. . . .getting to know all about you. This is the way I feel about Grace's pump. So many of you have been so nice to check in and see how things are going. I know a lot of you are curious to hear about our experience so far. Sorry it's taken me so long to post an update. The truth is, life with the pump is crazy, unpredictable, awesome, and frustrating.
Here is the awesome: Grace loves her pump--completely, totally adores it. All of our fears of her freaking out and not wanting to wear it have not come to fruition. From day one, she clipped it on her pants and went on her way. We change her site every 2-3 days and that could be going smoother. She squirms and gets really anxious. Once it's over though, it's done.
Here is the frustrating: it's not like you just get hooked up to the pump, CHOP plugs in some numbers, and there you go. Enjoy! Our doctor sent me an email before we started pumping full of "you'll be frustrated" and "lots of sleepless nights" and "sometimes wishing you could go back to shots." I gave that a big ole whatever. We'll be fine! We're diabetes superheroes! We're so smart we'll figure this thing out in a day! And, to a certain extent, I believed that to be true the first week.
And then Grace's sugar began dropping and dropping and dropping. And then her night time sugar began climbing, and climbing, and climbing. And then I realized what the doctor said was true. This thing requires a lot of work to get right. The wonderful thing about the pump is you can adjust Grace's insulin all day long. Having an active morning, let's cut back on the insulin a bit. Having a waffles for breakfast, let's crank the insulin for a bit. Going high over night, let's see if we can get that back in range. But in order to get things just right, you fail. You almost kind of have to fail to realize where the pump settings need to be. That means Grace will go low and Grace will go high as I attempt to find just the right dose to keep her where we want to be. That means checking her sugar around the clock, getting constant updates from the school nurse, looking at numbers, and trying to identify trends. You make changes but you make them ever so slowly. I try not to get mad at myself when the numbers don't work out. I inhale, exhale, repeat. I'm tired. I haven't slept through the night in I don't know how long. It makes me irritable and, honestly, a real joy to be around. Ask Tom.
Sometimes things go wrong and they go wrong in a bad, bad way. Grace was in the 300s all night Wednesday. I figured we just needed to crank the insulin a bit more. But when she woke up she was still in the high 300s and it was climbing. I had a major "oh shit" moment and realized her pump wasn't working. I pulled her site and saw the tube that delivers her insulin (canula) was bent at a 90 degree angle. Essentially no insulin got into her all night long. I knew to test for ketones (the nasty acid that builds up in your body if you have no insulin). In the past, we've had experience with mild ketones. But as soon as I dipped the stick in Grace's pee it turned hot pink. Another oh shit moment. It's extremely easy for kids (and adults) on the pump to get ketones. It's also extremely dangerous. Too much ketones leads to bad bad things that I won't think about it. CHOP trains you for this in their classes so I knew what to do. Unfortunately, it's a lot of sitting and waiting to see if things are working. Grace was tired, her stomach hurt (if she started to vomit we'd be on our way to CHOP), and headachy. We sat and watched a movie and I hoped for the best. By noon, she was fine and back to school. Again, I inhaled, exhaled, repeated.
To bring Grace's sugar back in range, I had to stop the pump and give her a syringe shot. Her reaction to the shot confirmed for me why the pump is right for us. She sobbed, was angry, and adement she would not go back to shots. I feel the same way. I like what the pump has to offer us despite all the work we're putting into it. It's a challenge-like a giant puzzle with multiple moving pieces and those pieces change every day. I've never been a fan of puzzles but I'm working on this one, talking to CHOP, other T1 parents, and reading as much as I can. I'm confident we'll get this. In the meantime, patience has to be the name of the game.
Friday, April 27, 2012
Friday, April 13, 2012
Wednesday was pump day for Grace. We practiced for a week with saline which felt like a lifetime to her. We still had to give shots but we also had to use the pump to get the hang of it. Every day Grace whimpered, "I can't wait for Wednesday. No more shots." She was so excited for Wednesday, she woke at 6:30am and went charging down the stairs like it was Christmas.
We headed down to CHOP bright and early. We waited for a bit and Grace had fun playing with a little guy who was maybe 18 months old. He dropped his dad's jacket on the ground, Grace laughed at him, repeat. And then his mom had to check his sugar and Grace said, "I didn't know babies could get type one." It was sobering but I encouraged her to get right back to the game. Don't let diabetes stop the fun. I put on the smile while inside my heart broke. Such a little guy.
We met with our pump teacher and ran through a site change. Grace had done really well with these in practice. Basically a long needle punches a soft tube under the skin which is held there with adhesive. The needle is in and out quickly but it freaks Grace out (me too). When I went to do the site, Grace howled. I missed going in and the needle scraped across the top of her skin. Grace was not happy with me. Not happy at all. Our nurse convinced her it was no big deal, happens a lot, and maybe I deserved a second chance. I nailed the next one but not without a giant eye roll from my darling. I have no idea where she learned to roll her eyes like that.
After that, we were on our way. The smile on Grace's face--I can't even express how beautiful it was. She was just so proud and relieved. I think we were both relieved. I was completely spent after our appointment. I hadn't slept well the night before. I've been anxious about our transition and, generally speaking, a stress case. We were meeting Tom in Old City for lunch but had some time to kill so we hopped a cab over to Rittenhouse Square and Barnes and Noble. I desperately needed coffee.
We got all settled with coffee and snacks when I heard a familiar voice, "Well, hello there." It was my dissertation advisor, mentor, and dear friend who was also having coffee. I could have cried. Allen looks a lot like the old guy from the movie Up--only not quite as cranky. We spoke for a while about history, life, kids. Grace said she wanted to buy a journal because she likes to write. Allen said he wasn't surprised. Our conversation calmed me--he always had a knack for that- a knack for refocusing me. He smiled so warmly at Grace and assured me Children's Hospital never, ever lets you fall. Grace got fidgety so we were on our way. Our conversation allowed me to exhale-like seriously exhale.
We whizzed around the city again but got to Old City early. Grace thought all this cab stuff was completely awesome. We had some time to kill so we headed down Second Street. We were walking along and Grace says, "Mom-what's this funny little street?" I had totally set her up. I knew if we walked past Elfreth's Alley she would be curious. We ducked down the street and Grace wanted a quick tour. Our guide asked us how much we knew about Philly history. I responded, "not much." Grace whispered, "MOM" and gave me the squinty eye look. I made she "shhh" motion and it was our little secret. Grace giggled. She loved the tour and then we had lunch with Tom. It was our first meal on the pump and it was just so, so easy. No tears, no worry that someone would stare while we gave a shot, no concern that the dose wasn't right.
When we were finally on our way home Grace asked if she could listen to Selena Gomez. She was totally rocking out when she said, Mom-turn it down! You know what? This was the best day ever! No more shots, a new book, seeing your friend-he looked old-how old is he?-the little houses, lunch with dad. I can't believe how good this day is!" It really was a great day. To see Grace so, so happy after enduring so, so much crap from diabetes made me smile, too. The pump doesn't fix everything diabetes throws your way. But it sure does make things a little easier.