Tuesday, September 25, 2012

Routine

So I noticed on Sunday that Alex's numbers were higher than they've been and staying up in the 200s. I immediately started the question game.

  • Is she getting sick? Her nose is running. She is coughing a little. I checked, but she didn't have a fever. But perhaps there is something going on there.
  • Did she eat something uncovered? We did eat out and that's always a guessing game.
I don't like the 200s but I've seen worse so we just tried to push the water and correct when we could. I got up twice overnight and corrected.

Monday morning Alex woke up with a nice 123. I figured we beat this thing. She had her normal eggs and bacon and a very small portion of cheerios because it was PE day and she has PE first thing in the morning. Last week after PE she dropped to 49 and had a rough day all around. So, this week we decided to beef up her carbs at breakfast to help. I subtracted 12 grams of carbs from her bolus and sent her onto school.

At 8:45 I received a phone call from the nurse. "Mrs. King, we have Alex here and she is 352. She wants a snack. What would you like to do?". I asked the nurse to put Alex on the phone. After talking with her about not needing a snack right now I suggested she hold off on her snack which she usually doesn't have until 10:30 anyway. She complained that the class was snacking now after PE. I suggested she have one of her cheesesticks and she told me she ate them on the bus. Now, mind you, I have never known that she ate any snacks on the bus AND she isn't supposed to (school rules not diabetes rules). I then told her there was NO earthly reason she needed a snack and it had NOTHING to do with her blood sugar. She had a massive breakfast followed by 2 cheesesticks. I told her to go back to class and come back in an hour to retest.

At 9:45 I received yet another phone call. "Mom, this is Alex. My blood sugar is 332. It won't let me correct".  At this point I was frustrated. She finished her breakfast at 6:45. She had PE which tends to drop her like a rock. She had been corrected. She started the day at 123! I told her I'd come up to the school and I could take a look at her pump site.

I grabbed a small insulated bag and filled it with insulin, an infusion set, cartridge and alcohol preps. I also grabbed the baby oil to help pull off the old pump site.

I don't know why but she had retested yet again and when I got there was in the 360s. I pulled out her blood ketone meter first. 0.1 so no ketones to speak of which was good. I then disconnected her pump and tried to prime it. The insulin flowed freely from the tubing. I had the nurse check her temperature and she was 97.6. No fever. So I decided it was time to pull the site and get that out of the equation. It was pump site change day anyway - we usually do it at dinner time. Alex was a little miffed about missing recess and getting a site change in the busy health room. The health room was full of about 10 kids - 3 laying on beds, 4 sitting in chairs, and another 3 milling around doing who knows what. Lots of band aids, ice packs, and kids with sore throats. I sat Alex down in a chair and washed my hands. Then we prepped her arm and I readied the cartridge and infusion set. I saw 2 kids in beds watching us curiously. I always wonder what they think....I'm glad I'm not THAT kid...

As I put in the new site, I thought to myself how I was oddly calm about the whole thing. That isn't my usual demeanor in my past non-diabetes life. It just goes to show you how routine this has all become. I remember when Alex first went back to school and I was embarrassed to give her shots in the health room because I felt like I was being watched by the nurse and worried I looked like I was doing something wrong. I hated giving her shots, blood tests, etc. anywhere but in private. (It didn't help that at a JDRF conference last spring, the nurse in the playroom actually criticized me because she THOUGHT I didn't replace the nano needle on the insulin pen which I did by the way). Now I just don't care really. It just happens. It's part of life. I may not be a pro, but I manage, right?

Once we had the new site in, I pulled the old site. Immediately I noticed it looked funny. When we pulled it, liquid oozed out tinged with blood. That isn't what normally happens. Usually nothing comes out except maybe a small speck of blood that doesn't even require a cotton swab. But this site was red, a little bruised looking and liquid oozed out for a bit. I don't know much about bad sites but I am guessing this was one. We've never had a bad site before so this is new territory if in fact this qualifies.

I put some antibiotic on the site and covered it up and walked Alex back to class. The rest of the day her numbers were between 91-130.

