Back & Forth - Christmas , New Year, Jan - Feb

Over Christmas Harrison had an infection in his central line, and they Used Vancomycin antibiotics to treat this. Now for those of us out there who have immune deficient children, you will know ( and most likely love) this stuff.. However in Harrison's case this is not working. The doctor's are ordered daily cultures to be grown from the central line lumens ( his dangly lines hanging from his chest). They take blood and basically culture it to see if it grows anything, and despite all good effort, this was still happening. So a decision was made to transfer us down the Westmead Children's hospital, so the staff there could acidify the line and hopefully clear the infection.

Yes, this is just as scary as it sounds.Acidification is the process of injecting Hydrochloric acid into each plastic lumen and leaving it for 10 minutes, then aspirating (sucking the acid out of) the line and then flushing with saline to clear the line. This process is then repeated 20 minutes later and then a third time. The plan is to kill any bacteria in the plastic. It is actually a very interesting process.
And so the process began, by cleaning the outside of the line, injecting the acid, aspirating, flushing and then redoing the process 2 more times - 20 minutes after the last time. The whole process takes about 1 and a half hours. The acid when aspirated, comes out as a brown (almost rust coloured) gunge - lovely!!! :-) Then we were transferred back to Gosford, so that 24 hours after the acidification, the lines again had bloods taken from them and cultured to see if any bugs grow. Of course, bugs still grew - Nothing Harrison does is simple after all!! Normally at this point the bug woudl mean central line removal BUT we went for a visit to Westmead again on the 16th Jan for the BMT team to review Harrison. They drew bloods fromthe white lumen as it was uninfected and decided to do a Vanco lock ( Vancomycin antibitic injected into lines and left for 24 hours and changed 2 times) - This which actually worked. Acid can't kill it but antibiotics finally did. In the end we left hospital the week before school started for Marlie, on the 23rd jan but weren't officially discharged til the 25th.

So we were lucky to save the central line as Harrison still has to undergo IVIG monthly - locally at Gosford Hospital. We are becoming almost part of the furniture there these days!!

Of course all of this and some added financial pressure saw Scott and I separate - which was my decision and we have been working hard to see if we can resolve things. Scott is trying very hard as I am - with much counselling on my part to resolve issues I have re Harrison's illness and my guilt over it all. Its amazing how when you are feeling down that you take it out on people closest to you. I'm not saying that I am an angel or Scott either, and we both have things to still work on individually, but we are working things out which is very positive.

Marlie started "big" school on 31st January and so it has been a bit of an effort getting her to and from school with no car - lucky mum moved closer so we often go there and get her before or after school - not such a far walk - which is ok for Harrison as long as I can keep him out of the sun due to the Bactrim antibiotics, or the rain - bad for his chestiness - he has a chesty rattle still since January but it hasn't worsened luckily.

In January they did a lot of testing and found he is about 60% of the way transplant wise but the B cells are very slow to respond ( the importance of B cell s is to make the immunity) And the toxic metabolites went back up a little - which is not so bad but if things don't drastically pick up in April then we are still not out of the woods yet for a second transplant.

Also Harrison has epilepsy - two types actually which is hampering his efforts in development a little ( not much but still...) He has ATONIC seizures - he loses complete muscle tone and literally drops to the floor. This last all of a second and he gets up and keeps going. I thought it was just his funny crawling style for a while but then we had a paediatrician review and he asked about it. Needless to say that when he stared on Tegretol for this it stopped happening and he crawls quite normally now. With the slight exception of hitting his head on walls and furniture - he doesn't look up very well so uses his head to let him know when he has reached a point of no return. not pretty as he ends up with quite a few lumps and bumps and bruises on his head - but he has not given himself any serious damage yet so I will keep an eye on him or just lock him in a padded room!! :)

February was reasonably uneventful - just lots of Chiro and Physio to help Harrison with his development. He carries his head tilted to the left - its very obvious and most of his photos show it to a degree, and all the treatment has helped a little but he is still got a ways to go with this.

He has also learned how to stand. He is getting quite good actually, although he tends to get up on his toes, wobble the hips ( Elvis style) and then fall to the floor very ungracefully) - But he just smiles ( or has a sook, then smiles) gets up and tries again.

The central line has stayed clear now since January and we have come to March. ... Ha ha next post for the March bit! Last lymphocyte count was 0.7 - up from 0.5 but no where near the 4.0 we'd like it to be!!