Archives for January 2014

When Routine Is Not So Routine

surgery2On Monday Isabella had two fairly routine surgeries…one to remove a small, pea-sized bump on the left side of her neck (she was born with it) and another to insert tubes in her ears (we wouldn’t have known about the fluid in her ears if she hadn’t see the ENT doctor about the bump on her neck!). As parents of a child with type one diabetes, you quickly learn that “routine” procedures are never quite routine anymore. You have to be prepared for everything.

Isabella had known about her surgery since the day she met with the doctor. She knew that the doctor would make a cut in her neck to take out the bump and also knew that he would put some tubes in her ears.  She understood all of this as we talked with her about it several times…yet I never really saw her show any signs of fear or anxiety. In fact, in the weeks leading up to her surgery, she loved telling her brother and sister that the doctor was going to remove her bump and put tubes in her ears. She told them as if to rub it in that SHE was going to the doctor and THEY weren’t (our kids love doctor visits!).

The night before the surgery I went to check Isa’s level before bed and heard her say in her sleep, “blah, blah, blah…tomorrow…blah, blah, blah.” At that moment, I knew that she was nervous about the surgery. I sat there thinking what a strong, brave and courageous little girl she is, a fact I’m reminded of on a daily basis. I corrected her low blood sugar, something that would be more difficult in another hour since she had to fast after midnight and up until the surgery (not an ideal situation for someone with T1D!). A few hours later she climbed into our bed with a fever, a cough and tears. She tossed and turned for the next several hours until we woke her to leave for the hospital.

We arrived at the hospital early in the morning, about two hours prior to her surgery.  After registering Isabella they called us to one of the hospital rooms where we met with a nurse.  She started asking us questions about Isabella’s diabetes. Isabella was being very quiet and shy.  Then we were visited by a child life specialist, who really made Isabella feel comfortable and she started to come out of her shell.

Unfortunately, Isabella’s cough had gotten a bit worse and her fever was starting to come back. The anesthesiologist expressed some concern and we thought that they might cancel the surgery. While we were hoping the doctors would make the best decision to ensure our daughter’s safety, we really didn’t want to reschedule the surgery for another day. Thankfully, they decided to move forward with the surgery.

The doctors and nurses “huddled” in our room…and discussed the surgery to align their team and also ensure that we knew what was going on. It was a bit unnerving because we really didn’t know up until that moment if she would be able to wear her insulin pump during surgery and recovery (which would have been approximately 3 hours without basal insulin from her pump); we were prepared for any scenario, including an overnight stay. Luckily, the doctors agreed she could wear her pump during surgery.

At this point, I checked Isabella’s glucose…she was at about 90, which is generally a decent level; but, she still had insulin on board, which meant she would be dropping lower. This was concerning, especially given the uncertain effects of the anesthesia and her cold. After a bit of discussion, the doctors agreed to let us give her about 2.5 grams of glucose gel, which we were hoping would be enough to combat the insulin, while they prepped her for surgery and hooked her up to an IV (which they could use to give her glucose, if needed).

As we weren’t permitted in the operating room this meant the anesthesiologist would be in charge of monitoring Isabella’s glucose levels and applying insulin, if needed. We knew she would be checked at least once per hour and they would handle corrections as needed, but we had no idea how her body would react to the anesthesia, so we were quite nervous. It didn’t help at all when the anesthesiologist turned to me and asked, “Can you show me how to use her pump?”

I nearly grabbed Isabella and ran for the exit! I took a deep breath and literally gave a 5 minute crash course on how to use her OmniPod. I really wasn’t feeling too good at that moment. I calmly began to explain all of the backup supplies in her kit, including the insulin pen in case the pod stopped working or in the event they had to remove the pod unexpectedly.  I felt like I was being rushed along since they were getting very close to the surgery start time. I kept thinking I was forgetting some important detail.

Surprisingly, I was not at all concerned about the actual surgical procedures they were about to perform, but I was terrified about the uncertainty surrounding Isabella’s T1D. As much as I tried not to think about it, I couldn’t help but recall the recent national news story about a young girl who went for a “routine” procedure, which ended tragically for her and her family. That was without T1D involved.

