No Spoonfuls of Sugar Here

Having a positive attitude to taking her cystic fibrosis medicines helps my 23 month old take her morning medicines with ease. Recently she’s decided she wants to do them herself. Took a long time for her to get to this stage. Many of these, especially flucloxacillin, taste not so great. Next steps will be her own Creon and much more. Normalising this with positive language. No vile, yucky stuff here. We love CF meds to keep her healthy!

Impatiently Waiting

Dolly is getting a wash.

Dolly is getting a wash.

Still no microbiology results. It’s been a week since her admission. I started to worry about the lateness of this results. Largely in part due to her newborn screen taking three weeks as they verified her rare CF gene. I started thinking they are repeating things. Something must be bad. But apparently everyone’s are delayed due to the bank holiday. I hope so. I really hope so.

One week down and I cannot wait to pack up her things and take her home. The thought of one more week is driving me mad. I feel that the family is fragmented into small bits and we are all apart. Zac is being looked after by our lovely nanny Jema, he’s managing somehow. Minty wakes up each morning and calls Zac through the door. My older girls are trying to keep themselves busy this half term, largely looking after themselves as I cannot take them anywhere really. It feels like I’ve not seen them at all in weeks. I miss them all. I just want us all together in one house at the same time. It’s made worse by both my husband and I have a particularly bad run of shifts at work. We’ve not had a weekend together as a family in two months. But that’s another story.

Minty has changed in the past week. She has grown up. I’ve changed. We’ve all changed but I don’t know how. You would never know in looking at her what she is taking in her stride. Her long line is still leaking but still in place. Her wee smells bad, one of the antibiotics I assume. She’s coping well in one small room. The room is hot. Stifling at night. It’s hard to sleep. It’s no wonder patients spike temperatures all the time. We run in and take cultures when perhaps all that’s needed is a open window! She’s taken to cleaning the room with baby wipes, then sucking them. This is driving my CF mum and infection control side bonkers. She wipes the bins, under things, cupboards, then wipes her face, sucks it and laughs. Argh!! When I take away the offending wipe she screams in utter fury. How dare you, she looks. She then wipes the floor, our shoes and then her face. My mind boggles with MRSA, E Coli and who knows what else. The more I try and stop her, the more determined she is. She sees the cleaners in the room several times a day and is copying them. She gives meds to her dollies and who knows, perhaps one day she will be a doctor or a nurse (I hope not!)

Being on the other side of ‘doctoring’ I am so much more aware of how patients must feel. We wait. We wait all the time.

For results.

For medicines.

For ward rounds.

For time to pass.

For medicines to work.

For tests.

For going home.

For drinks.

For meals.

For discharge plans.

For discharge letters.

For discharge meds.

We learned in medical school how patients adopt the sick role. To a certain extent you have to as everything is beyond your control you have to accept that you will wait and rely upon those around you. The waiting is of no means a criticism of the staff that are caring for her. They are caring for loads of other patients too. We are all flat out. It’s the way the system seems to operate, the culture of being in hospital. I never fully realised when you sit there waiting all day to chat to the doctors, the few minutes they come in and out is a flash in a very long day. You always are left with questions.

On a positive note, we’re learning some great new physiotherapy techniques from her twice daily physio sessions. She’s enjoying them and we can’t wait to add them to our routine at home.

Tomorrow our Magical Minty Skydive Team is collecting money for the CF Trust. Very exciting indeed. A permit has been granted by the council, so in Park Street and Queen’s Rd, Bristol buckets and t-shirts are out. We may try and pop out if we can. It’s only 1/2 a mile or so from the children’s hospital.

Thank you to everyone who has supported us so far. Thanks for messages and emails x

Cystic Fibrosis is… Our fundraising video for @cftrust! Please share! @cfaware

This fundraising business is huge fun. Humbling, overwhelming and building great bonds with community, friends and family. If you can’t donate please share our video. Huge thanks to our team member and producer Rachel Cowie. Huge thanks to everyone who participated so far.

Donations welcome – http://www.justgiving.com/mintyskydive Thank You!