PUMP!

And the hits just keep on coming...

So, I am officially done (for the time being, I hope) feeling sad. That 23 blood sugar kicked me in the gut. It is hard to grasp the severity of diabetes until it kicks you in the gut. But, I have learned from my mistake and have talked myself into being more cautious and awake, versus obsessive and overprotective. 

However, it is a constant battle reminding myself to be the first two. The last two are comforting to me, but are not good for Rocco. The last two will cause him to become fearful instead of independent in his adult life. So, I will do like so many mothers before me have done, chalk it up to a learning experience and move on. I hope...

Anyway, last weekend we decided to go on a little vacation. Going on vacation to us, a family who has a child with type 1 diabetes, always seems scary. So many things can go wrong and vacations add so many variables into what usually is a regimented and controlled lifestyle. Many parents of type 1 diabetic children just put vacations on the back burner for another day. 

We were thrilled to hear that Michael's two brothers, with families in tow, and my in-laws had rented a house at a beautiful resort about five hours from our home. Five hours with no flights, we can handle. Finally a real vacation. Albeit close to home, but still a vacation! 

We drove the five hours, checked in, changed into our bathing suits and went straight down to the lake. I was in charge of the kids because Michael had to park the car in an lot about a 15 minute walk away. 

 

I placed our chairs on the beach and was trying to help the  family get settled, not really paying attention to the kids who automatically ran into the lake and started swimming. After a few minutes Rocco ran up to me to ask if I had brought his Boogie board.  I told him no and he ran back into the water.  Thirty seconds later he ran up to me and asked for his goggles. Nope! Forgot those too. Really? I wonder why am I am still in charge of his stuff ?  He starts to run off again and I see it! The bulge under his shirt that is his insulin pump around his waist that has now been in the water for about 6 minutes and is NOT waterproof! 

"ROCCO!" I yell. "PUMP!" he looks down and starts to immediately take it off as fast as he can. I can see the wheels spinning in his head. He understands the severity of the situation. 

He hands it me. "Is it ok Mom?"  I look at the screen. I see a tiny drop of water behind the screen but I push the buttons and it works. Thank the Lord Almighty!

"Phew! Close one." he says. 

I put it in our bag and start to talk with my sister-in-law while my head is still reeling with the drama. 

But then I hear and feel it. "buzzzzzz, dodododododod, buzzzzz". Crap! 

I pull the pump out of may bag and it reads Button Error. I had never seen the "Button Error" message before. I calmly grab my cell phone and google the number for the pump company-Medtronic. Fix this, I say to myself.

The Medtronic man on the other end of the line says the pump is broken and that we are going to need another one. I die a little inside. My world starts to spin. I feel like Dorothy in the middle of the tornado.

 

What now? Go home. We just got up here twenty minutes ago. Go home. But, wait. Why do I need to go home? There are cell phones, Google, the Internet based pump company, his doctor on call and I think I brought syringes. Ok,  we stay.  And fix this. Just calm down and fix this. These are all the thoughts spinning around in my head.

So, I do. I call Medtronic they tell me they will deliver a new loaner pump to the resort by noon the next day. Done. How can they possily get this done I wonder. I look at my watch it's 6:30 pm. Truly amazing! I am still worried about the fact that we broke the pump (because of the water damage) and new pumps cost $7000. But I know we are eligible for an upgrade and hopefully my insurance company will pick up most, if not all of the cost like they did the last time. Besides, I can't worry about that right now. We will have  to work this out because it is Rocco's lifeline. Things will work out, Shari. Just keep going. 

Next I have to figure out how to manage his diabetes manually,since there is no insulin pump telling me what to do. Call the doctor. Speak slowly. More importantly listen carefully.  Block everything else out and just listen. This is a not an easy  task since we are  now packing everything up and heading back to our vacation house. But, I try to focus. The doctor tells me I will have to give Rocco insulin injections to cover  each meal, and every three hours until the new pump arrives. Have you ever given a six year old a shot? Since he no longer has to do them, he is terrified. He remembers his immunizations and he has a terrible fear of shots. So, of course, I don't tell him yet. I just can't add anymore fuel to the fire that is burning in my head. 

