Larkwood Life: Clinic day

Since Friday the days have whizzed by...the beginning of each month there are always so many meetings and in between all of them I squeeze everything else in so it doesn't leave much space for blogging...lol

Anyway, yesterday was clinic day and unless you live my life you will never know how exhausted I am at the end of a clinic day. This time I tried very hard to make things easier on myself by preparing the birds food beforehand. The only problem was I has a committee meeting the evening before and I had to wait until that was over and everyone had gone home before making a start on it. So instead of having a fairly early night which I usually have, I ended up going to bed at about 10.30!!!!! Early to rise at 3am as usual, the long trip there and back, plus all that fell in between and you may begin to know why I was so tired at the end of it. I know for the future NOT to have anything on the evening before.....

I must say that it was one of the best days in the last 2 years. NiQi's doctor is happy with her progress. NiQi discovered that her loss of sense of smell and taste is just as a result of her last infection and it will come back in time. The dietitian suggested she also add milk powder to her shakes and feeds, as it is extra kilojoules and will help with the weight loss from exercising. She has to try harder though to eat bigger portions or more frequently and take in an extra shake a day to really make a difference with her weight....something that is not easy for her, but try she will. She was given a new nebulizer by the Cystic Fibrosis Trust...and we were asked if we would deliver 3 more to her previous doctor at Steve Biko Hospital for other CFers on the way home....which we did. Although she is well now, the rumblings are there with the beginnings of a new infection, so she is being admitted on 8th December for 2 weeks....this is in line with her 3 monthly IV treatment anyway so it is fine and she should be home a couple of days before Christmas. Then the best news of all is that her doctor felt it is time to start on getting her listed for a transplant. She said it is better to be prepared and start the ball rolling now, instead of waiting until her year of exclusion is over. This will mean that they will place her on the list and be able to start matching her up with organ donors. It also means that should she take a turn for the worse and it become more urgent for her to have the transplant then there won't be a delay of paperwork beforehand. Isn't God just awesome in His planning of her life.....

Two things we learnt that may be of interest to anyone else needing a transplant - South Africa does not give lung transplant patients the option of having more than one transplant in their lifetime. If the new lungs fail or are rejected then that is it. In the USA and the UK, there is that option if a matched donor is found...so we will have to pray that NiQi's donor will be a perfect match of HEALTHY lungs and her body will not reject them for many many many years. The second thing we learnt is that the hospital she will have the transplant at, is offered lungs before any other hospital in the country because of the success rate and the number of operations they have already performed. If they reject them for any reason, they are then offered to other hospitals.

So yesterday was a GREAT day....best news we've had in a very long time....