Update #1: Day 3, 28 June 2018

Oh, Ohh, Ohhhh #ORKAMBI!!!!!

Today is a good day.

Matthew’s tolerance for Orkambi has been very positive so far. He started his full dose yesterday after his first day on a half dose was ‘unremarkable’ in terms of adverse side effects.

It has been a busy time in here with many, many sets of observations, four lung function tests per day (only one today) and three lots of intensive physiotherapy to support the treatment and movement of sputum from the lungs.

On admission, Matthew’s lung function was 56.2% (1.8 litres). It fluctuated slightly on day one and two between 55.3% (1.77 litres) and up to 58.76% (1.88 litres) for his last one yesterday at 1.30 pm.

Today’s lung function has climbed to 60.78% or 1.94 litres. It is clear to me that when Matthew is doing his lung function tests that it is getting easier to get a bigger breath in. Something I have seen diminish over the last 6 or so months.

Matthew is clearing gunk well and some patterns are forming that will help with establishing treatment plans at home.

The doctors are delighted as are the physiotherapists. There are expectations of severe initial side effects including problems with his breathing and airways being constricted, nausea, cold-like symptoms and headache, yet these are present so far.

Doctors believe, based on the research of others who are on Orkambi, that we could expect an initial and significant drop in his lung function too. This has not happened obviously with an approximate 5% improvement in just a few days, this gives us so much faith that it will most certainly help our boy breathe easier

I am one happy mama right now.

Read below for a short update #2!


Update #2: Day 4, 29 June 2018

Matthew is now home and doesn’t need to go back for a check for a whole month!

He also has been taken off all antibiotics which will give his body a beautiful rest and Orkambi the opportunity to work!

Thank you, everyone, for your overwhelming support. It means more than you know.

The fight continues . . .



READ our original piece here!