The doctor tells me to call the pump company to get his insulin settings and call him back for further instructions.

We head back to the house. 

I call the Medtronic pump man, (who couldn't have been more kind and helpful!) He tells me the settings, assures me the pump is on it's way. I call the doctor back. 

The doctor gives me diabetes 101 training over the phone and wishes me good luck overnight. All I can think about is his recent to 23 blood sugar reading . I am still raw from that.  Blood sugar levels rise and fall based on Rocco's mood, his stress level, his excitement level, the amount of exercise he gets, the type of exercise he does, the amount of food he eats and the type of food he eats. Working the numbers is only half the picture. You not only have to become his pancreas but also his brain. Dear God, please give me strength. 

Michael is trying to fix the pump. He is working on it with his brother, while I am trying to calculate the amount of insulin he will get overnight.  I see the two of them with a multi tool.

 

I hear Michael tell his brother that he doesn't want to break it (more) because then we really will have to pay for it. Ugh! In my head, I curse him for not listening to the doctor with me. I think to myself:  The a Medtronic man said the pump was broken and there is a new one coming, so come over here help me figure out these damn numbers, so I don't kill our kid overnight and leave the pump alone! I look over at them and roll my eyes as they put the pump in a bag of brown rice. ??? Whatever... 

I do the calculations, while my entire in-law family is now downstairs parenting my children, feeding them dinner and counting every carb. Thank God for them! 

I realize on my second trip downstairs,that I am still in my bathing suit. The back story is this : the entire week before, I was obsessed about how I would look in my bathing suit. I spray tanned, worked out, lost five pounds and slathered my chubby legs with an entire bottle of cellulite reducing lotion. All this so I wouldn't look like the jolly green giant in front of my size 0 sister in-laws. They are nice and would never care, but I did this so I wouldn't feel like the fattest one in the room.  As I bounded back upstairs, I realized I had  let it all hang out, for all to judge for the last couple of hours! It made me chuckle as I felt my thighs jiggle. What once seemed so important was put aside with a change in perspective. My thighs were the last thing on anybody's mind as Rocco's care took center stage. To be honest, it was a little freeing for the rest of the weekend. They had seen me at my worst in the first twenty minutes of our trip so nothing after that was "judge-worthy". It made me relax, let my guard down and really enjoy myself. 

Anyway, so now we have to give Rocco his shot for dinner. I take him upstairs away from everyone but he wants his friends (i.e. his brother Zeke and his cousin) to come and watch. He wanted to be brave in front of them. He is so cute. I listened to his request and I let them come up. Hey! It might just help. But as I start to give him his shot he turns, looks at it and panics. "I'm not ready" he whimpers. His whimpering breaks my heart because he takes all of this in stride everyday so I know whenever he does complain he is really scared. We wait for a couple of minutes and he says ok. But, as I give him his shot, the insulin starts to burn. He starts to cry and his shorts fall down. This inspires the two nervous onlookers to start giggling and makes Rocco cry even more! He is now yelling, "It burns! It burns!". I hold back tears as I grit my teeth and turn mama bear on the two onlookers (one of which is my other son).., I growl at them and tell them to "get out of here!". I felt terrible later but it just came out. A protective mother is nothing to mess with, I guess. Those poor little guys. 

We finish with the shot, the tears and retrieve the shorts. I hug Rocco and he says "Mom, why were those guys laughing at me?" I say,"sometime people laugh when they are nervous. Sometimes people laugh at odd times. It's just a reaction that sometimes happens ." To which he  replies, with a smirk "or was it because my pants fell down? I reply "Or because your pants fell down! " We both laugh and start to go downstairs. But before we leave the room, Michael grabs my hand and tells me to wait.  He takes the pump out of the stupid bag of brown rice and says "let's see if it worked".  Ok, McGyver. I say in my head. He carefully puts the pump back together and turns it on.  The Main Menu  screen pops up! 

What??? He says "Let's have it give some insulin and see if it does that too."  IT DID!! What?? Really? Yes! 

