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