Friday, January 31, 2020

Our First Class Party

We didn't get much time to get accustomed to diabetes management before we had to face one of a T1D mom's worst days - classroom party day.  My son went back to school for five days before winter break.  Just in time for all the hot chocolate, sugar cookie making, handing out candy canes, and xmas class parties.  I seriously thought about keeping him home from school that last day before break because I had NO IDEA WHAT I WAS DOING with the diabetes management and his class was having a party where parents were providing: hot chocolate, cookies, brownies, cupcakes, candy, sugar cookies with a decorating station and a movie.

I met with the teacher and the nurse about a week before the party because we were establishing his health plan for school.  What to do for parties was part of the plan we developed.  The school nurse told me that there are usually three ways kids with T1D handled class parties:

  1. they were opted out (parent would keep them home or they would go to a buddy class that wasn't having a party)
  2. parents send in alternate "treats" that are diabetes friendly
  3. child participates in the party and covers the carbs with an extra insulin injection  (calculates carbs and covers before the party or calculates and covers after eating the treats)
Since we'd been home from the hospital for only two days when I met with the school; I had no clue what to choose.  I wasn't going to opt him out because that seemed like it was only in my best interest.  I didn't believe I would be any good at baking alternate treats that would be friendly but figured I could try some recipes while he was at school and if they worked out then great.  So we decided he would just be a part of the party.  We'd been told that dosing fifteen minutes before eating was the best for N's management but it was going to be a challenge since it was parents providing the treats and we wouldn't know what was available until just before the party.  I talked it over with N and he understood that he should make a few choices at the party of things he REALLY REALLY WANTED instead of having some of everything.  The day of the party came and the nurse and I had come up with a list of carb counts for common treats.  N was going to choose his items then go get his insulin for those then return to the party and have the treats.  We were ready!

That's not how it went though.  At the party, parent volunteers were in charge of the treats.  They walked around to each student and offered them a cupcake/cookie/brownie/candy and then they put it on their plate.  N had to wait for six different parents to come around 1 at a time before he got the three items he wanted.  Then he went to the nurse.  There was a sick child in the nurses office so he waited.  Then he went in and one of the things he had picked was a brownie with frosting but it was definitely bigger than 1inch square which is how the carbs are factored so they decided together what they estimated the brownie would be.  The cookie had sprinkles and stuff, so again, an estimate.  He got his insulin and waited ten minutes then went back to the party.  Once he was back at he party he ate a cookie and then a parent volunteer told him it was time to put any snack he hadn't eaten into a plastic bag and put it in his backpack to take home; so he put his other two items away.  So he had insulin for three treats of carbs but only ate one.  He wasn't ready/able to advocate for his diabetes and couldn't try to explain to an unfamiliar adult that there could be serious consequences for him not eating these treats.  About half an hour later he felt sick and went to the nurse with low blood sugar (no surprise - he hadn't eaten 2/3 of the carbs he dosed for).  The nurse didn't know he hadn't been given time/opportunity to eat the treats so she was concerned that his blood sugar was so low.  She gave him a 15g juice and glucose tabs to bring him back up.  He then had to stay in the nurses office until she could check him again after fifteen minutes.  She wondered if he'd be able to ride the bus because she couldn't figure why he was low after eating so many carbs.

My poor kid.  He didn't enjoy the party much.  He didn't really get to eat the treats.  He had a scary low blood sugar that made him shaky and sick.  He had to sit in the nurses office for 30 minutes drinking juice and eating sugar tabs and rechecking his sugars every fifteen minutes worrying that he would be too low to ride the bus home.  When he got off the bus I asked how his day went and how the party was and he said it wasn't very good then he told me the whole story.  I felt terrible.  It hadn't worked out well for him at all and he hadn't had fun only extra worry and stress and nerves.  

We made a plan that next time he could eat what he wanted at the party then go to the nurse and tell her what he had to get insulin.  His blood sugar will spike with this plan and the insulin will come in later than we'd like to cover those carbs but the stress and fear will be removed from what should be an average childhood experience.  Valentine's Day is right around the corner so we'll get to try the whole stressful situation again in just a few weeks.  

Thursday, January 30, 2020

So Many Alarms!