I kiss him. I kiss the pump and I kiss him again. Omg! Now all my tense energy starts to melt. We hooked Rocco back up and it worked the rest of the weekend! And still is! 

The next morning, the housekeeping department of the resort (apparently mail that is sent to the resort does not go to the main building, but rather to housekeeping!) called my  cell phone and left a message that they had received a very URGENT package addressed to our last name, but  since they couldn't find Rocco's name in the computer system they refused to accept delivery. So, she sent it back!!!  After a few choice words, from me  and my mother-in-law regarding this major flaw in their mail delivery system and her poor judgment,and after multiple calls to UPS, we tracked it down and had it re-delivered to the hotel. Phew! If it had been lost, we  would have been charged $3000 for the loaner pump. Omg... 

Finally, after a very tumultuous first five hours of our trip, I was able to relax and settle into a wonderful, well deserved and well appreciated vacation! 

23.

                                                                  

"Mom, I feel low"

"Ok, honey, hang on. Michael, can you please go get his monitor?" Michael trots fifty feet up the hill to my in-laws house, while my sister-in-law and I talk about whatever we were talking about. Rocco continues to stand next to a pond trying to capture a frog in his net.

"Mom, I can't really focus right now"

My smart sister-in law has the where with all to say, "Well, let's get you away from the water then," She grabs him and pulls him up over a little fence that protects kids from the pond and leads him close to me. "Thanks", I say, as I hold her baby, my super cute newest nephew. Michael returns with the blood sugar monitor. Checks him. Beeeeeppp. The machine sounds a low sugar warning. Then Michael hollers, "SHAR! He's at 23!!!"

At this point Michael grabs his hand and I cry "Carry him!" I hand the baby back to my sister-in-law and say to her, calmly, "Yeah, he’s conscious, but 23 is pretty much the lowest he’s ever been. His ideal number is 123" as I run behind Rocco and Michael to the house. I am not sure if I said this to her or to myself. Talking myself into grasping the severity of the situation as everything around becomes slow motion.

We give him grape juice, which is super-high in carbs. He asks for candy. My father-in-law gives him a piece of chocolate. He asks for a Healthy Choice fudgesicle and we give him one. Of course, his brother and his cousins are now all requesting fudgesicles.  Sure. I calmly sit next to Rocco touching his hair and looking him over. Oddly enough, I’m usually calm in a crisis. My usually swirly brain has an uncanny ability to focus into calm rational thoughts. These thoughts are then executed into even calmer directions. The time when I panic, is after. Way after.

We wait ten minutes as several of us sit with him and check him out. Then we check him again, and his blood sugar is now 44. Oh thank God, he's on his way back. He begs me for a hot dog, saying that he’s starving and can't wait until they are cooked on the grill. He wants to eat one immediately, frozen and starts to cry and yell at me, asking me why I am not getting up to get him one. Seeing him irrational and panicked starts to scare me. "Stay calm Shari. This will be over soon", I say in my head. We wait ten more minutes and his blood sugar is now 106. He is back. Now we have to stop with the sugary foods. When his blood sugar is rising this fast you have to be careful not to send him straight into the 300's or higher. We wait ten more minutes. He and I just sit together, not speaking, just sitting. The rest of the family mills around acting normal, but I can tell we are all somewhat freaked out. At one point I hear Zeke tell his four year old nephew, "He has diabetes and his blood sugar is 23."

The rest of the day he stays in the low 100’s. Thank God! I hold it all in until we get home and I finally close the door to their room after kissing them good night, I see Michael in the hallway and fall into his arms and start to sob. He is surprised by the tears but also understands. He says, "Shar, we are doing the best we can and sometimes there are going to be very scary lows. We just have to learn from them".

My reasonable head understands that this is just one blood sugar. But, my PollyAnna side just got slapped in the face with reality. 

The reason he got so low is sort of a long story but I will try to shorten it.

Rocco had spent the past week in 85-95 degree heat at diabetes camp, eating a lot of high-fat, processed food snacks. I will write another post about camp soon. On top of that, the kids spent a lot of time in the lake or squirting each other with water guns, so they all took off their insulin pumps at these times. The change in diet and activities can lead to high blood sugars. And with Rocco, they did. His blood sugars ran from 70 to 450 during the week. Many more 200’s and 300’s than we like to see. So we had been giving him extra insulin to compensate for these highs. We had changed the infusion sets for his pump four times that week, concerned that blockages might be causing the highs. We just could never seem to get his blood sugar down and stable.