I got in my car in amazement of how calm and smooth the process was for Alex and for myself. She sat quietly and calmly as I fixed the new site while the kids on the beds stared at us wide-eyed with a bit of curiosity and fear. She mumbled about missing recess but never threw a fit. She did as she was told as far as going to the nurse for tests to correct and make sure things were moving along with actions for high blood sugars. I guess it really has become routine.

Wednesday, September 19, 2012

My Son's Christmas Wish List

Sadly, neither one of my kids believe in Santa anymore. I suspected Ben hasn't believed for a while. Alex also didn't appear to believing much either and was hounding me almost daily with questions last year beginning in September. After much thought and discussion, I had a family talk with them individually in early November about Santa and the magic of Christmas. Ben just grinned and seemed uncomfortable. He's known for a while apparently. Alex knew but I think hearing it out loud made her a bit sad. I told them they were welcome to pretend to believe if they wanted to. And that the magic of the season lies in helping keep the spirit of Santa alive for everyone around us.

As it turned out, last Christmas wasn't all that magical for any of us. It officially ranks as Worst.Christmas.Ever. I hope we never top it either!

Now I know...why am I talking about Christmas in September? Well...I'm a planner. And I'm on a tight budget. Santa has has a tough year financially. So I asked my son to write up a wish list. I can think of a hundred items for Alex because she loves everything and anything. My son is a different story. He is 12. He is past most of the "toy stage" which makes me so sad :-( I refuse to buy him one pile of video games and call it done though. And heck, I don't even know what video games he likes. That whole boy/war game/battle/etc. all seems foreign to me. The names of the games don't stick long. I've tried playing them or watching him but it just isn't my thing. On the other hand I can name as many American Girl dolls as Alex. So anyway I need help with his wish list. So I asked him to write one. Here was his list.

I guess I wasn't the only one who ranks last year as Worst.Christmas.Ever.

Thursday, September 13, 2012

Surgery Take Two

I didn't really want to go into detail but Alex had surgery about 2 weeks ago. It was minor outpatient surgery. Getting the approval from the insurance company however was a major not so fun ordeal. But after 3 months, we finally got it and into surgery she went. Without going into too much detail, Alex had a medical implant placed in her upper left arm to stop/delay puberty. She's been followed for precocious puberty for several years now. Things were starting to happen and blood sugars were getting wild and we just decided that she wasn't ready for what was happening. I'm not sure I'll ever be ready but I know she isn't ready yet. And given how short everyone is on both sides of the family, this gives her an opportunity to gain a couple inches too in height. I'm all for that especially given my 5 foot stature that means eating a little doughnut causes me to go up a pant size practically.

Anyway, the implant itself was a smooth process. The surgery was a little bumpy but thankfully not because of diabetes.



Her BGs were at or near target from bedtime all the way through the post-op. She had a surprise reaction to Demerol through the IV and ended up in hives and was given Benadryl. And 2 days after surgery, I ended up in the pediatrician's office with a fever spiking, coughing, high blood sugar child. She had pneumonia. But thankfully, after some Albuterol treatments and antibiotics, she was on the mend within days.

So now today we had a visit with the ENT because she has had countless ear infections since last December. She has had ear tubes in place since she was 6. And I knew what he was going to say before he said it...the tubes need to come out. So we'll be headed back to surgery in the next few weeks. I'm hoping diabetes plays nice again. I'm hoping she doesn't get pneumonia this time.

I'm a little anxious about the ear tubes. She has had ear tubes since she was 7 months old. We had about a 1 year break without ear tubes and in that year she developed "granulation pockets" otherwise known as benign cysts or the beginnings of cholesteatoma. That was rather crazy stressful. Still, we came out rather lucky in that experience because those "pockets" which is my favorite word for them didn't harden into the full blown tumor that has to be surgically removed. We managed to spend a lot of time at an allergist where Alex received weekly injections for 2 years and getting her tonsils and adenoids removed and new t-tubes for her ears in kindergarten with the thought being that the reverse pressure in her ears was caused by her bad allergies and that curing the allergies and fixing the pressure would reverse those yucky pockets. That worked. And she has had those t-tubes ever since.