Before my son was diagnosed with type 1 diabetes I had one alarm on my phone to wake me every weekday morning.  Things are different now.  I have an alarm set on my phone for every three hours through the day and another for 3 a.m.  That early morning one is the one that is kicking my tail!  I'm TIRED.  In addition to the every three hours we also set alarms for fifteen or twenty minutes after an insulin injection to let us know when we can actually give the food.  This is usually set on the microwave so I can watch the time ticking away as I try to get the food prepared in the time I have.  It is amazing how many meals you can pretty much prepare in fifteen minutes.  Well, not prepare, but cook.  I usually do all the prep, cutting, seasoning, pouring into pots, getting ready.  Then we do the check, give the insulin, and turn on all the burners we need to frantically heat up all the things.  I know some T1D families that give their insulin and then give themselves 40-60 minutes before food is served but we're not there yet.

We've been on this routine since our stay in Children's Hospital and we haven't varied from it by more than about 20 minutes one way or another.  We left the hospital with the instructions to test blood sugar before each of his 3 main meals, and if he wanted an afternoon snack, and at bedtime, and between 1 and 3 in the morning depending on when we were giving the long-acting insulin.  N was super hungry for the first few weeks after his diagnosis so there was no sense trying to make it much further than 3 hours anyway.  Over our winter break from school he had his glucose checked at 8 a.m., 11 a.m, 2 p.m., 5 p.m., 8 p.m. and 3 a.m. and he pretty much ate something: 
YES, even at 3 in the morning!  For the first couple of weeks the team was adjusting doses and trying to decide what would work best for him.  For the first couple of weeks we didn't really know what we were doing and would respond to some of his numbers in ways that I wouldn't now.  What do I mean?  His target for nighttime is 150 but in the middle of the night he would dip down to 85 and I would give him juice.  It makes me giggle now because I was worried about how far he was from the target number but I wasn't really paying attention to the target range.  Nowadays if I get an 85 in the middle of the night I may offer him two crackers if I woke him up or I may let him sleep depending on how his numbers went throughout the day and what he had for a bedtime snack.  I typically only treat under 70 at night.  

In the beginning we were also correcting highs all day long.  Each time we'd check his blood sugar he'd be over 200 at first.  When he starting getting levels down in the low hundreds he even felt weird because he wasn't used to being in that range.  Nowadays we are usually between 90 and 140 at each check and we are considering ourselves lucky to be on a managed streak.  I know from our T1D friends that these streaks can disappear with no warning and without making any changes so we know things won't always be this easy.  We're thankful for the respite we are getting right now though.  I'm still checking every three hours and we always cover our carbs but we don't often have to make corrections and we aren't falling below 70 very often (once or twice a week at school usually).

Things are falling into a pattern in our daily routines and we are getting things figured out.  But yes, my alarm goes off ALL THE TIME.  Most of the time we don't really need the alarms.  We are almost always sitting down to dinner when that alarm goes off.  I have them set though so that I don't have to worry that I might not notice the time or that I might miss an injection.  I worry enough without checking the clock every few minutes.  It has taken some time for me to trust those alarms and trust myself but the past few nights I have fallen asleep easily and woken to the 3 a.m. alarm only to fall back asleep right after the glucose check.  That's a lot better than the first month when I was looking at the clock every thirty minutes all night long worried I wouldn't hear the alarm and then not being able to fall back to sleep after the 3 a.m. check because my brain would be too full.

I'm still a bit more worn down/tired than when I wasn't waking in the middle of the night but at least it is a brief waking and there is little stress involved in it for now.  I'll count my blessings.

Tuesday, January 28, 2020

First Month - UGH! THE NUMBERS!

We're past our first month now.  N was diagnosed in the wee hours of the morning on December 9th.  In some ways nothing has really changed and yet so much has changed.  We came home with our Pink Panther book and our new information and tried to create a new normalcy in our lives but some old information does get in the way.

When we were at Children's Hospital with our new diagnosis trying to soak in all the information we would need to take the best care of N, we were filled with the lessons we were learning and our thirty-forty years of life and stories and backstories of what we had known of diabetes.  I have a colleague that has type one diabetes but we never really talked about it.  In my twenties I was married to a man with type one diabetes and I remember he had rules he was following and little vials of insulin lived in our butter drawer in the fridge but I was young and he was guarded so I never learned much about it.

