Another day, another hospital stay

This was the weekend in Leo's chemo cycle where he is most susceptible to infection - day 8 onwards on any cycle until about day 15/16, his white cell count in his blood drops as a result of the IVA chemo protocol and so we've pretty much had him quarantined all weekend - no visitors and no shopping or trips to interesting places like the zoo, despite the beautiful summer weather!

But that doesn't stop his Hickmann line becoming infected and needing another visit to Bristol Children's Hospital and their A&E department. I gave the kid's oncology ward a call for advice about his chest looking sore around the line site and that he'd stopped letting me pick him from under his arms. Leo's not had a temperature, which we have checked every half-hour even throughout Saturday night, but as Sunday went on, he became more and more tired, has rarely eaten or drunk any milk or water this weekend and his site was becoming more sore.

I said to Leo we perhaps should go to the hospital to which he replied, "yes, I think we should Mummy!" He's three..and whilst he may not be able to completely verbalise his feelings, he is certainly learning very quickly and perhaps having to mature before his time.

The hospital have been amazing yet again. As soon as we arrived in A&E, it was standing room only but because Leo could very easily pick up a bug, we kept him away from the children and their parents, as well as all the toys which he likes to play with! The receptionist knew who he was as soon as we gave her his name and immediately (but without anxiety) took us to a room in the main treatment part of the A&E department. This is because he could so easily pick up any bug which if you have a room full of poorly children waiting to see the A&E docs, he could easily do. We met some lovely nurses who checked Leo's pulse, temp, blood pressure and blood oxygen levels, and Leo was lovely with them, even when they took blood.

And then within 10 minutes, the oncology registrar came to see him and Leo was not so nice to him! Leo seems to be much more charming with the ladies!!! But then considering four weeks ago he was kicking and spitting at anyone who came near him, his behaviour and anxiety about being in hospital and being prodded has decreased significantly.

Next came a trip up to Ward 34 which is the oncology ward. Very quickly the nurses there had him settled and giving him IV antibiotics over 2 hours and we hope the redness and pus around the line site will go down overnight otherwise the doctors will take it out. This would then mean Leo needing another short operation under general anaesthetic to put in another which will be a shame as the lines can last up to and over a year.

It's the second time in three weeks Leo's been taken into hospital for a line infection. Last time he needed a blood transfusion also but I think he's actually more well this time, give his lack of high temp so fingers crossed.

The easy parts are the days you can plan for such as the IVA weekends every 3 weeks and then Vinc injection every Friday, with blood tests every few weeks etc. But it's days like today when as a parent you feel completely out of control. PJ and I have been trying to get our heads around whether he should go out and find a job in order for us to not only bring in some cash but also to try and gain a sense of normality. But then events like this happen which throw us for six and then we can only think that Leo needs us, both of us and we need each other right now. There will come a point where he or I will go and ensure we do what needs to be done, but until then, we're going to try to stay together and care for Leo together for as long as we can.

Let's see what tomorrow brings...