Now we are taking those tubes out and we're going to give her ears some time to heal because there is a lot of scar tissue back there from those 4 sets of tubes she has had and the exploratory surgery she had when they discovered the "pockets". I hope those allergy shots paid off. I hope we don't get any new pockets to deal with. And I hope no more tubes are needed.

Wednesday, September 12, 2012

Buddies

Today is one of those days I just despise diabetes with everything in me. It's the days where it clearly interferes with my daughter being like every other child.

I feel blessed that Alex is at an elementary school that happens to have a kind, compassionate, educated nurse on staff daily who has experience with type 1 diabetes. She knew more than I did as far as what Alex would need coming back to school after diagnosis. I also feel blessed that her school has 3 other type 1 diabetics, one being a girl diagnosed 1 month after Alex. Alex is the youngest of the bunch but I feel like she has 3 mentors along the way who really get what life is like when you are high or low.

We implemented an Individualized Health Plan (IHP) shortly after Alex returned to school last year that was attached to her existing IEP (for speech). In this IHP, it stipulated that Alex required a buddy with her at all times when leaving the classroom - restroom breaks, testing for snacks and lunch, testing for highs or lows, and end of day testing before boarding the bus home. It makes sense that someone must be with her - she doesn't always feel her lows. And, if she is really low (which has happened), she needs someone with her in case she passes out - someone who can go get help. What if she didn't have a buddy and she passed out using the restroom? Who knows how long it would be before she was found? So I'm for the buddy system in some form.

Alas, this buddy system has been a pain in the ass. Excuse my language but that is exactly how I feel about it. Last year, I wrote of my woes with the buddy system because it caused problems from the start. Parents don't like their kids missing class. Parents don't like their kids visiting the health room multiple times a day - and I totally get that! There are way too many germs to be had there! The bottom line is someone needs to accompany Alex. I suggested last year and again this year in meeting with the teacher before school started that I urged them to rotate buddies! Have a child take turns daily. Rotate through the entire class. Having one child be the buddy will not work. Having 2-3 children doesn't work. Rotate. If there are 30 kids in your classroom, then a child only is missing class once per month.

The problem is complex. Alex wants to have her friends be her buddies. Alex is also in 4th grade where the whole tween/teen angst begins. Hormones are kicking in. Cliques are forming. One day girls want to be friends. Then next day, they are enemies. Then the next day they have made up. Alex has low self esteem. Diabetes has not helped at all. Beginning puberty has not helped at all. Being anxious has never helped. The bottom line is Alex doesn't seem to be fitting in at school. She has few friends. She will come home and tell me she is friends with someone. 2 days later that friend has told her they've decided to unfriend her. She will be in tears. 2 days later they want to be friends again. No one calls her. No one invites her to play. She was invited to one sleepover which I wrote about earlier. Diabetes managed well at the sleepover. Alex and friends did not. She called me crying and texted me crying to pick her up multiple times because no one wanted to play with her. She slept in a corner most of the night. I don't blame other kids. I don't blame Alex. I blame the age. I blame her anxiety. I blame myself. I blame diabetes. I try to figure out ways to encourage her to make friends and to learn how to compromise (which tends to be part of the problem on Alex's part). And we are stuck in the same spot.

Back to buddies...Alex has "rotated" between basically 3 girls in class since school started. And they rotate based on who is being friendly to who that day. I get the impression though I may be wrong that Alex bills it as a privilege to be her buddy and leave class early especially at the end of the day when they hang out in the nurse's office for 10 minutes and play around before bus pickup.

So far, Alex has come home without homework almost every week or missing other items because the teacher packs everyone up at the end of the day and Alex is usually gone. Then I am left rushing to try to get packets done with less time at home than everyone else which a ticked off kid who hates homework as it is. Alex comes home without newsletter and notes from the teacher. I've emailed with the teacher about it multiple times who seems to be trying to work something out with her routine. But nonetheless, it's aggravating and I can also tell the teacher is aggravated and truly wants to try to resolve this. Diabetes is completely new to her and she HAS been VERY compassionate when we've met and emailed. But here are some frustrating examples of this whole buddy system debacle...

