Week 4 // 2018

2 days overdue publishing this post but last week was abit of a mess, Henry was ill, I was ill and we had a snivvly time cuddling up at home.. roll on next week to be the end of drizzly January and bring some nicer weather..so here is my post about our clinic the week before:

Last monday was Henry's first CF Clinic of 2018.
For the first year of his life we used to have to go to clinic every 2-3 weeks at the Brompton (and that's not including when he might get ill in between clinic's and i'd have to take him in for more cough swabs and checks) and now its every 2 months! That first year was awful, no rush of new baby excitement, it felt like it was all about henry's CF and that it would be like this forever...but it does get better, and my hope for any parents who have had a baby with a CF diagnosis recently is for them to read this and feel abit more positive, that the first year is particularly difficullt, even just having a baby for the first time, it might feel like alot to learn and struggle but you do get into a routine and most importantly it takes time to know your baby and what they can handle or can't and it does get more manageable.

Henry's clinic went really well. I met the head CF doctor at Exeter Hospital who was fantastic and very helpful with new information and questions:

• The big news is that once he turns 2 in May '18, Henry can finish daily antibiotics and just use them when he starts a cough or has a cold. I have been pushing for this so much for over a year. The good points of daily antibiotics is to keep any serious infections off his lungs to prevent damage, but the bad points are the effects on the rest of the body of having daily antibiotics.

• Vitamins- I was hoping to get his Vitamin K / Vitamin E /Vitamin C drops all in one instead of 3 different liquids which can be abit challenging to give every lunch time with a syringe but they are not ready to be given out on the NHS yet.

Henry's daily vitamins

• I was worried about Henry's fingernails and toenails breaking in half but he said this may have been from a bad infection 2 months ago and it is coming out in the nails this way.It is called Beau's Lines and if it continues we can request to see a dermatologist.

• Hypertonic Saline Inhaler- inhaled once a day to be upped to twice a day if he is chesty. I am fortunate that Henry takes this very well and his chest finds it ok, as some people can find it prickly. I asked if there was much point in it seeing as we live by the sea and go to the beach most days and he said yes as it is a much stronger solution of salt and like standing at the edge of a cliff with the sea hitting your face! Descriptive but helpful to know.

hypertonic saline inhaler

• We discussed for the first time, to use a Pulmozyne inhaler into his physio everyday which acts like scissors cutting up the mucus in his lungs. To be used alongside the saline inhaler. Henry will be fairly young to start this but hospitals vary when to start using this.

• They were really impressed with his ability to blow in and out with his PEP mask, which I think started early on as I introduced straws early so he got used to sucking up air.

Aged 10 months

I find clinics overwhelming and alot of information to take in. My problem has always been the way the doctors/nurses/physios talk to me like I am a professional and have had the same medical training as them! I don't understand all the words they are saying..hypertonic saline, augmentin, nebulizer etc etc and its alot to suddenly have to start learning as well as just doing your full time job as a parent.

xx