The anesthesiologist told us it was time for Isabella to go back to the operating room and be prepped for surgery. Isabella, of course, chose to have her mommy join her while they applied the anesthesia. I gave Isabella a kiss goodbye and told her I loved her and that I would see her soon. Isabella, Kristina and the doctor left the room and there I was standing all alone, with tears welling up in my eyes. I sat down and prayed that my little girl would be protected and that her doctors would make the right decisions to ensure a successful surgery and quick recovery.

A few minutes later, Kristina returned and we left for the waiting room. While we waited, we received periodic updates on the pager provided by the hospital. This was a nice feature as it kept us up to speed on the surgery.  That being said, I nearly jumped out of my chair the first time the pager vibrated. Luckily, it only read, “Surgery began at 9:59am.” About 30 minutes later, another alert read “Patient still in surgery. Everything’s going well.” Everything’s going well! What great news!

It wasn’t until after the surgery when we met Isabella in recovery that the doctor told us that her blood sugar dropped to 60 during surgery, at which point they started glucose through her IV drip and she began to slowly climb back up. It was probably a good thing that we didn’t know that as we would have both been a nervous wreck.

Isabella was sleeping soundly and looked so cute laying there. I sat there watching her sleep with an IV, heart rate monitor and various machines beeping in the background.  My mind immediately took me back to August 28, 2012 when Kristina and I sat in a similar hospital room in Mexico City shortly after Isa was diagnosed with T1D. Seems so long ago.

Then Isa started to move around a little bit as she was waking up. I jumped up from my seat and gave her a kiss on the forehead and told her she did so well and that I was so proud of her. The nurse said we could pick her up and hold her. Isabella, of course, wanted mommy to hold her (I’m sensing a pattern here!). She was very happy when they brought her a “purple-flavored” popsicle, her first meal since the night before.

All of the nurses and doctors kept commenting on how mature Isabella is and how much older she seems. Unfortunately, her life is not that of an average child due to her T1D. She has been forced at such a young age to exhibit strength, bravery and courage that most adults, including myself, have not had to deal with in their lifetimes.

I am truly Inspired by Isabella. Are you?
~Greg

Reflections From A Substitute, Substitute Pancreas (AKA: Aunt Shelly)

As we sat in the airport club waiting to board our flight to Las Vegas…our first trip away from our children and since Isabella’s diagnosis…I sent a quick text to Isa’s Aunt Shelly: “Would you be interested in writing a guest blog about your experience managing Isa’s diabetes this weekend?” Her response: “That would be awesome.”  So, here you have it:)
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Isabella and her Aunt Shelly

Isabella and her Aunt Shelly

Last summer my brother asked me if I would watch the trio so he and Kristina could have a long weekend away.  “Absolutely,” was my response.  In December, Greg decided to surprise Kristina for Christmas and take her on a 4 day trip to Las Vegas right after New Year’s and asked if I was sure we were ok with watching the kids.  Again – “absolutely,” I said. I realized that I would be charged with not only adding three 3 year olds to our family of 4 kids, but I would be managing Isa’s T1D. The fact that I was entrusted to take care of Isa was an honor that I didn’t take lightly. I knew I was up for the challenge and off they went…..

Greg and Kristina dropped the kids off on a Wednesday night and thus started Isa’s monitoring.  I was given some base numbers to decide if I should check her in the middle of the night or not, but had already decided that I would feel better just getting up and checking her to be sure all was ok. This meant that I would be checking her around 11:00pm before I went to bed, and then setting my alarm to check her at 3:00am.

Over the next few days I realized that having T1D is very much like having a newborn again. Her glucose must be checked every 2-3 hours and she eats something after each check while inputting her carb counts into her OmniPod insulin pump.  I’ve never had to worry about what food or snacks to give my own children. I just feed them whatever we are having and if they want a few cookies after dinner then so be it.  With Isa, that is so different. I wanted to ensure that each meal and snack had what she needed to keep her levels in check. Overall, I think it went pretty well. She had a day of some higher numbers that really couldn’t be explained unless it was from the one small cookie that she had the day before. She also had some lower numbers in the middle of the night that I offset with some glucose gel to ensure she didn’t drop too low before she awoke. I now know that sometimes, no matter how accurate your carb inputs are or how much you do right, you just can’t explain some of the high and low numbers.

