Well we had been in hospital for 10 nights now and the hospital were thinking about us being able to go home. At Southampton hospital we had been given a 'blue book'. These are similar to the red books children have when they are small recording weight, height etc. This one was A4 sized full of all kinds of information, telephone numbers for the hospitals and nurses, what to do if Billy was neutropenic, explaining all about the lumber punctures and bone marrow. A leaflet explaining the side effects of the steroids, diet sheets, blood count results etc.
I new nothing about blood counts before Billy was diagnosed but within a week or two I would become an expert. I can tell you what high and low counts in White Blood Cells, Neutrophils, Red Cells and Platelets mean and what effects they can have on Billy. I also know what to look out for which may tell me if his counts are high or low.
The Blue Book was to be taken everywhere with us. Any hospital would find it useful and know what to do with Billy when they saw it. It would have treatment records and current medications. The nurses and doctors went through lots of things with me and showed how to fill in the count results and why height, weight and other things are so important.
Even after everything being explained to me and me getting used to all the medications and temperatures etc I was still scared to death about taking Billy home. In some ways it reminded me of taking him home for the first time as a baby. It would all be new to me. I would have to do medications and temperatures at least twice a day. A high temperature is one of the first signs that he could have an infection. A high temperature is Billy's body's way of telling us something is wrong. If he had a temperature over 37.5 I would have to monitor him very carefully. If the temperature was over 38 phone the ward for advice and over 38.5 go straight to hospital.
Billy is most susceptible to infection if he is neutropenic. This is when his neutrophil count is below .75 which effectively means he has no immune system which obviously means he can pick up everything. What was worse was Billy hadn't had chicken pox which was very serious to immniosupressed patients.
Now you can probably see why I was so scared. Billy had always been a little toughie that was hardly ever ill and now this! I had been told that some children go through treatment without hardly ever getting neutropenic and ending up ill but this was very very rare. I had visions of Billy not being able to have any kind if life but being wrapped up in cotton wool and in a face mask. Would this be the only way to keep him safe and sound?
Billy was in a nursery year at his school and was missing his friends lots, the hospital said one of the best things would be to get him home and get him back into a routine. To me this seemed mad, all I wanted to do was make him safe, keep him away from everything and make sure he wasn't ill. My child had cancer why would I want him any more ill?
So after a few chats with the doctors and nurses we decided it was best if we stayed in another night just to relay my fears and give me another night to get used to all the new routines. Another part of me was petrified that I would get it wrong and make Billy seriously ill. It was one hell of a responsibility and was I up to it? What if I got it wrong? What if I measured the drugs wrong or if Billy refused them?
Its a lot to take in, life was going to be so so different, Billy was scared but coping, I was totally petrified...
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