Wednesday, February 29, 2012

Patient Responsibility...And a Baby Update, Of Course =)

My last posts haven't had as much to do with diabetes as much as with my pregnancy and subsequent labor/delivery, so today I thought I'd go back to my roots for this one...although I'll preface with a baby update =)

Our little one is doing great--at five weeks old, she's growing and changing every day!  I was looking at some pictures of her from while we were in the hospital and right after we brought her home, and I was amazed by how different she looks already.  I also can't believe that she's already five weeks old...the time is already going by so fast =(  We had our first health scare last week when our baby girl started coughing at night, but luckily a trip to the pediatrician (an hour and a half away) relieved our fears--she just had a head cold, and the cough was from the accompanying drainage.  Nonetheless, I was glad to have answers since we were told that while sneezing in a baby was normal, coughing was not.  Not to mention that there's so much sickness going around right now...even though we've made it a point to stay home during these vulnerable first weeks, we still have visitors and can't avoid being in public for checkups and the like.

Even though I didn't think it was anything serious, I couldn't help but worry about her--especially since I'm at home with her most of the day by myself with only my thoughts to keep me company!  I know it's only the beginning of parental worry, but that doesn't make it any easier to deal with...even as we sat in the (sick) waiting room of the doctor's office, I couldn't help but think that if she wasn't sick to begin with, she might be by the time we left due to the older kids who were coughing around us!  Thankfully, though, everything turned out fine.  At the end of the week, I had to go back for my postnatal checkup where I had an IUD (Mirena) put much as we love our little bundle of joy, I doubt we'll be ready for another one for a couple of years!

While we were in the waiting room, I had to buckle the little one back into her car seat since I'd just put her in there after feeding her in the parking lot before the appointment.  I quickly realized that was a mistake, because as soon as she was uncovered, a woman with her pregnant daughter and two-year-old grandchild came over to investigate.  I know it's a first-time parent thing, but it took everything I had to not go all "mama bear" on them as the grandmother kept pushing the toddler towards our car seat telling her to "look at the baby!"  I simply finished buckling her in while my mom answered their questions, and bundled her back up!  Let me just say, I have no problem with people I know getting close to or holding our little one (as long as they're not sick and their hands are clean!), but random strangers?!  I'll be the first to admit it freaks me out, and I won't apologize.  After all, how do I know that the toddler wasn't sick?  It may sound a little extreme, but pertussis (whooping cough) can kill a baby our little one's age, so until she can get her first dTap vaccine (at two months), she's vulnerable...and it's our responsibility to protect her.  For that reason, we're following our pediatrician's advice of keeping our baby girl away from public places (and other young/unvaccinated children) as much as possible until the two month point...which means no church, grocery store/Walmart trips, or hanging out with our friends and their kiddos.  It's hard, but at this point our social life is much less important than keeping the little one healthy!

Okay, now that we've got all of that covered, down to business =)

I placed an order for glucose sensors for my CGM (Continuous Glucose Monitor) on February 10th, but never received notification that it had shipped.  On Monday, I called Medtronic and found out that the holdup was that my endocrinologist hadn't faxed the certificate of medical necessity back to them.  After having Medtronic re-fax the form, I called my endo's office to confirm they got it and let them know that I needed them to fill it out and return it ASAP...our new insurance year begins March 1st, so I needed to have my order shipped by today in order for it to be covered under this year, for which we'd already met our (ridiculously high) deductible.  They said they would get it taken care of, so in the meanwhile I checked the status of my order online on a regular basis.  By today, I was starting to get nervous.  I called Medtronic back to find out why my order still hadn't shipped, and found out that my endo hadn't checked the CGM box on the prescription form, so they were going to have to fax it to them once again to be signed.  This afternoon, I called the endocrinologist's office to make sure they received it and to give them the instructions on properly filling it out and sending it back.  A while after that, I called Medtronic (again...thankfully you get to talk to a different person every time, otherwise I'm sure they'd be tired of me by now!), only to find out that it would take 24-48 hours before the prescription certificate would be reviewed and scanned into their system.

