Monday, 18 May 2009


I have been really slack in the last week blogging. In fact I have spent the last week trying hard to catch up with my life. This has been leaving me exhausted.

Last Wednesday, Hayden, had to go into hospital for a small piece of surgery. His port a cath had failed and he needs this for monthly blood tests and when he gets sick and dehydrated (or worse) it is useful for IV fluids. I blogged about this here.

Anyway this is what a day in hospital with Hayden looks like.

I have to get up for the usual 0130 hours medication run and turn off his night feed as well as a second night time nappy change. This night I need to also hook Hayden to some additional water. All this fluid goes through his mickey button.

At 0530 hours Hayden becomes nil by mouth so I have to get up again and turn the water off and give him his anti seizure medication. I go back to bed only to rise at 0630 hours to dress and get Hayden up and out the door 15 minutes later.

At 0730 hours we are at Starship with Hayden now beginning to look very thirsty, in fact dehydrating before my eyes. He has no Rubifen (calm me down drug) in his system so he is overly active and wanting to be here there and everywhere. I feel after being at the hospital for 30 minutes we have been there hours.

Fortunately there is a very small cart that Hayden loves to sit him which did keep him somewhat contained but I was still walking about, around the ward and up and down the corridors.

Here he is looking thirsty.

Hayden is the first up on the list which is great because he has still has had no liquids and it is 0815 hours and thirst is really taking over. Now I am trying to think ahead and not go near fish tanks and toilet doors in fact anywhere that water can be found. Hayden needs IV fluid but the port a cath is not work so IV line needs to go in and that is not easily done with a wiggling and protesting child. They, the power that are, decided to wait before putting the IV line so he is sedated and still. More waiting and a very thirsty Hayden.

The surgery is only about 30 minutes and the device is replaced.

Here is where I wait out in the central space at Starship.

Hayden wakes and is still very groggy. Got the intoxicated walk going on. He is very grumpy and has a rude mouth to put up with as well. He tell me he is thirsty but wont drink. He has been given anti nausea drugs to help as he gets bad nausea after a sedative so there is no reason for him not to drink. Luckily Hayden was given 250mls bolus fluids and is not too far behind as far as the liquids go. I put up with this behaviour for about 1.5 hours. Finally he is able to walk in a straight line and is less volatile in behaviour.

Here is Hayden just after surgery.

His surgery site

Talking to Dad on the phone after surgery.

I have to say that I am past the phase of being embarrassed by his behaviour. There is nothing I can do about it and all I can see are nurses feeling sorry for me and trying to help and parents of other patients looking sideways at me. If only other parents knew that for 5 days back in 2006 Hayden's life was hanging delicately in the balance and it is a miracle that he is very with us today.

By 1300 hours we are back home and he is feeling sore and sorry for himself and still behaving badly. At least his port a cath is working and this Wednesday we get to test it to see just how well. Yes that blood test still needs doing. It requires two nurses and me to hold him down and get the blood out.

Fingers crossed all is not too hard.


Melissa said...

Tam it must be so hard having to do all this. Hopefully his port works well from now on.

Anonymous said...

I suppose all I can add is that I'm glad you pulled it off, without added dramas, to what you were expecting. I really feel for you Tamara, and your ability to keep going, and know that you just have to. Good luck to your family, and hope that it is a while before this has to be repeated.