Good evening everyone.
Andia and I had a 2 hour training course today regarding Chiane’s Hickman lines. “Do’s and Don’ts”…. Cleaning it; checking it… A list of things we need to check on a daily basis. Instructions re what she can and can’t do. We had to practice to repair and replace it if breaks, or if the caps come off. Worst case scenario – if they get caught on something while she walks and get ripped out… What we have to do is not panic even though it’s linked to a main vein close to her heart! Ahhahahhahha (that was a nervous laugh!)
Bathing is a whole new challenge. The plasters are not allowed to get wet because it can cause infections. If it does get wet it’s back to the hospital. Cleaning it twice a day is something that will become part of our routine. Checking her temperate 4 times a day will become routine. If it goes above 38 we need to inform the hospital and check it every 15 min, if it goes above 38.5 we must go to the hospital immediately, because it can be an infection and it COULD be fatal if not treated as a matter of urgency. We were introduced to all sorts of blood count charts today which was new etc etc… Loads of info, loads of practice… We were sent home with an emergency pack that has to be with Chiane whereever she is or goes.
Everything is slowly Changing. Picking her up for example… We can’t just grab her under her arms and lift her… We kneel, support her under her bum and pick her up. Estian and Chiane can’t bath together until therapy is over etc etc etc.
Tonight we will spend our time reading and isolating a few natural products and study it in depth to present it to GOSH (great ormond street hospital).
How is Chiane doing? Very, very well. She is mentally coping very well. I told the hospital I’m going to spray paint her hickmans pink and they almost got a heart attack! I think they will get used to my humour! Estian is getting a lot of attention as well and he looks good. He starts speech therapy next week and it will be every Thursday for 2 months. We keep a close eye on both of them and we support them 1000%. Estian is doing very well but, we noticed that his speech has improved a lot since he started therapy in March this year; he is now going for a 2nd term. It did him good and we felt we need to continue with him. We are waiting confirmation re his MRI scan.
Chiane’s egg on her head looks better and we are now doing the dressings ourselves. She is going in Monday morning at 8:30 to see the neurologist re her head and 9 am she will go for kidney and liver tests. If all is good then they will start therapy at 10:30 am.
Chiane is as ready as can be. So far, she has been handling everything very well, because every step of the way we tell her everything so that there are no surprises (not about the success rate of course!!). We prepare her every time and she knows what’s coming. It does help her!
We hope you all are well and we thank you all for your kindness and words of comfort.