As a result, I was forced to cancel my order...there was just no way, with the medical bills we're fixing to have to pay from the c-section and hospital stay and my husband's taxes that will be due in April (on top of our usual bills, baby stuff, and my insulin pump supplies, which run $492.80 every three months), that we need another $1,000 (the rough amount we'd be responsible for with the 20% insurance discount for my three boxes of glucose sensors) to worry about paying.  My parents offered to help, but I don't feel like that's their responsibility.  So right now, I'm disappointed and frustrated.  Disappointed that I'll soon run out of sensors, because even though I only use them occasionally now, they're super helpful in keeping an eye on my blood sugars as well as in adjusting insulin rates.  Frustrated (extremely) that everything was finally resolved to get my order out one day late, which is just my luck--a day late, a dollar short!

I'm mostly frustrated with my endocrinologist, because I suspect that the reason my form wasn't filled out and returned sooner is because he was on vacation (several members of my family also see him, and their stuff was just taken care of yesterday as well).  I have nothing against vacations, of course, but it would have been nice for his office to have called and let me know so I would have known why my order was delayed for more than two weeks.  Now I'm stuck with no sensors, which admittedly aren't as much of a necessity now that I'm no longer pregnant, but are still an integral part of my diabetes management...unless we end up meeting our deductible elsewhere, which is unlikely since my insulin pump supplies for a year don't come close to that amount, or I order a smaller quantity of supplies at a time.  I guess we'll see what happens!

Probably the suckiest part about the whole ordeal is the realization that I wouldn't have even known why my order was held up had I not been persistent about getting to the bottom of it.  As if living with diabetes isn't hard enough, I hate, hate, hate having to deal with the financial and political parts that come along with it...and on the spectrum, I'm very active in my health and d-management.  I sometimes wonder how people who aren't as involved in their healthcare do it, because I have to be very on top of things to ensure I get the care and everything else necessary to manage this disease.  It certainly begs the question of how much responsibility a patient should have in their healthcare, especially when a disease like diabetes (and insulin!) is involved...I can't help but question whether all PWD have to deal with the same things I do, or if doctors simply evaluate how much freedom (and therefore responsibility) to give their patients on an individual basis.  I honestly believe it's the latter, because I know that my endocrinologist has been pretty laid-back as far as how often he sees me (every quarter, even during my pregnancy, whereas he saw my sister every month or so during hers, and my next visit will be five months from the last...) and the level of control he gives me over my own d-care--I make the necessary changes to my insulin rates based on my blood sugar logs, and contact my CDE (rather than my endocrinologist) if I run across any problems.

I know from reading other diabetes blogs and from other PWD that I know personally that the level of control patients are given varies greatly, but sometimes I wonder if some of us are given too much responsibility when it comes to making sure things happen the way they should regarding our healthcare issues...I know in this instance, I would have rather not had to taken so much time and put so much effort into finding out why my supplies hadn't been shipped!

Saturday, February 18, 2012

An Eventful Delivery of a Precious Package

My last post was a little over a month ago, but I promise I have a very good reason this time...our sweet little girl is almost four weeks old!  Everything I last wrote about seems like it happened in a different lifetime, because there is now a very clear distinction between our lives before and after baby...and I honestly can't believe how quickly time is flying by now that she's here!  Speaking of which, I'll fill you in on the crazy journey that was her arrival...

As most of you know, we were scheduled for a c-section on January 25th.  The day before, we were supposed to go for my last ultrasound and OB visit to confirm that our little one was still breech and to go over any last-minute details and questions.  However, we never made it that turns out that my mom's "feeling" that she would come before then was right!  Around 2:30AM on the 24th, my water broke.  After waking up my husband (whose first question was, "Are you sure?"...Yes, honey, I am positive that the huge gush I just experienced wasn't courtesy of my bladder!) and calling to talk to the doctor on call, we finished up packing the last few things so we could begin the hour-and-a-half drive to the hospital.  The OB I talked to told me there was no reason to rush; that once we got there, they'd just plan to call our doctor and we'd do the c-section around 7:00 that morning as long as everything looked good.

While we got our things together, however, I started having contractions...contractions that were three minutes apart.  I still didn't think much of it; after all, contractions were supposed to be irregular at the start of labor, right?  We got everything (and ourselves) loaded up in the car and took off.  Since we didn't think we were in much of a hurry, my hubby drove 75 the whole way, just five miles over the speed limit.  Meanwhile, I was trying to hold it together and deal with the pain by breathing deeply.  That worked for a while, but my contractions just got stronger and stronger and were definitely closer together...they were two minutes apart and a minute long the entire way.  By the time we were 30 miles away, I was having a hard time dealing with the pain; when we got into town, I was thinking that I would definitely need an epidural if I was going to go through that for a few more hours!