We were assured that our son can do anything he did before and he can eat anything he wants.  They tell you that, and maybe they really truly mean it, but it is difficult when there is a number attached to those food choices.  Higher carbs equals a higher number to dial on that insulin pen and as a parent I can't help but feeling sometimes that the number reflects my modeling of less than stellar meal planning and diet.  Before diabetes we were a family that liked fast food and take out.  We ate hamburgers and french fries.  When I felt like the family could use some bonding time I often used food to bring us together by baking cookies or making brownies or taking us all out for ice cream.  My kids grazed all day, open kitchen.  We usually ate dinner together but often I made multiple mini-meals catering to each person's preferences (not surprisingly I did not love cooking).

Our first few weeks after diagnosis I found myself thinking "he can't eat that, look at all those carbs."  When I'd dial more than five units of insulin into his pen I'd think "we can't do this meal again."  I'd heard our team of experts talking about food and how to not create eating and food issues for our children with T1D but it was hard to keep it in my head.  We like a popular take n bake pizza place.  We looked up the carbs and decided a splurge would be good for him to feel like not everything was changing.  Before diagnosis he was a picky eater who grazed all day long and now we were having him on a regular meal schedule and scheduled snack times.  I had found his appetite was different maybe because of the schedule but probably because the insulin we were giving was allowing his body to use his food the way it should.  We figured he'd eat two slices of pizza, he usually just ate one.  That night he ate four slices of pizza plus his fruit (no veggies).  Double the carbs we had covered for!  When he reached for that third slice I was panicking inside "do I tell him no? do we have to give him more insulin? what should I do?"  My hubby told me I handled it fine and N never realized I was worrying.  After he doubled his meal we did decide he had to have additional insulin because each slice of that pizza was 25g of carbs and we'd covered for 50 when we needed to cover 100!!!  That number and those insulin doses caused me stress and uncertainty.

My coworker's daughter was diagnosed T1 a year and a half before our son.  She struggled with it at first but over time it has become a part of her everyday life and she seems to be handling it all so well.  I'm so fortunate that she has traveled this road ahead of me as she is now a great resource and a great comfort when I'm uncertain and confused.  I'm definitely not afraid to cry in front of her.  After I'd been home for a few weeks she came over and we shared some of our stories.  Not surprisingly, our reaction to the diagnosis of each of our children was filtered through our previous experiences and what we had known before and what we were learning now.  I told her about the pizza and she laughed.  Her family likes pizza too.  Her daughter likes chocolate muffins and chocolate milk.  Both our kids like treats and gummy fruit and things that have higher carbs.

As the days and weeks have gone by I am happy to say that I'm getting more comfortable with our numbers and my role in providing N with nutritious options.  We are still a family that likes hamburgers and fries, pizza, and take out but we try to make smart substitutions when we can.  We were given targets for the number of carbs N should have at each of his meal and snack times and we try to stay in those ranges without presenting entire meals he won't touch.  We substitute thin crust pizza from our favorite place instead of the regular crust and he still eats four slices but with the thinner crust it is a lower carb (still our highest carb meal each week though).

I'm also changing the way we approach our main meal.  No longer am I the short order cook of the family.  I make a meal and try to ensure there is one food that each person will eat as part of that.  Thankfully my teenager's tastes have really branched out over the years and he is willing to give just about anything a try.  As for N, he prefers known foods and for his foods to be pure/separate.  He doesn't like casseroles or mixed foods.  We put a veggie tray, salad, or vegetable on the table for every meal but, under our care team's advice, we don't force anyone to eat anything.  We just make sure healthy options are being served and people are modeling eating them.  Tonight we are about to have burgers, fries, acorn squash, veggie tray, and lemonade for dinner.  I can't say I've started LOVING cooking but I am starting to gain confidence in dinner and I can see that I may even start enjoying cooking in the future.  Hubby and I are now creating dinner together which offers more visiting and bonding for us too.  There are definitely perks.

Those numbers are still always on my mind. I still worry about the numbers and if we are doing the right things.  I worry that 40g of carbs from a burger is not the same as 40g of carbs from fruits and veggies.  No one in my family seems to like any veggies (including me).  We keep serving up healthy foods, the adults keep eating the healthy foods (even when we'd rather have cake), and we keep making small yet sustainable changes from white to wheat, from thick to thin, from fried to baked.

I'm hopeful that by the time N is an adult he will have some healthier habits with his eating.  I'm noticing a lot of joy at our dinner table and it is nice to have ten minutes of family bonding time.

I'm not kidding, it takes 30-60 minutes to make food and they sit at that table for about ten minutes.