So, when he was 275 before we left for my in-laws and 369 halfway through the hour-long drive over, we decided to change his infusion set during the drive. By the time we stopped to do this, he was at 419. Ugh! We gave him a dose of insulin including a little extra. Just trying to get the level down, wishing for some readings in the 100’s. Be careful what you wish for.  We did get the level down all right, all the way to 23 a couple hours later!!

So flash forward to me sobbing into my husband's chest. Total panic had finally set in, with thoughts such as:

•

• How can I trust what I know now, I was confident in caring for him, now how do I trust a gut that has betrayed me?
• How could I have looked at my little man and NOT known he was in trouble?
• With this failure, how can I trust everything I have taught myself about diabetes the past five years?
• How can I let him out of my sight going forward?
• How is he going to go to college on his own?
• How can I ever let him go to bounce-house birthday party and just drop him off?
• How am I going to accomplish the required vigilance over him without cheating his brother Zeke out of the attention he deserves?
• How can I watch him catching frogs and not wonder, are you at 23 right now?
• How will I ever forgive myself for getting him to a 23?
• How will I ever forget the number 23?

I have said it before, I usually am pretty PollyAnna about things in my life. I usually live in the "That can't happen to us" zone. But, I have to tell you, this did it for me. This made my knees buckle. This has opened my eyes. This 23 blood sugar, so close to 0 blood sugar, or a coma, has shaken me to the core.

No more acting like our situation is normal. As normal as everyone around me wants it to be. People don't like women to be over dramatic. So I usually don't act that way. But, I don't really care about the people that judge me that way.

Also, if you want to judge me for getting my child to a 23, then you can come here tomorrow morning, wake him up, check his blood sugar and then live it for just one day.

If you don't judge me, thank you. But, no worries, because I judge myself. So you are off the hook. My child could have passed out into a coma today, maybe without coming out of it. My child that I tried so hard and so long to create could have been gone. By me. Not a car driving down the street. Not a head injury after a fall. But by me. His mother that would kill herself before letting anything bad happen to either one of her bear cubs. By me. What a terrible shitty disease. There I said it. I probably won't say it again, because it really does no good and I don't like Rocco or me to be victims. But, for once and for all, I will just say it!  I hate this stupid, shitty f*%”ing disease! I hate this situation and I don’t think it should be allowed! I don't want to do this anymore. I can't do it anymore. No. I am done. He is done because I say so. Done.

I just want this to be over. I am tired. I am shaken. I am weary. I am done. I am exhausted. I can't imagine how he feels. My poor precious angel.

But, there's no way out...

Who's your best diabetes advocate?

I admire people who can get up in front of a crowd and stir up the troops. Create a rally to create change. My good friend Michelle is that type of person. She is a strong Italian woman who is willing to put herself out there every day, for the good of her Type 1 son Gino and other diabetic children. Rocco and I have been the beneficiaries of a couple of her rallies. She fights for the good of the children both in our school district and statewide. She has spoken at conferences and at meetings of school staff members responsible for the care of children with diabetes. She is the person to call if you are having trouble in your school,because she is not afraid. She is not afraid to go after school districts or legislatures. The world needs more people like Michelle. I, for one, want to thank her for her help and for the havoc she creates when children with diabetes are being treated incorrectly. I just hope she takes herself all the way to Capitol Hill one day, to get more diabetes awareness out there. She is the kind of strong force that every worthy cause needs. 

Thanks Michelle and the many other people out there who are willing to get their hands dirty. We applaud you!

 

If you know of someone in your community who you would like to thank for their work with diabetes, please feel free to mention them here in the comments section and then share the post on Facebook, Twitter or through your email! They need some love today!

all alone

This past weekend was my birthday. Michael took the boys fishing/camping at our friend's cabin in the forest “up north”. I was alone from Thursday at 5pm until Sunday at 3pm!!!

