Postcards from North Melbourne (Day +26)

It's been a few days now since we've updated the blog. Since leaving the hospital we've been readjusting to life with all three of us back to living under the same roof, albeit not at home but in a smallish studio apartment across the road from the hospital. Max has been coping very well with life on the 'outside' and is enjoying the freedom of not being permanently attached to an IV pole. He's spent most of his time cooped up in the apartment but yesterday we did manage to go for a couple of walks. It's a relief that Max does not put up a fuss when we put on the face mask that he is required to wear anytime we leave the house. He has already worked out that it is a necessity, asking when the prospect of going for a walk was raised "Where's Max's mask? I need to put a mask on". And just like a Japanese public transport commuter he seems quite happy to wear it and hasn't, apart from the first time he wore it, tried to rip it off. 

On Saturday, Max made his first trip back to the hospital as an outpatient, this time just for some blood tests. For the foreseeable future he will be required to have blood tests every two to three days to make sure everything is tracking well. The results were ok and indicated that his platelet levels were holding well so there was no need for a transfusion. As he is eating quite well and, with a little help from left over easter eggs, is taking his medications orally without too much trouble, we decided to have his nasogastric tube (Mr Nose) removed. Apart from being sticky taped to his faced, the tube is not attached to anything; it simply dangles down from the back of the nose to the stomach, so it was quite easy to remove. Once the nurse had removed the supporting tape from Max's cheek she pulled on the tube like she was pulling down blinds and it was out in about three seconds. A few tears were shed but it was nice to see Max's unblemished face again. It was also a lovely feeling for all three of us to walk out of the ward hand in hand after being there for little more than an hour. Needless to say we prefer one hour visits to five week visits. We're back again on Monday for some more blood tests and an appointment with Doctor T.

Speaking of medications, Bee and I nearly had a nervous breakdown on Max's first night out of hospital when preparing what seemed like half a pharmacy's worth of medications for him to take (actually I should say that although Max is on eight different medications to be taken between twice and four times a day, we were told by the oncology pharmacist that this regime was pretty light on compared to some of the other kids that come through the ward). We were overwhelmed by just how much information we needed to recall and by how fiddly it was to ensure that we drew the correct doses from the bottle; all bar one are in liquid form. With no nurse to help us it was a pretty scary experience. Fast forward three days and Bee has well and truly become the med prepping master. Once the alarm rings, within a couple of minutes Bee has all the doses drawn and lined up ready to go. I have taken on the roles of sourcing the chocolate bribe and patient wrangler. We make a pretty good team.

Finally, a poo update. We know some of you have been following Max's movements very closely. Well, you will be thrilled to know that yesterday Max, for the very first time, demanded that his nappy be removed and that he be seated on the toilet where, of his own accord, he expelled three of the most glorious looking logs you're ever likely to see. Bravo Maxwell!


Depending on how the appointment goes tomorrow, we are looking to check out from the apartment for home sometime mid week. We all cannot wait.





The Numbers:


White cell count: 6.2 (6.0-17.0)
Neutrophils:  4.07 (1.5-8.5)
Haemoglobin: 118 (110-140) *
Platelets: 28 (150-400) *


* transfusions are topping these levels up at the moment, so they are not a true indication of where he is at.


cheers,


Tim