein shot.  I made Bubba take her.  He was the one fielding the questions and dealing with lab techs who couldn't always get it on the first try.  Our new doctor does the A1C right there in the office.  A simple finger stick using her poker that she uses everyday all day long to do her bg checks. A simple drop of blood like she does all day every day when she does her bg checks.  A big relief for everyone involved.  The result was ready in about 5 minutes.  To which Bubba remarked, "That is amazing."   The doctor responded, "What is amazing to me is this technology has been around for a long time and doctors are still making their patients go to a lab."  I felt a twinge in my heart.

He looked at her pump and her ratios and discussed the changes he wanted to make.  He explained until we felt comfortable why we were making these changes.  He talked about ratios & percentages (things I had read but didn't completely understand) and made them understandable.

The worst part was when we learned that one of her dosages was completely wrong.  When Julia's blood sugar is high we give her a correction dose to try to bring her in range.  Whenever we would do this, she would end up going low and we would have to treat the low and give her a lot of food to cover the insulin in her system for correcting the high.  Sometimes this would work out and sometimes it would rebound her back into a high.  When our new doctor reviewed her correction dose, he said she was at an adult rate.  Yes, my petite 6 year old girl was taking an adult dose. This was a much bigger twinge.  This was a knife straight in my heart. 

We made the changes and left with the understanding that we would contact him and let him know how the changes were working out.  Within the first few days we started seeing great numbers.  I would email him what was going on & he would advise us of the tweaks to make.  He even emailed me first when I didn't want to bother him over the weekend.  

I really feel great now about the change we have made.  It has taken me a little while to get here.  I was really beating myself up for not changing sooner.  I questioned how much damage had been done & how much better she could have been feeling.  I was hurt.  We trusted our doctor to know the things we didn't and to be helping us learn the best things to do for her.  I am trying to not feel guilty and just look forward to how much healthier she will be now that we have made the change.