Round Two, two weeks in......(Day +47)

I had a rough night on Thursday.....but surprise surprise, not due to the act of Max deficating.

1am - Max wet through, drenching his clothes and requiring a bed sheet change (He had been on increased IV fluids from 6pm - 12am due to his 'back door' fluid losses, so, although I was aware that he would be weeing a lot, I stupidly didn't think to check his nappy.
2am - same as above.....I know!.....I should have used the Sumo sized nappies.
3am - nurses were checking his blood pressure, but were having difficulty getting a good reading..it was extremely high. He also had rather low pulse rate (around 50bpm).
4am - I heard a male voice in the room trying to wake Max up. It was the night Dr who had been asked by the nurses to check on Max due to his high blood pressure and low heart rate readings. He wanted to check on Max to make sure he could be woken up - once awake he decided to shine bright lights in Max's eyes etc etc....all seemed ok....so I went back to sleep.....
4.30am - An ECG had been ordered. Once again Max had to be woken to stick a number of probes to his chest. Naturally the machine wasn't working so it had to be redone three times. This took around 45 minutes. On inspection by the Dr, everything looked fine.
5.30am - regular lot of bloods were taken from 'Mr Hose'
6am - Max wanted me to get into bed with him and rub his tummy.....we both fell asleep until 8am at which time Max wanted his breakfast....so the day began........

Over the last few weeks Max has been progressively loosing more and more weight. He has lost around 20% of his total body weight through a combination of diarrhoea and lack of movement - his previously beautiful muscular legs have dwindled down to little chicken legs with nobbly knees. It is really sad to see him like this, he doesn't want to move from his bed - it's a stuggle to even get him sitting up in bed for too long. He has not been himself for a number of weeks now, hasn't smiled in a long time - his spark has gone. I'm sure (from my own Crohn's experience!) that his continual bowel actions, stomach cramps and pain has worn him out!

On the dietitians advise, this morning I thought I'd try giving Max a lactose-free protien chocolate shake in the hope that this would build up his strength and weight.............not a good idea...............it certainly came out quicker than it went in!......no chocolate mousse references for this episode....more like a burst water mains!

As a result, TPN (intravenous feeds) is on the agenda to start tomorrow or Monday. Yes, this means we will be in hospital for a while more. Surprisingly, Tim and I are happy that the TPN is actually happening. It's quite clear that Max is not absorbing any of the nutrients of the food he is eating, so at least this way the sustainance he needs will be delivered straight into his veins and give his gut a complete rest.

That's all the big news for now.......we are hanging in there.....we just want our cheeky little boy back and will do whatever we need to do so this happens!

Thank you to:

• Gramps and Pop for tidying up our, I'm certain, weed infested garden.
• Gramps and Granny Pat for the Thomas trains and track - such a great choice!!
• Aunty Jo, Granny Pat, Aunty Juda, Aunty Jill for the beautiful PJ's for me and the Dora books for Max.
• Cus for the wonderful care package for Tim and I (it will last us a while), and the box of goodies for Max, especially the 'Hawthorn' car which he has decided to sleep with for the past couple of nights!