Things are different now but not so very different.  There are some positives if I pay attention to them.  We can do this!

Monday, January 27, 2020

From Emergency to Children's Hospital

We got N's diagnosis on a Sunday morning at about 1 a.m. in our local emergency room.  Things moved pretty quickly from there.  Our hospital often transports pediatric patients to a larger city Children's Hospital about two hours away.  The emergency room doctor gave me the diagnosis and told me what they were doing to treat my son who was in diabetic ketoacidosis (DKA).  DKA is a life-threatening problem that occurs when the body starts breaking down fat too quickly because the insulin isn't there or isn't doing it's job; the liver responds by turning the fat into ketones which causes the blood to become acidic.  The breathing my son was doing was his body's attempt to bring down his acidity.  They were treating him with IV fluids and insulin and were already coordinating with the Children's Hospital to transfer him.  Our ER doctor warned me that he would go to the Intensive Care Unit (ICU) at first because of the DKA.  The weather that night was super windy and rainy and they were concerned the ambulance would take too long and possibly get stuck in traffic so a helicopter was coming to pick him up.

Things settled down in the room we were in and I had a chance to give my son a hug and stroke his hair.  My ten-year-old doesn't usually like these displays of affection in public but he didn't seem to mind that night.  I told him we knew what was wrong and we were going to be able to get him feeling better over the next couple of days and that he was in good hands and could sleep if he wanted.  He was out a few minutes later.  A nurse hugged me and told me she was sorry all this was happening and that my son has diabetes but I just told her thank you because I knew the problem and I knew we could work with it.  We can't cure type 1 diabetes (yet) but I'd had a friend with type 1 in my twenties and his life had seemed to be going pretty well so I knew we could work it out.

So, the helicopter is small and is set up as a self-contained emergency room.  When the crew arrived to pick my son up they wanted to weigh me to see if I could go with him.  I needed to be under 150lbs...I didn't bother to get on the scale but I did chuckle and thank them for their grace.  N went in the helicopter and my husband and I drove the two hours to the new hospital.  My sister, who had taken us to the ER, went back to my house to break the news to my sixteen-year-old when he woke for school.

When we got to N's new hospital room (ICU) he had just barely arrived and they still had the gurney next to his bed.  There were so many people in there that we weren't sure who to talk to.  My sister is a nurse, my mother is a nurse, and several others in my extended family are nurses so I always look to them.  Our ICU nurse was wonderful.  She made sure I knew what was happening at every step and my training to be a type 1 diabetes mom started the moment I arrived in that room.  She told me everything she was doing and why she was doing it and under what circumstances I would be doing it too.  I didn't sleep much in the 3 days we were in the hospital but I learned a lot.  We were at Children's Hospital Monday morning (3 a.m.) and we went home Wednesday afternoon (1 pm).  In that time we met with an endocrinologist, a dietitian, a nutritionist, a counselor, and someone (I don't know what his title was) who explained all our supplies to us.  We learned about counting carbs, calculating insulin to cover, how to correct for lows and highs, sick day management, how to check blood glucose levels, and how to give insulin injections.  We gave our first insulin injections to our son under the supervision and coaching of the nursing staff.

The best part about being in the hospital was having experts around all the time helping us to learn our new skills.   We were anxious to get home though since our teenager was home alone, we were far from family and support systems, we weren't able to sleep very well, and my son was tired of eating his food cold.  We would order his meals then have to wait for them to arrive in his room before giving his insulin since sometimes the kitchen would get behind and ordered food could take up to an hour to arrive.  He'd then have to wait 15 minutes before he could eat.

We left the hospital on Wednesday afternoon with hundreds of dollars in diabetes supplies and our new worries and anxieties.  Thankfully I am a teacher and we were a little more than a week from our winter break so I made arrangements to take those days off to meet with my son's school and to get our house in order for our new life with a child with type 1 diabetes.

N was so happy to be home.  He was also uncertain about what his new diagnosis meant for him.  He needed encouragement to get back into his familiar routines and activities.  The first afternoon home he wasn't even sure if he could be in his bedroom by himself.  That night when I tucked him into bed I was so relieved; he was so much better than just a few days before.  The last time I had tucked him into his bed I'd been so worried and uncertain.  This time I was anxious for my new role as a T1D mom but happy to have him home and healthy.  A few hours later, as I did his 3 a.m. blood glucose check for the first time at our home I realized I'd left all our expert support behind at the hospital and I was now expected to know the answers.  Thankfully our team at Children's Hospital had given us the Pink Panther book and phone numbers to call and call we did.

