Day 400

Ethan will be coming home tomorrow after a very ordinary admission. I have done nothing but complain and whine for the last 2 weeks. We have had a lot of issues regarding bed time. I think he waves us of happily so he can get up and play. He has the staff wrapped around his little finger and gets away with murder even at midnight! We have also had major issues with his diet. Ethan is on a high calorie, thickened fluid diet as he has weight issues and aspiration issues so when the wrong meals come that have skinny everything and drinks that aren't thickened I get pretty pissed. I had nurses, food monitors, dieticians, PSA's, doctors and the charge nurse all involved in my anger!! Not sure if I'll ever get reemployed there!!! These issues come at a time when Ethan is at an all time low with his weight to age ratio. We have strict guidelines to follow to facilitate weight gain. If it doesn't go our way he will need to have a nasogastric tube inserted and supplements given either continuously overnight or top up feeds during the day.

Tomorrow is Ethan's 400th inpatient day. No wonder he is so confident there! Just as important it is Erin and Adele's 400th day too. They have had a horrible 2 weeks and both of them are out of sorts. I have warned them about Ethans weight. Adele is not too fussed, knows about the tube, has seen photos of Ethan with one from chemo days but is pretty laid back. Ez on the other hand is terrified. She can remember seeing it in his nose and out is mouth during episodes of vomiting after chemo, and me sitting on him to put it back in etc. Hopefully we can get him to eat lots of fatty stuff and it's not needed.

August Ceftriaxone

Ethan was admitted to Monash last Monday for a chest tune up. This includes the usual IV antibiotics and physio. We were hoping it would be for a week and we would be home today but we are now looking at discharge on Friday. He settled in well and is running the place in true Ethan style. He is very comfortable there. He gives all the staff a high 5 goodnight and waves us off happily.

The IV came out today and had to be resited. He rode the bike into the treatment room, told the doctor how and where he would like the IV inserted and watched to make sure he was doing it properly. Not many 6 year olds would do that! He has also started doing his own medication. The nurses bring it in and he takes control putting in the IV bung and pushing it. He told me the other day he was going to be a nurse!! I'm not too sure what happened to driving the Ghan......

The physiotherapist has been using the vest during physio with good results. This takes some pressure of him when his heart doesn't allow him to participate.

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