Music camp notes

Sometimes words are inadequate, I think.  Some concepts, feelings, delights or horrors can’t always be articulated effectively with the boundaries of letters.  Sometimes we need to look deeper, and for me, that means listening to music.

Of the four of us, I am the only one who does not play an instrument.  I am writing this while waiting for TD at Beau Soleil Music Centre, where she is rehearsing with the strings ensemble.  They play beautifully.  She is also part of the school orchestra, one of three double basses in the 60 strong pupil group (aged between 13 and 18).  This past weekend, the school took all the orchestra, concert band and jazz band learners away on a music camp. (As I have already mentioned, it is a Very Good School.)

If you want parents of T1 teenagers to go weak at the knees and tremble slightly, just say the word “Camp.”  A lot of preparation, care and anxiety goes into sending someone with T1 on a camp.  Apart from the usual clothes, tuck, soap and toothpaste, I packed a loaf of whole wheat bread, sugar free jam, nutella, bottles of water, pronutro –a breakfast cereal- and Ensure (a meal replacement drink).  I also included extra iceblocks, extra insulin, needles, the food diary and a slab of chocolate for slow release evening carbs.  All of this had to fit into the tiniest of cooler bags so that TD didn’t feel too conspicuous, and her luggage blended in with the rest of the group.  (The fact that that her instrument is by far the largest in the orchestra did not escape my ironic sense of humour.)

Before any school camp, I make an appointment to speak to the teachers concerned.  I take along my “Camp Pack.”  It consists of a typed handout I give the teachers, my notes to make sure I verbally cover all the things I feel I want to tell them, an emergency kit and an orange.  I let them know what to look out for in highs and lows, where the potential dangers lie, and what to do if things don’t go according to plan.  I explain the insulin routines – the long acting insulin is injected at 6am and 9.30 pm, and how  the short acting insulin dosage  is calculated at mealtimes.  And then I give them the orange and show them the emergency GlucaGen Hypokit which is given to a person with T1 if they have gone so low  that they are unresponsive and unable to ingest glucose by mouth.  It is a life saving procedure, so I feel it is only fair to give the teachers a practice round.  Mixing the solution and injecting it is not as easy as it sounds, so a trial run is a good idea.

So TD went off to camp on Friday afternoon amid much excitement and a little trepidation.  Of course I worry when she is away: not so much in the day time, because TD is very capable of managing her diabetes and knows (usually) when she is going low.  It is the nights that make me fearful.  When she is asleep, she cannot “read” her body in the same way.  She won’t be aware that she is going low.  And she won’t know how low she is.  This is what I worry about.

All the parents are invited to a concert at the camp on Sunday afternoon, so that we can listen to the groups perform (and take our children home…)  It was a hot, hot day.  Roadworks meant we arrived only 15 minutes before the concert was due to start.  As we took our seats, TD came to say hello.  She had had a good camp.  She was unbelievably pale.  And her glucose reading was 2.2. This is breathtakingly low, and she says it had dropped very quickly.  Two sachets of glucose later, and still looking wispily pale, she and her fellow musicians put on an excellent concert.

This was her second low on the camp :  she had had another scary dip to 3 the day before.

TD made a lot of friends at Music camp.  She spent much of the free time in the pool.  She played card games.  They stayed up too late.  She wasn’t too sure about all the camp food : all the usual teenage camp antics.  It is an enormous responsibility the teachers take on, and I am thankful to the school for adding to TD’s memory bank of happy times.

Music is such a powerful form of communication.  When I listen to the school orchestra, and think about the power of co-operation and collaboration and leadership to bring about beauty and harmony  I find I don’t need any more words for a while.

So – here is a soundbite of the school orchestra for your listening pleasure:

Love Letter : a card game

So, this is how we roll:  TD was sick.  She had a bad dose of gastric flu, and couldn't keep any food in or down.  She had a high temperature, was listless and unable to eat.  I took her to the GP who has extensive and personal experience of T1 diabetes.  I trust him.  (A lot of other people do too - the waiting room was packed and we had a couple of hours to chill before he could see us.)  TD's ketones* were over 2  -that is too high, so he wanted to put her on a drip straight away.



The surgery nurse hooked her up in one of the treatment rooms, and I phoned home to say we would be another hour or two.  TD was stressing for two reasons: One – she does not like drips.  She has bad memories from the time she had a drip needle in her hand for a week at diagnosis.  And Two – it was the last day of her brother’s holiday in Cape Town before he had to fly back to the UK.  She didn’t want to miss out on those last few hours with him.

A few minutes after my phone call, my husband and son arrived at the doctors’ rooms.  TD’s brother had brought with him an-easy-to-play-even-with-one-hand card game, and so the four of us enjoyed some quality family time while the drugs and saline dripped into TD’s system.  Because this is how we roll.

The next day, TD had not responded sufficiently to the meds, so after dropping our son at the airport, and having spoken to Dr T, we took TD to be admitted to hospital.

