Today I got up early. Gloved up, apron on, mixed up IV drugs. The smell of alcohol wipes at this time is not kind. I give a very sleepy Isaac the drugs. I only need to nudge him, and he rolls so I can get to his IV line. He dozes, handsome, and I marvel at how he got so big and wonderful. I leave him to sleep a little longer, he looks exhausted even while asleep. Back downstairs I get his nebulisers, physio equipment and tablets ready for his normal routine. I have my first and favourite cup of tea of the day, the sun is still rising.
Then I wake Isaac up, he feels grotty. Then Anouk (who gives THE best waking up hugs ever) and Rosa, who both tell me they have tummy aches (please no more bugs).
Isaac does his physio, meds and nebs, and drinks warm milk. He looks pale and doesn’t want to eat (start of IVs is always hard, and he is beginning to cough more). I wash and sterilise the neb equipment while the kids get dressed for school. Argue with all three about whether they are well enough for school (they are). I pull on the least creased clothes I can find. From upstairs I hear Isaac begin to vomit; into the kitchen sink. Sigh. Consider throwing everything that was in the sink into the bin, but the sick is just milk and tablets, so clean up best I can and throw it in the dishwasher.
I then realise all school shoes are muddy, and scream internally. Rush girls to school, walking Obie at the same time. Shoes get muddier still as I have to venture further into the park than planned to pick up a poop, and Rosa follows me. I stop caring about mud. Rosa cries as the teaching assistant takes her hand and coaxes her into school; this happens everyday still, and it never gets much easier.
I get back to an empty house. Isaac has managed to go to school, despite feeling rubbish. I look into the games room (our converted garage, a den for the kids) for his discarded clothes, and the bloody door handle breaks off in my hand as I lock up. I can’t then open it. Shit.
Then I call our community nurses to see if they can come to do the blood levels Isaac needs today. No answer. Just after, our CF nurse calls to say the community nurses can’t come, and we need to take him into hospital this afternoon instead. Community nurses then call to say how sorry they are that they can’t fit us in. So lovely, we know they could if they would. So much of CF care is spent on the phone organising things; Dan and I both work full time, and just the admin of CF can feel like another job on top of that.
I have a work meeting 1-3 I can’t miss, so call Dan, he will sort it out, thank f**k. Confess about breaking door handle, maybe I don’t know my own super strength? Then I call school to tell Isaac about the change of plan for the bloods, but I can’t get hold of the usual wonderful lady who helps me out with this kind of stuff, so eventually leave a message with the lady on reception who kindly promises to track him down (at lunchtime, in a school of 1200 kids). He is expecting bloods at home, so won’t be pleased to hear he’s got to go up to the hospital again. Feel guilty that I’m not there to explain.
Home delivery of Isaac’s drugs turns up - 4 huge boxes full of drugs which I need to fit into an already packed meds cupboard. Realise they have sent more saline that I don’t need. Now have 420 vials. Sigh. Drink more tea, staring at the boxes ineptly.
Then I call into my work meeting (on Skype, thankfully working at home today). One hour in, Isaac walks in. Dan’s dad has kindly picked him up to take him to the hospital, but Isaac is refusing to go. Spend ten minutes pleading with him, whilst also trying to listen to the meeting. Explain that he must have the blood test as his liver and kidneys could fry if the blood levels were too high, and he could even risk deafness. It doesn’t work, but a promise of Sams kebabs tonight does. I get it (not the kebab bit, I’m a veggie) - we were at the hospital for 5 hours just yesterday and he’s tired.
Then I finish work and run to school for a meeting with Rosa’s teacher. Our darling girl is struggling with school and life in many ways that I won’t go into here. The teacher is so kind. Having spoken to Rosa in a number of different ways, they feel that much of her anxiety and behaviour is down to her worrying about Isaac and her attachment to me, wanting to be with me, always. She is so so loved, but this has not yet given her the skills to embrace life outside of our home. I walk back with Rosa in the grey rain, glad to have my hood up so she doesn’t see that I’m crying. Feel guilty x1000. Get home. Dan has sorted out Isaac’s meds and nebs and he’s already doing physio. This gives me time to make a den with Rosa and cuddle her very hard.
Then it’s back to mixing up IV drugs for the evening, and I hook him up to the Tobi infusion. I talk Isaac into drinking the liver-saving medicine again that caused his vomiting earlier (this stuff tastes badddddd). Anouk and Dan go to football. I cook (lazily; pasta) and set up IV drugs ready for first thing tomorrow, when we’ll do it all over again. Isaac uses pliers to get into the games room, and I crack open a bottle to toast surviving the day.
Dan and I are very different in one particular respect; him, the lark, up at sparrows-fart every day for work/football/fishing, never able to sleep much past 6am. Me, the night owl, the bookworm, often found lost in words or music until late. So getting up for weekend IVs is a struggle.... but sinking down afterwards, back in a warm bed, cuddled up with one of my gorgeous kids, ahh.... double the pleasure... then I sleep like an angel. Have a great day x
Klee ❤️
