If you're like so many people I know, you're battling a weird spring virus or someone you know is dealing with an awful cold or cough. We got hit hard last week when Luke got nailed with the double whammy of strep throat and croup. I've honestly never seen him so sick. He curled up on the sofa with glassy eyes and a sweaty head begging for me to watch ESPN with him. So I did. It's what parents do. At its worst, he was up all night with a fever that wouldn't relent. We gave the advil/tylenol combo but it wasn't helping. Poor Tom looked at me at one point and asked if that was all we could do. It was but that was little comfort to Luke or us.
So it was only a matter of time before Grace got hit with something. Between a nasty virus and a highly contagious bacterial infection, odds were, we were in for something. On Tuesday she woke up complaining her head, stomach, and throat hurt. Her head was scorching hot. I had an "oh shit moment." I tested her blood sugar-high. I tested for ketones-raging purple. We've dealt with little bugs in the past that gave us some ketones and high sugars but nothing like this. Rather than pull all my "what to do materials" from CHOP, I just decided to page the doctor. We got lucky. Our doctor was on call.
He walked me through everything we had to do. I tried to not sound panicked but I'm reasonably sure the doctor realized I was. I could tell he was deliberately speaking slowly-asking me to repeat information back to him. He asked if Grace could eat something. I asked her and she weakly replied, "no." The doctor had heard and he said "oh, that doesn't sound like the Grace I know." He gave me a plan of action that basically involved lots more insulin through the pump and lots of fluids. Grace couldn't move from the sofa. I'd page him in a few hours to give him an update. If the ketones weren't clearing out, we'd have to talk about a visit downtown.
We spent basically two days like this. We repeatedly saw blood sugar numbers in the 400s and yesterday we even hit 502. The 502 sent me over the edge. She didn't have ketones but a 502 (when normal is around 100) was just not good. Our doctor encouraged us to page him any time we had questions. He got back to us immediately and we made a few more changes to the pump but essentially he said this is what to expect when a diabetic child gets sick. While it's certainly not "normal," it is normal in the world of diabetes. I was so frustrated at this point. Not only was Grace sick with an awful virus, but she was also hit by the truck of diabetes. It was infuriating. I just began spewing everything I was feeling and Dr. G just quietly listened. I asked if he thought I was being over reactive, overprotective, and basically a spaz. His immediate reply was a very firm, "no." He said he is the first to say "don't let diabetes run your life. Don't let it take over. Don't let it slow you down." But he said in this situation he would be the first to say, "Respect the power of diabetes-it's time to slow down and handle this carefully. This is serious stuff." We probably spent another 10 minutes talking-him reassuring me all would be ok. If I had the slightest question or doubt-page him. His last words were, "You are doing awesome. Hang in there."
We do spend most of our time pushing past diabetes. Grace most certainly doesn't let it slow her down. I try not to give it too much space and, honestly, most days it's just an annoyance and great sucker of time. But seeing what this thing can do-how quickly things can get really dicey- definitely made an impression on me. Grace weathered it well. While annoyed and frustrated, she seemed to like the mom time she got and the gummy worms for doing a good job at the doctors. This morning when she left for school she looked beautiful-happy and smiling and full of silliness (while Luke whined and carried on about something-you can't win them all). I'm hoping this thing is done and we can just move on. It was awesome seeing Grace run out the door for school. After she left I thought it was funny how excited and full of energy she was when all I could do was stare at the coffee pot wishing it would magically produce more. It's going to be that kind of day-maybe for a few days.
Thursday, May 17, 2012
Friday, May 4, 2012
Just Keep Swimming
I had this profesor in college who was famous for raking students over the coals. He sensed weakness and pounced on it. If you had not seriously prepared for class, he would tear you apart. It was like sport to him. I loved it.
One day I was caught unprepared and the glee this man took in seeing me stammer was disturbing. He announced to the class, "Lawrence is frantically treading water in the deep Atlantic waters-don't any of you throw her a life jacket." I can laugh about it now. After years of therapy.
This "treading water feeling" is how I've felt lately with Grace. Life on the pump continues to be awesome for her. I know she has no regrets or questions about whether it was the right choice. But this past week was completely awful. Her numbers were all over the place and as much as I studied them, they were just not making sense. She's high, she's low, dear God she's really low. That was our week.
We had our check up with our favorite doctor yesterday and he got me back on course. He had pushed from day one to get Grace on a pump and he is so, so excited we made the move. He asked LOTS of questions about what we like and don't like. He's a really good listener. He totally sympathized with where we are in the process. I think Tom and I were obviously flustered while we delineated all our issues with pumping. While we talk, it's very hard to not get preoccupied with Grace to make sure she is ok. Grace is always curiously quiet in these appointments. Yesterday she was content to create an intricate doodle while we talked. I encourage her to talk but for now I think it's important for her to find a way to deal with these long appointments filled with crazy medical talk.
