Hot Spots and Dry Botts (Day +171)

Time for another update I suspect! 

Non-medical stuff

We are still at home and things are quite stable. Max is very happy to be home and spends most of his days playing with his cars and watching re-runs of Top Gear. He can now pretty much recite word for word the majority of these DVD's and seems to become more and more excited each time he watches them. His car knowledge is astounding. Each time we venture onto the freeway on our trips into the hospital, Max gleefully points out to me the make and model of each car we pass. He then goes on to tell me whether or not he has a car like that at home....if he doesn't ..... his request for one is usually made very clear. I have a huge stash of cars at home and make sure one is packed in my bag ready to give him upon exiting the hospital. It is always a challenge I set for myself, to find a car similar to the one I have in my bag, and exclaim to him..."oh look at that car - you don't have one like that! If you are a good boy I might just be able to find one for you?" This usually gets him quite excited and I am always happy to be able to end the hospital day on a good note.

I have attempted to broaden his daily activities and try to drag him away from Jeremy, Richard, James and the Stig. A few days were spent successfully making puppets which he loved doing. Here are the finished products.

He is eating and drinking well - although very fussy with his food preferences - unless it involves pasta with butter, ham and cheese.  

Medical stuff

Max's white cell and neutrophil counts plummeted a couple of weeks ago (White cells - 1.5; Neutrophils - 0.4). This was very concerning as a neutrophil count less than 0.5 is considered to be severely neutropenic. The last time Max had counts that low was when he had just completed his course of high dose chemotherapy and everyone that came in contact with Max was required to be completely gowned up and masked. As a consequence I was instructed to start giving Max daily GCSF injections, as was done in hospital, which is a hormone that stimulates the production of his white blood cells. This injection is a very painful one and I hated having to do it. It is not the needle that is painful, but the actual hormone that has to be injected....slowly. After the short course of GCSF, Max's counts rose nicely......but at our last review they had started to decrease again. We are going in again on Friday and I am rather nervous about what the counts will be.....

Max has been having physio sessions each time we are in at the hospital. He does enjoy these sessions, and despite being in considerable pain at times, he is getting stonger and more determined each day.

Last week marked 5 weeks into the the six week course of IV antibiotics Max has been prescribed, due to his suspected osteomyelitis in his leg and spine. As Max has still been complaining of constant pain in these areas and is still unable to walk without assistance, Dr KT arranged for another bone scan to see what was going on. So last Friday, Max once again proved to be an absolute champion, lying so still for close to an hour whilst the huge machine sat millimeters from his face. All the staff were so impressed.

The results of the scan showed that the original 'hot' spots from the first bone scan were gone - great news! However, new 'hot' spots had appeared in different places - and there were more of them. Naturally, upon hearing this I had to compose myself in order to reluctantly ask the question....could it be cancer? The Dr replied that he was 99% sure it was not cancer, but instead either chronic recurrent multifocal osteomyelitis (CRMO) or avascular necrosis (AVN). Both horrible and very rare conditions. Very little is known about CRMO, and there is no known cause or cure......and AVN involves lack of blood supply to the tissues which causes bone death.....obviously this is not good and would require bone grafts or removal!

Consequently, as the initial diagnosis of osteomyelitis (due to a bacteria) was incorrect, the Dr's had to go back to the starting block to work out which one of these new possibilities was the cause of Max's pain. Another X-ray was arranged for Monday. I spent the weekend doing exactly what I shouldn't, and looked up all the nasty effects and prognosis of these two conditions. Honestly I was just preparing myself for the worst. I was in tears for most of the weekend and really not a pleasure to be around......sorry Tim!! xx 

To top off this shocking weekend, some douch-bag decided to side swipe my car whilst I was shopping, leaving me without a drivers mirror. After much mucking around (but thanks to a lovely witness to the crash) the police managed to track down the culprit and I am now waiting for a convenient time to get it fixed.

Monday arrived, an x-ray was performed, and to my absolute pleasure numerous fractures were identified in Max's spine. This means that potentially it was fractures - due to osteoporosis - creating the 'hot' spots and pain, not the other conditions. Crazy really, to be so pleased with your son having multiple spinal fractures, but that result is such a relief compared to the other illnesses we were potentially facing. Dr KT called us to inform us of this result and requested that we make an appointment this Friday to get Max fitted with a High Taylor back brace.  Naturally all the orthopaedic surgeons are away for two weeks, but at least we can get the ball rolling to get the brace sorted.

Oh yes, there is some imminent and exciting news coming soon to the Finch household................

....... bye bye nappies???