Sunday, January 26, 2020

Diagnosis Story

It started on a December Sunday when my 10-year-old son returned from a weekend visit with his dad.  He hadn't felt well over the weekend and had spent most of the time watching television from a couch.  Usually he and his dad spend time outdoors so this was unusual for him.  I kept an eye on him but he just seemed a little off so the next morning he went off to school.

Two hours into the school day and I get a call that N isn't feeling well.  No fever but complaining of stomach pain.  I pick him up ten minutes later and we take the rest of the day off.  No symptoms all day.  He seemed fine but just a bit tired.  I keep him home Tuesday just to be safe but again, no symptoms.  Wednesday he is back at school.

Right about lunchtime I get the call from the school again that N is in the office not feeling well.  He NEVER goes to the nurse so she is concerned.  We talked a bit about his lack of symptoms and fever but I decide to take him home.  The rest of the day he hangs on the couch watching television.  No fever, no stomach issues, just tired.  Thursday the vomiting began after eating and I though, "well, there's the flu".  I call the pediatrician and get the symptoms for this year's illness and sure enough it matches: tired for several days then vomiting some with fevers and some without.  I'm told to watch for dehydration and come in if he isn't better in a day or two.  Thursday and Friday he has times of tired and times of seeming like he is on the mend.  The vomiting was infrequent (3 times throughout the day) and we haven't seen it since Thursday so I figure we're on the right path.

Saturday night he comes to find me after his bedtime to say he can't sleep.  His breathing has changed to an audible breath and my level of unease goes shooting up.  I spend the night on the trundle bed in his room.

Sunday morning I call the pediatrician to come in but they can't see us until the afternoon.  I was so uneasy with the look of him, the sound of his breathing, and by this point he was having trouble with his balance when walking.  So we decide to take him into the urgent care clinic rather than wait for the appointment.  At urgent care they draw blood (no easy task because he is dehydrated) and check him over.  Their lab isn't open weekends so we are sent home with a prescription for some antibiotics for a possible sinus infection (because of the breathing which is now pretty forceful blowing out through his nose) and told to keep him on fluids like pedialyte or gatorade to rehydrate.  They say they'll call us if they find anything in the blood work but without a fever they are sure it isn't flu.  We cancel the pediatrician, pick up the meds and fluids, and spend the rest of the day pushing those fluids and some mild foods like toast and banana.

Sunday night I hunker down on the trundle bed again but I'm not sleeping at all listening to his breathing.  It is getting worse.  I've already decided by ten p.m. that we are going into the pediatrician in the morning.  N is sleeping fitfully and complaining that he can't sleep because his ribs hurt (probably from the forceful breathing).  In the middle of the night, I move him to the recliner in the living room to see if I can get him more comfortable.  As he tries to sleep I'm just watching him and feeling overwhelmed.  I finally called my sister who lives nearby; she's a labor and delivery nurse so I knew she wouldn't panic or overreact and I thought maybe she would come over and make me feel less worried.  She doesn't live far away so she showed up a little after midnight.  She took one look at N and said "get in the car, we're going to the emergency room".  She sped the whole way!

We pulled N from the car and went directly to the emergency room desk where I finally lost it.  Tears streaming down my face I said "my son can't breath and I don't know what to do". Those people in the emergency room...they are quick, efficient, and amazing. I am completely grateful for their quick and supportive care of my son.  Into a wheelchair he went, pulse oxygen monitor on his finger said he was getting plenty of oxygen and we're taken back to a triage room.  He's moved into a bed.  Many, many people were bustling around hooking up this and monitoring that but one nurse took a moment to let me know he was in good hands and they would work it out.  It was less than ten minutes from when we arrived in the ER to when the doctor came in to tell me "we know what's going on and this is going to work out fine...your son has type 1 diabetes."  then he smiled at me and said "I bet you didn't know that."   Well no, I didn't know that, but as soon as I heard it I felt relieved.  I know everyone who gets this diagnosis for their child feels differently but in that moment all I felt was grateful that we knew what was going on and that type 1 diabetes is completely treatable and people who have T1 can live long and happy lives.  Isn't that all we want for our children?