Day 1 at home on IV's

Yesterday morning Graces nurse came out to access her port ready for IV's. It was very smooth and quick and she didn't bother at all (hooray for entinox!. Grace has never been better since we switched to entinox gas to gain access, before when we used amitop cream she would start panicking as soon as we had put it on the port area.

We spoke to the nurse about the e-flow as she had brought it along with her but the part I had ordered (drug chamber and filter) came without instructions so I didn't know how to prepare it. She did a test dose of saline to show us how it assembles and agreed to meet us at the hospital at 12.00 to do the dose for real. We arrived at about 10.45 and was shown to a room to drop Graces stuff off and then had to go to do a lung function test. When we arrived back from lung function Grace had to then do the test dose of tobi in the new machine.

Well we certainly wasn't prepared for the reaction. Grace couldn't keep it in her mouth to inhale more than twice without coughing and wretching! Apparently it has a taste sort of like aniseed or mint (both of which Grace can't stand, it was a nightmare trying to get her to use normal toothpaste)anyway she became very distressed and we had to keep switching it on and off and it took around and hour to do a 2 minute dose. She kept crying and crying so the nurse went down to the hospital shop to get her some fruit pastels to try and suck one whilst inhaling but she just ate the sweet and refused blankly to let us put it back in her mouth. Eventually another nurse said why don't you just hold it near your mouth and inhale? Well that worked enough in order to finish the dose.

After that traumatic experience we then did refresher training on IV's and administered tobi and meropenum and Grace waved to her friend from school who has asthma and was on the opposite ward,three nurses, Mark and myself then had a go at doing the blows on the lung function machine, and then went off to Starbucks for some therapeutic cake and coffee.

When we got home I got physio out of the way quickly so that we could do the dreaded tobi nebs. Grace was a little panicky but I told her she didn't have to put it into her mouth until she was comfortable with it, and I moved my new cushions out of the way just incase (chucked up on new shoes once when doing gastrographin). She coughed a little at the start but managed to keep inhaling and I managed to get her to put the mouth piece into her mouth near the end when the vapour was trailing off. It is very overwhelming and the vapour just billows out at the start and I think thats what made her panic, along with the vile taste (the nurse said she thought it tasted like gin and tonic, maybe I should have a few myself).

This morning I have kept Grace off school for two reasons, firstly, she is always a bit sore from being accessed for a couple of days and is very cautious in her movements, and secondly, because she has not had meropenum before I wanted to make sure she was ok with it before I left her to her own devices.

That means that I am unable to get to the gym today. Mark will be working until 9.00pm as there is late night racing and he is a member of staff down due to annual leave. So that left the only alternative of road running. I went out at around 6.40 and it was nice and cool and windy. I did a 25 minute straight run, and then had to walk round the block twice for my cool down, my muscles were very tight. I got home did some abs exercises and had a shower and was sitting on the bed chatting to Mark and Grace by 8.00am Grace has now had her first IV's for the day and Mark has gone to work. Now for the next dose of tobi nebs....................