Throughout the 4 days everyone in the house was checking Isa’s glucose for her and at one point she said “Aunt Shelly, none of my cousins are checking me today.” She loves her cousins and definitely feeds off of the attention they give her.

On Saturday morning I was cleaning up from breakfast and all the kids were in the basement playing. I went down to see what they were doing and they were all lined up in front of Isa. I was told that she was “checking” everyone’s levels. It was so cute that they were all pretending to have their fingers pricked, but also sad when I thought about the reality of this for Isa.

Isa had to have an insulin pod change while she was with us as they expire after 3 days. We started the process and she was very positive. She told me it would hurt when the needle went in. I asked her to squeeze my hand to help her. She didn’t even flinch and had not one tear.  That was a proud moment for me.

The day came for Mom and Dad to pick up the kids and I must say I was a bit sad.  As busy as we were taking care of all of them and especially taking care of Isa, I felt a bit empty at their leaving.  I feel honored that I would be trusted to take care of Isa’s life because that’s basically what I was in charge of. Isa’s levels must be monitored constantly and the insulin she receives keeps her alive. I have a whole new respect for this little girl. While she has T1D, the reality is that she’s just a little girl that doesn’t really have a clue of the enormity of the card she has been given in life. I am confident that her independent attitude will take her wherever she wants to be. She lights up the room with her laughter and smile. I will be right there with her along this journey and am thrilled that I get to be her aunt.

What Faith Feels Like

faithFebruary 2010.

This was the last time we traveled anywhere together. No kids. No diabetes.

Fast forward to last week as we dropped the kids off at their aunt & uncle’s house and waved goodbye for 4 days.

Rewind just a bit to the two hours leading up to the drop off as we prepared bags for 3 toddlers…

“Do you have extra test strips in there?”

“The insulin in the kit won’t be enough for two pod changes…actually we should probably have enough for 3 just in case we have any pod failures. Oh, that means we should put a few extra pods in the bag.”

“Are there any alcohol wipes left in the pump kit?”

“I need to make the food list with carb counts…I’ll just send the pre-measured snack bin…that’ll be easier.”

Notice a trend? Not a single discussion about normal toddler essentials…pure “diabetes preparation panic” talk. No discussion about blankies or dolls, tooth brushes or diapers. Just straight “are we really sure we can put all of this responsibility on someone else?” talk.

But we did.

And you know what?

Aunt Shelly & Uncle Roy (and some Grandma Dar Dar thrown in!) rocked it.

We learned a big lesson this weekend about trust and faith. I’ve told people many times that when the nurse came in to our hospital room after Isabella’s diagnosis and said we could go home, I couldn’t believe it.  They were letting us LEAVE?!? I was terrified.  How would we possibly know what to do? How could they possibly believe we could manage this disease that we’d just met 4 days earlier? Did they not realize they were putting us in charge of our daughter’s LIFE?!?

A year and a half later I now know how they were able to let us leave that day: they had FAITH.

The first time your parents let you board that yellow bus…they had faith that the driver would get you to school safely.

As they handed over their car keys as you head out for your first solo drive…they had faith you wouldn’t believe the old “stop signs with a white outline mean ‘PAUSE’ myth”.

When your college roommate asked you to go to that party with her…she had faith you wouldn’t let her make bad decisions.

Stepping into your classroom as new teacher…your principal had faith you’d make a difference in your student’s lives.

Delivering your first child…you had faith in the doctor’s “Water Balloon Toss Champion – 1981” trophy displayed in his office.

I believe that parents are always nervous the first time they leave their child or children in someone else’s care.  The reality is that if we spend our lives worried about the “what ifs” with any of our children, we may never know what the “could’ve beens” might be. There exists so much uncertainty raising children, T1D or not, that it could very easily consume your every moment in life. We’ve chosen not to let it. We’ve chosen to trust and have faith that if we can learn how to manage Isabella’s diabetes, others can, too.

In fact, doesn’t it make sense to teach everyone in the canoe how to row? Let me know if you need a paddle. 🙂

Cheers to Changing the World~
Kristina