A cool feature of the pump is the ability to upload all Grace's data to a web site that the doctor can then access. We looked at the data and it was comforting to hear him say, "Oh wow, she is kind of all over the place." He walked us through how to read the data (less of a problem for Tom, more of a problem for me). Then he came up with a plan. We'll tackle one set of numbers at a time making very small changes as we go. But he also encouraged us to take control of the pump. He wants us to build confidence with our decisions and feel comfortable making adjustments--as long as we do it slowly and methodically. Once a week he wants us to upload Grace's data and he'll take a look. He wants us to include what's going on with Grace. Has she been unusually active, unusually quiet, fighting off a bug, etc. We'll include our thoughts on what changes should be made and he'll review them. That giant breeze that overtook the Delaware Valley at 2pm yesterday? That was me-exhaling.
We also learned our doctor will be staying on for 2 more years. This was even more relief. Most patients see nurse practitioners. In fact, I know of no other T1 kids at CHOP who see a doctor. CHOP has a fellowship program that trains doctors to be pediatric endocrinologists. I knew in the back of my head that at some point the program must end and we'd lose our doctor. I feel extremely comfortable communicating my frustrations with him and I feel like, over the past almost year now, he has a good feel for how to communicate with me. I've said this before, but one of the major frustrations of diabetes is its unpredictability. To know we have some stability with our doctor is also a relief. I left CHOP relieved-relieved for stability and for the guidance CHOP continues to offer us. I always leave there feeling like we're not alone, like we can do this another three months. It sounds weird but I actually love the time I have with Grace after our appointment is finished. She babbles away in the backseat about music, school, life. It's extremely cool the way she wants to talk to me about whatever is on her mind. If diabetes is on her mind (which I don't think it is), she doesn't mention it. It's just a return to normalcy-back to our regularly scheduled program.
One day I was caught unprepared and the glee this man took in seeing me stammer was disturbing. He announced to the class, "Lawrence is frantically treading water in the deep Atlantic waters-don't any of you throw her a life jacket." I can laugh about it now. After years of therapy.
This "treading water feeling" is how I've felt lately with Grace. Life on the pump continues to be awesome for her. I know she has no regrets or questions about whether it was the right choice. But this past week was completely awful. Her numbers were all over the place and as much as I studied them, they were just not making sense. She's high, she's low, dear God she's really low. That was our week.
We had our check up with our favorite doctor yesterday and he got me back on course. He had pushed from day one to get Grace on a pump and he is so, so excited we made the move. He asked LOTS of questions about what we like and don't like. He's a really good listener. He totally sympathized with where we are in the process. I think Tom and I were obviously flustered while we delineated all our issues with pumping. While we talk, it's very hard to not get preoccupied with Grace to make sure she is ok. Grace is always curiously quiet in these appointments. Yesterday she was content to create an intricate doodle while we talked. I encourage her to talk but for now I think it's important for her to find a way to deal with these long appointments filled with crazy medical talk.
A cool feature of the pump is the ability to upload all Grace's data to a web site that the doctor can then access. We looked at the data and it was comforting to hear him say, "Oh wow, she is kind of all over the place." He walked us through how to read the data (less of a problem for Tom, more of a problem for me). Then he came up with a plan. We'll tackle one set of numbers at a time making very small changes as we go. But he also encouraged us to take control of the pump. He wants us to build confidence with our decisions and feel comfortable making adjustments--as long as we do it slowly and methodically. Once a week he wants us to upload Grace's data and he'll take a look. He wants us to include what's going on with Grace. Has she been unusually active, unusually quiet, fighting off a bug, etc. We'll include our thoughts on what changes should be made and he'll review them. That giant breeze that overtook the Delaware Valley at 2pm yesterday? That was me-exhaling.
We also learned our doctor will be staying on for 2 more years. This was even more relief. Most patients see nurse practitioners. In fact, I know of no other T1 kids at CHOP who see a doctor. CHOP has a fellowship program that trains doctors to be pediatric endocrinologists. I knew in the back of my head that at some point the program must end and we'd lose our doctor. I feel extremely comfortable communicating my frustrations with him and I feel like, over the past almost year now, he has a good feel for how to communicate with me. I've said this before, but one of the major frustrations of diabetes is its unpredictability. To know we have some stability with our doctor is also a relief. I left CHOP relieved-relieved for stability and for the guidance CHOP continues to offer us. I always leave there feeling like we're not alone, like we can do this another three months. It sounds weird but I actually love the time I have with Grace after our appointment is finished. She babbles away in the backseat about music, school, life. It's extremely cool the way she wants to talk to me about whatever is on her mind. If diabetes is on her mind (which I don't think it is), she doesn't mention it. It's just a return to normalcy-back to our regularly scheduled program.
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