Another drip in the emergency room :  this one took two nurses, one doctor and more than four attempts to put in.  TD’s veins are almost invisible, and even when found,  they are not receptive to big IV needles.  TD was distraught.  I held her head, shielding her eyes from the puncture bruises and tried to calm her a bit.  She dislikes hospitals even more than she dislikes drips.  And this time she had no brother to cheer her up.

The nurse on duty had a larger than life attitude and was Fabulous! The doctor on duty just seemed flummoxed. The whole diabetes thing seemed to throw her a bit.  She ran some blood tests, put up the drip, but was ready to send TD home when the blood results came back, without wanting to give the drip time to do its thing.  TD had high ketones -4 on admission.  We told the doctor we would wait for the drip to finish.  I massaged TD’s feet, Andrew played a logic game on his phone with her, the Fabulous Nurse checked in on us every now and then.

At last, a couple of hours later, the drip had dripped its last drop.  The Nurse retested TD ; Ketones 2, Glucose 22.  Now the doctor thought there might be a problem.  She suggested giving TD 10 units of fast acting insulin.  Andrew and I looked at each other.  We suggested treating her at home.  10 units was a worryingly large amount of insulin, and we were worried she would go too low.  TD was discharged, and we took her home.

Instinct can be a useful tool, and in this case, we were right.  By 2am, TD’s glucose number was down to 5, with no extra insulin given.  We had been right to monitor her at home.  The gastro cleared up with the prescribed antibiotic.  It had been a wobbly week,  and one that allowed a lot of introspection for me about what is important in life. Somebody stealing the house numbers off our front gate, a disappointing trip to a hairdresser, travel plans getting complicated - all background in that same week- all became trivia and annoyances rather than anything to worry about. The important stuff was all ok – TD got better, we had had a lovely family holiday time together, and when things get a bit rough the four of us form a gridlock of security for each other. I imagine that we were quite a sight, crammed in a small room, TD lying on the bed with a drip, the rest of us trying to squeeze into the space without getting in the way too much, playing a card game (It is called Love Letter if you want to get a pack!), guessing  as to who held which cards.  There were a few amused glances thrown at us. I don't mind what others think - because when a 14 year old is dealt the diabetes card, she needs to be surrounded by love and humour.  And that is how we roll.

A note on ketones:  If a person's body does not have enough insulin, and so glucose cannot be converted into energy, the body looks for alternative energy sources and starts to break down body fat and muscle.  Ketones are the acid by-product of this process, and their presence can quickly lead to DKA (Diabetic ketoacidosis) - a life threatening situation.

 

A moment of clarity

Happy New Year!  I am not one really for making new year resolutions. Are you?  My logic goes something like:  if you want to do something or change something, it is best to start straight away - there is nothing magical about the days rolling over to a particular number.  But I do have some odd notions about "laying ghosts to rest."

So, today, I am sitting at a table at a restaurant in the Company Gardens where, just over three years ago, TD, my excellent friend K, and I sat having a Christmas outing and catch up chat.  Some memories of that day are sharp, others a bit fuzzy.  I remember the three of us going to the National Art Gallery and being surrounded by great beauty and/or thought provoking works.  I remember warm sunshine as we walked through the summer gardens to the outside restaurant, and sat at a table in the shade of lovely old trees.  I remember ordering a chocolate brownie for TD as she hadn't been hungry at lunch time.  Everything should have been lovely, but TD looked at the food (normally her favourite), tried the tiniest nibble and tears welled up in her eyes.  She couldn't eat it. She was painfully thin.  I have to admit I felt a bit frustrated.  I didn't know until the next day that she was DKA.  I knew nothing about T1.  All I knew was that I was worried about her.

Sometimes places hold memories that are full of fear.  This restaurant is one of those places, and I have avoided it.  So, I am sitting here, alone, having tea, hoping to forgive myself for my blindness and ignorance and dangerously slow reactions three years ago.

This morning, TD and six friends and I went to visit the same art gallery.  The exhibits have, of course, changed.  The girls wandered round, splitting up into kindred groups.  I don't think TD could hear the thumping of my heart.  It was good to revisit the gallery and paint a different picture for myself.  TD and her friends are now wandering around the national museum, while I excused myself to sit here and drink tea.  It has been good to revisit not only the places but also the memories and depths of the self, and to look at them from the distance of time and expand them with laughter, happiness and maybe even forgiveness.

Resolutions come for me in moments, rather than years.  I have moments of clarity where I can see the bigger picture.  One of TD's friends brought home made chocolate brownies for them to share this morning.  She ate (more than one) happily, seemingly oblivious to my deja vu moment of three years ago*.  I resolved then to let go of the shadow of the tea room and gallery.  Or rather to let go of the fear of what happened three years ago.  TD, surrounded by friends and chocolate brownies, helped me replace the fuzzy memories with new experiences.

All the best for 2018.  May your have many moments of resolutions that bring you happiness.

* TD read the blog and showed me yet again, that she is way ahead of me in her kindness.  She deliberately set up today to remake the memory for us both.  Thank you TD.