The other day she wouldn't let Alex and her buddy leave early for the nurse because of a science review. She yelled at the class (according to Alex) for not listening to the review and told Alex and the buddy they weren't going anywhere until they finished the review. The bell rang and Alex had to rush to the nurse to not miss her bus. Not cool.

Alex has been getting these notices for a few weeks now about a messy desk. She has lost recess 2 times. She has come home in tears crying and telling me her desk is clean and she is being blamed for a neighbor's desk who throws his trash on the floor and then kicks it under Alex's desk after she leaves for the nurse. After the second time she has stood on the wall, I emailed the teacher. I asked her to be more specific about the mess so I could work with Alex on what was messy and that she should observe the trash issue if it is in fact an issue. Alex has never had a reprimand from a teacher. Ever. Never been blamed for a messy desk. Ever. I'm giving Alex the benefit of the doubt here. The teacher again was super nice and said she would watch it and also noted that Alex started getting the notices after the class moved desks and Alex was moved next to this particular kid. I know mistakes happen. But man...Alex has been through ENOUGH. Don't blame her for stuff unless you know she has done wrong! Good grief! Give the kid a break! She already has problems with friends and then in recess she stands against a wall for someone else's mess?

Okay so this morning Alex tells me the teacher has announced that Alex's buddy will no longer be hanging out with her in the health room. The buddy will walk her to the door and leave. Now I am TOTALLY okay with this. It should have been done from the beginning. Alex is distraught. It's the one "ploy" she has in her mind to keep a friend her buddy. In her mind no one will want to be her buddy now. And no one in her mind therefore wants to be her friend.

I asked her why they won't let her test in class anyway. Problem solved except for lows and lunches. They won't do it because it's a "bio hazard" and some kids in the class are scared of needles and blood. Awwww. Poor things...

I am so aggravated. To make matters more frustrating, last week Alex came home and told me she was very low and shaky after recess and told the teacher who agreed she looked unwell and pale. Then she sent Alex and a buddy to the health room. Alex was 60. She said she felt the room spinning all the way to the health room. She did NOT tell the teacher though she felt faint (in the teacher's defense I guess). But why send a child with Alex if she is obviously acting low? I'm okay with buddies when no low is obvious. But a bad low...one that feels like a passing out low...how fair is that to another child to deal with? I told Alex she HAD to say she felt like she was going to pass out next time that happens. Make it clear. An adult should walk her when then happens and I've specified that before.

I don't know what the answers are. I am just sick of this. Sick of diabetes. Sick of buddies. Sick of tween drama. Sick of everything.

Tuesday, September 11, 2012

Remembering 9-11

It's been 11 years, and I still remember that day. And, given my crappy memory, that says a lot right there. I am writing this post for my kids...because I want them to know what that day was like...because they ask me sometimes and you know when you get caught up in packing school lunches, helping with homework, laundry, groceries, diabetes, you don't always take the time to really explain.

Ben had just turned one years old. We had recently flown to North Carolina to visit my parents and celebrate his 1st birthday.


Ben has been such an easy kid. I can't say the same about his babyhood...he was rough! He was colicky and would get mad and bang his head against the floor. He wasn't speaking yet and there were hints from our pediatrician that he was speech delayed and possibly at risk for autism. It was a frustrating time at home.

We were at home trying to get into a routine. I was still working at the time - teaching college level classes at a local technical school. I spent some days on campus teaching in person. And some days, I spent working at home teaching online, piloting one of the first distance education degree programs offered in the country. Ben spent about 6 hours a day at a home daycare about 10 houses away. I was so grateful to have found a nice babysitter who lived nearby. When I worked from home, it was nice to know he was a few houses away if I just wanted to pick him up early.

Anyway, Ben being the fussy baby that he was, would wake up and I would plant him in front of the television in my room to watch his favorite show, Teletubbies. It was the dumbest show I'd ever seen but that kid loved it. He would sit mesmerized the entire time. So I would take that time to shower and dress before we would head downstairs for breakfast. I never watched the news or listened to radio in the morning. We would turn on PBS kids and that was it.