 

Happy birthday to me! I had dinner with my friends and family, I had a couple of girlfriends spend the night after we got fun drunk and I met some friends for breakfast and a lunch!  It was amazing!

 

I kept having people ask me, "Aren't you so excited to be alone?" I was. It was nice not to pick up a toy or to make a snack a half hour after we finished lunch. I didn't have to hear " hey mom! Look!" for three and a half whole days. It was nice to write when I wanted to and just be free.

 

However, something was off. I knew I just didn't feel right. Something was missing. At first I attributed it to the lack of my kids’ noise. Everything was so quiet. But, nope, that wasn't it.

 

Then I realized what it was on Friday. My girlfriend asked me, "Why do you keep checking your phone?" while we were at lunch. I replied that I was waiting for the text with Rocco's lunch blood sugar number(from his teacher). As soon as I said this, I smiled...

 

Ahhh, that's it! I was missing the numbers. There were no numbers coming. No text was on its way. Rocco was with Michael at a cabin in the woods. I was missing the numbers. The constant, every day, blood sugar numbers that I have grown accustomed to. The numbers that dictate our next meal (or not). The numbers that constantly tell me if I am a good mom (or not). The numbers that make us eat sugar or zero-carb foods. The numbers that have enslaved me.

 

Not today. Not for the next two days. No numbers. It was an eery feeling. Like after a pet dies and there is a stillness in your house. Or when the power goes out and you keep turning on the light switch. I continued to make the mistake of checking my phone throughout the day. At night, I thought about finding Rocco’s blood sugar monitor to go upstairs and check him. But then I remembered that there was no one to check. All of my routines and habits, on hold.

 

For the first time in a long time, I did not have diabetes by default. Once it was missing, I realized how much it rules my every thought. My every thought... It consumes our family as we focus on those numbers every day. I imagine the scene in Good Will Hunting where Matt Damon is up at the blackboard feverishly writing down numbers. Every day, I am Matt Damon at the blackboard, with all those numbers swimming in my head.

 

Ok, that last one is just plain old eye candy for my lady readers!

Those numbers belonged to Michael for a couple days. He is the only person on the planet that I trust enough to let myself off the hook. He knows how to care for Rocco in any scenario. If they were stuck in the woods, he would still know how to care for him. If they had something terrible happen, he would know exactly what to do. For this reason, I was able to let myself relax. For the first time in a long time.

The boys have spent the night at their grandparents, and both sets of grandparents do an amazing job. But I am still "on". Maybe through a text at midnight or an early morning call regarding breakfast. Either way, I am still married to the blood sugar numbers.

 

So, I was excited to not be needed as "mom" this weekend. But I was especially excited to not be needed as "diabetes mom".

 

Thanks Michael for wearing the ball and chain for a couple of days. It was a nice break!  But now I’m refreshed and ready to get back at it! 

the big pink ridiculous bike!

The big pink bike!

 

My favorite color is pink. Soft, pale pink. Always has been. Light blue is my second favorite, but pale pink is the first. But let's face it; this chickadee does not see a lot of that pale pink color. I am knee-deep in Legos, frogs, rocks and mud. Having some pink in my life would be a real treat!

 

I need a bike. The boys are becoming better on their bikes, and I am at the point where they ride too fast as I walk behind them. Ahhhh, I remember the days when a bike ride with the boys could end up in tears, blood and me carrying two twelve-inch bikes, with the training wheels banging into my shins, while Rocco and Zeke howled and limped home. Those were the days!

 

Not anymore! Let me tell ya! These two are picking up steam, and fast! So, it is high time I got a bike. I have a mountain bike from college that has been living in my basement with the wheels off for twenty years. Really? Sadly, yes. That bike is from a long-ago life, so I don't really feel a strong attachment to it anymore.

 

So, imagine my squeal of delight when I spied this pink beauty! 

Isn't she pretty? Yep! I wanted her! I just wanted to hop on her at Target and ride her through the store, straight to the checkout. But my practical, boring side won out. I thought, “I have a perfectly good (maybe) bike at home.”  "I am forty." "My neighbors are going to think I have lost it!" And finally, the unfortunate, ever-present thought - "i shouldn't spend money on something like that right now".