When we arrived at the hospital, we parked in front of the ER entrance and grabbed my file folder of paperwork out of the car.  Apparently, the triage nurse could clearly tell I was in active labor, because we were admitted instantly and taken up to the labor and delivery floor (fastest ER visit I've ever had!).  Once we got to a L&D room, the nurses started prepping me for surgery and asking me a million questions.  I was in A LOT of pain, and the nurse starting my IV had to keep reminding me to breathe deeply.  They were debating on whether or not to check me to see how much I was dilated, but decided since I'd be having a c-section there wasn't any need.  Right after that conclusion, however, I started to feel some pressure.  Once I told them that, one of the nurses did a cervical exam and announced that I was in, completely dilated, all 10cm!  (Oh, and she was still breech...which turned out to be a blessing in disguise, because if she'd been head down, she probably would have been born on the road somewhere between home and the hospital!)  At that point, things started moving a lot quicker (and they told me not to push), but I still had to sign more paperwork before they took us back to the operating room...I'm pretty sure my signature was unrecognizable as my own, but I was in so much shock at how quickly everything had progressed that I honestly didn't care!  I just couldn't believe that I'd progressed from 0-60 (relatively speaking, not literally of course!) in just a couple of hours, especially since first labors are supposed to be much longer, on average...Then again, nothing about me ever seems to fall on the "normal" side of things =)  Either way, it explained why I was in so much pain...which, I'll admit, did give me a certain sense of accomplishment since I wasn't sure if I'd be able to handle labor without medication!

Once we got back to the OR, they transferred me to the operating table and quickly shaved me and got everything prepped for the c-section.  Luckily, the anesthesiologist was waiting, so between (super painful) contractions, he did his thing.  (The spinal, by the way, was a breeze...I've had insulin pump sites that were more painful, although I'm sure it seemed a lot less so in comparison to my contractions!)  I was then able to lay down, and felt one more contraction before everything from the waist down went gloriously numb.  Meanwhile, my hubby was scrubbing in for the delivery.  He had planned to watch the c-section, but after everything had gone so quickly, he just wanted to be by my side through it all.  The nurses in the delivery room were joking that they'd have to teach him to deliver babies for our next children, since they always say subsequent labors go faster than the first--yikes!

Up to that point, I'd been wearing my pump and CGM and had been checking my blood sugar every so often so I'd know where I was.  Since I had been consistently around 110 throughout labor, I wasn't worried at all about my blood sugar during surgery; however, things in that respect unfortunately didn't exactly go as planned.  My doctor had given me the go-ahead to keep my pump on throughout the whole process and my CDE was going to be on site in case the anesthesiologist had any questions or problems with it, but since neither of them were there at 5:00 in the morning, I was left to hash out the details with them myself.  The anesthesiologist, though very, very nice and wonderful at his job, didn't like the idea of keeping my pump hooked up, so I had to take it off.  By the time I was in recovery, I think my blood sugar was around 140 (if I remember correctly).  Due to that fact, our sweet little girl's blood sugar was low upon her arrival into the world, something I never thought we'd have to deal with since my control had been so good through the entire pregnancy.

Other than that, however, we were incredibly blessed to have a perfectly healthy baby girl!  My husband got to watch them examine her while they stitched me up, and even got to have her little feet stamped on his disposable scrub shirt...he is so proud of that keepsake!  After they cleaned her up, I got to see and kiss her before they took her to the nursery and wheeled me to the recovery room.  They eventually brought her to me in there to breastfeed in an attempt to raise her blood sugar, but ended up having to give her some formula to do the trick.  For the first 24 hours, they checked her blood sugar each time I fed her and had orders to give her an ounce of formula if it was low again; luckily, however, we never had to do that.

The first two nights, my blood sugar was running so low that I set a zero basal rate and stayed around 100.  It's amazing how much easier my blood sugar has been to manage since delivery, other than the fact that I've had plenty of lows.  I've just tried to stay on top of changing my rates accordingly, and everything has gone relatively smoothly d-wise!

I have plenty more to tell about our new life, but I'll save that for later.  Right now, I'm going to enjoy holding our precious baby girl!