Day + 336 No drugs and No tube!

2014 has begun well for Orla. Firstly, we saw the BMT doctor a couple of days after our return from Tasmania and received some good news.  Orla’s most recent blood test show her immune system has reached a level where she can now stop the antibiotic she was having twice a week to to assist it if she were to come into contact with any nasty bugs. This was the one remaining drug and hence Orla is now drug free which is obviously very pleasing. Orla’s immune system is not completely 100% normal, we are told this will take over 12months, but she is well equipped to put up a good fight against any viruses or bugs she comes into contact with and importantly too, her immune system would now be able to remember them. The reality of this means we no longer have to isolate Orla and are readjusting back into life as we knew it until 12 months ago. We are however a little more careful than previously, a side effect of dealing with so much sickness, we would like to avoid it for a little while at least! Orla’s immune system status also means she can have more immunisations and she had the first of a multi vaccine injection a few weeks ago which now means she is immunised as well as the average 2 month year old Aussie kid!

Secondly, Orla accidentally pulled her nasogastric tube out last Thursday. This never happens at an ideal time, especially so when it was 40 plus degrees celsius and the tube is only for fluids !! I’m not sure if it was the fact we felt the time was right, we really needed to dedicate the time to getting Orla to drink, or the strong desire to avoid Orla experiencing and us witnessing another nasogastric tube insertion that drove us not to return to the RCH that day and “see how we go”. It will be one week tomorrow and she remains tube free, looks rather different and we think feels rather good without it! She is managing to drink from a cup which has piece cut out to assist the person assisting her control the rate the fluid flows into her mouth. We are also needing to thicken the fluid that she drinks and coming up with a variety of creative ways of including as much fluid in her food as we can to avoid her becoming dehydrated…I never knew a weetbix could hold so much milk!! She is doing well and getting quicker but it is slow and tedious but, I must say, less stressful than the constant concern of the nasogastric tube being inadvertently pulled out. And Orla’s obsession with putting her hands in her mouth,  meant the dressing was more often than not wet and would thus lose its adhesiveness and constantly had to be redressed and reinforced. We are also hoping after 11 months of no drinking, Orla may possibly start to remember thirst which would of course be the biggest motivator of all for her to drink more.

Finally, today marks quite a milestone in Orla’s BMT journey. It was this day 12 months ago that she underwent her surgery in preparation for the BMT.  This included her Hickman line insertion, which got infected and dislodged and had to be removed and another inserted, an ovary removed, we will not know for many years if the chemotherapy she endured has made her infertile, and her second set of grommets inserted which are fortunately still in place. I remember the BMT consultant and registrar gave Ed and I are a tour of the BMT unit while Orla was having her surgery, it was just the beginning!!