 

The boys were with me, saying "Mommy, you should get that! You love pink!  Just buy it! Dad works hard" (My favorite!)

 

But I walked away. Saddened, I came home and asked my husband to fix up the one in the basement for my birthday present.

 

As the days passed, I thought about my pink beauty, but I wasn't sure I could confidently pull it off - such a dazzling, daring bike! It was PeeWee Herman nerd like. It had a basket in a salmon color that clashed with the light pink, and it had whitewall tires, for God's sake! And it was really pink!  But I still loved it. Secretly, I went back to visit it twice by myself at Target in the weeks that followed. I can't believe I just admitted that!

 

So, imagine my surprise and delight when I came home yesterday and there it was! With a big, pink bow on it! The boys had told my hubby and he went to get it! Even my close friend texted him and said "she really wants that bike, go get it". He said he felt so silly walking it up the counter. He said he wanted to scream out, "It’s for my wife!" The three of them were so excited to present me with their secret birthday present! It was a great moment for the family! I, of course, squealed with delight (again!).

 

So, if you see me around town riding the big pink bike, give a honk! Because at forty-one, I am going to ride my ridiculously fabulous pink bike with joy and confidence, because life can be boring with its trials and responsibilities! It's time to have some fun!

 

It's true what they say.  Hopping on for the first time in years was just like "riding a bike"!

New Summer's Resolutions!

Today, marks the beginning of summer vacation in our household! I have to tell you I am thrilled! I really thought I would be a lot more nervous about having two rambunctious boys home with me all day long. Especially two rambunctious boys that are now used to doing something all day long. But, I believe at this moment, I can handle it. 

I decided to make a list off all the things I wanted to accomplish this summer. I realized it was a little like a New Year's Resolution type list. So, I named my list New Summer Resolutions! Here goes:

I will: 

I will make them get dressed everyday.

I will do their hair and teeth at least once a day.

I will take them somewhere every day even if it is to go get McDonald's.

I will let them have a moment of peace everyday and not constantly bark orders all day. 

I will do one page from the Summer Bridge books everyday.

I will play games with them whereby I don't let them win every time. They are 6 now.

I will deal with the losers cries and not give in. 

I will let the Diabetes mom hat go once in a while and let the kid be a kid, even if it kills me!

I will teach Zeke to swim with his darn head underwater.

I will be patient during this process (even if it kills me).

I will make them wear their helmets when riding their bikes around the block.

I will get off my lazy A and go with them on said bike rides.

I will bring his monitor and glucose tabs everywhere we go. Lesson learned!

I will say yes a lot and not always no. Even if the request is ridulous. 

I will try to be fun. I mean, I will be fun. 

I will not:

I will not sleep in until 9 every morning while they watch TV. 

I will not, however, feel bad if I turn them off by turning the TV on in the afternoon for an hour and a half.

I will not drive them into the ground on our vacations by planning too much.

I will not try to make my husband go to every festival in our area.

I will try not to become glazed over with his diabetes care and I will count Rocco's carbs as religiously as I do when he is in school.

I will not their bickering get under my skin.

I will not kill them. No really, after three in-vitros and five years of infertility, they cost too much to make! 

I will not let the pretty flowers I planted in the front yard go and get scraggly by July.

I will not constantly yell "be careful!". Careful is overrated! 

I will not forget to bring my iPad to let them play games when we go to the ER for not being careful. 

I will not forget to take tons of pictures of the funny times for my blog. Pictures are fun! 

I will not do housework all day long. The summer is too short. 

I will not mess up all the cupboards and closets I worked all school year to organize.

I will try to stay present while they are repeating themselves, showing me something or telling me a story for the 1,000 time. 

I will not forget that they will only want to do those things for the next couple of years then they will only want to show and tell their friends.

I will not worry so much about what the kids will become and just let them become.

I will not worry so much how bad I look in a swimsuit. 

I will not worry so much.

Ok, I think I have enough. I know that last one is going to keep me pretty busy. What are your "New Summer Resolutions"?