So, Joe and I were getting ready for work, and the phone rang, which in and of itself was odd to be getting a phone call early in the morning. Joe's brother called and asked us if we had the news on. He proceeded to tell us a plane had hit the World Trade Center and we should turn it on. I was confused and a bit taken aback and we turned the television much to Ben's dismay. Sure enough, they showed the towers and one of them had smoke billowing out. At that point, it appeared to be an accident or that is what they were reporting. We had it on and were still trying to get ready and then...the second plane came in. I think we all stopped at that point. And, we sat down. Like so many others, we were transfixed by the events as they unfolded...and horrified.

As crazy as it seems, I still walked Ben over to his daycare provider's home because I don't think I fully grasped what was going on. It seemed so unreal. I continued to watch and then I received a phone call that we should stay home from work. I just sat and watched the news and tried to make sense of it. And then, I started to panic because when they said that the plane that hit the Pentagon came from Dulles, I remembered my mom was traveling to Washington DC for work (NCIS) and mentioned flying in and out of Dulles. I didn't know the dates though. I knew it was about that time. I tried to call her and there was no answer. I tried her cell phone, her work phone and the home phone. No answer. I went to the daycare provider's home and picked my son up. I just wanted to hold him and be home with him while I waited and hoped to hear back from my mom.

Eventually I heard from my stepdad that she was okay - she was in North Carolina on base and the base was on lockdown. But she was okay. I thought about my many relatives that lived in Maryland with several working for the government and I worried and held my son tight. I thought about the people I didn't know who were in the towers when they fell. And I wondered what kind of world we had brought a child into.

Perhaps the things I remember most about that day and the days that followed was the silence. The air was still without planes. In Phoenix, you can see so far out that most days you can see a plane in the air at any given time. It was so still and odd and quiet. No one was in the air. Barely anyone was in their cars driving to work or all those ordinary places. It was quiet and still.

The occasional break of the silence came when the jets from Luke Air Force Base rolled by in formation patrolling the skies. I remember many a time of looking up at them and being grateful for their noise and their watch. I still feel that way whenever they are out and about 11 years later. Just like I felt that way every time we vacationed on Top Sail Island in North Carolina and watched the jets go by or saw a naval ship out at sea in the ocean while we played in the waves, a few short miles from Camp Lejeune. Seeing and hearing those jets makes me thankful that there are brave people in this country that are willing to fight for freedom so I can sit on a beach with my children and enjoy that freedom.

video

Thank you to them and to all those emergency personnel who risk their lives every day to save ours.


Tuesday, September 4, 2012

What is normal anyway?

I was going through some old photos earlier and it boggles my mind to see how big my kids have gotten. Where did the time go? It's like I don't even remember the time between them being little kids and where they are now. And I hate how hard it is for me to look at pictures of Alex before diabetes. I look at her cute little smiling face on a fishing boat about 4 summers ago and I think to myself...this was life before diabetes.

It's unnatural how "normal" diabetes has become.
  • When we went for Alex's surgery last week, they needed to take blood. I looked around at the other kids screaming and crying during pre-op procedures. And then there was Alex...she pricked her own finger, held up the blood, and asked the nurse if that was enough blood or did she need more.
  • We went to a salad buffet restaurant yesterday for Alex's birthday, and had to wing it with most of the portions for carbs. I leaned over to Alex and said "eh, maybe 20 grams?" A family member pointed out how times have changed from when she was first diagnosed and I was pre-measuring every morsel and pinpointing the exact brand of food to determine carbohydrates. I still don't like guessing, but I'll do it and I won't stress to hard about it.
  • I set my alarm for 2 AM every night and I don't sleep through it anymore. Most nights I'm up before it goes off. Alex will sleepily ask for her number and tell me she'll see me in the morning when we test.
  • It's not odd anymore to see needles or blood. I often forget that it IS odd for other people to see those things when we are out and about.
Nonetheless, it's hard to think about life without diabetes now. But...maybe not as hard as it was to imagine life WITH diabetes last December.