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Rory Gardiner's Webpage

09, Sep, 2009

Wednesday 9th September 2009


 

Rory is back on ward 27b and I am very relieved he is looking better this morning.  Yesterday was a nightmare.  On Monday night I managed to get some Pedialyte into his stomach before I connected him to the feeding pump for his milkshake.  Rory managed to sleep for a couple of hours but was awake from 9.30-11.30pm with a sore stomach.  He was upset and restless.  Eventually he fell asleep but was awake at 3am for the loo.  He didn't go back to sleep after this.  When I disconnected his feed at 6.30am he had a large vomit and went back to the toilet.  He was feeling pretty unwell.  I gave him his GCSF and headed up to clinic.  I was told his poo sample tested negative for a virus, and to go back to RM House and see how he was for the day.  We called in to see Rachel for a physio session on our way back to RM House but he couldn't complete it, lasting only a few minutes.  We got back to RM House I gave him some Paedialyte and pamol and he vomited it back up and fell asleep.  I let him sleep for an hour then took him back to clinic.  He was debilitated and absolutely miserable.  He said to me for the first time since this all began "I can't take it anymore mum". 

I have struggled over the last few days to get him to communicate with words.  When it all gets too much Rory stops speaks, and stops crying.  He moans on and off almost continuously.  This is equally frightening and frustrating as I don't know what's wrong, so can't help him.  We got back to clinic at 11.30am and the Nurse started Rory on iv fluids and did some obs.  At 2pm the Dr came and examined him, and they increased his fluids to 70ml/hr.  Rory had a very tender stomach which the Dr was concerned about and they will keep an eye on.  I collected a second sample when he went to the toilet mid-afternoon, and he vomited again late afternoon but was virtually empty.  The vomiting brought on a large bleeding nose which seemed to take forever to clot which freaks me out.  Rory then received a platelet transfusion as his platelets were low. 

Rory was finally admitted onto the ward at 6.15pm, after we had spent almost 7 hours in a room the size of a cubicle.  The ward had been full so we had to wait for space, and extra nurses.  Rory was given pain relief, and then he fell asleep.  I'm not sure how much pain relief they gave him but last night he was talking in his sleep which he never does.  A couple of times he sat up, looked around and started a conversation with me.  I couldn't tell if he was awake or asleep.  He has also started sleeping with his eyes half closed. 

After a night of iv fluids and more substantial sleep (only 3 get ups) he is more alert this morning, and not in pain.  I really have to admire Rory's courage and endurance.  I know I only feel a fraction as exhausted as he does, yet he keeps on going, with incredibly little anger, complaint, or pity.  It is what gets me up the flights of steps to the 7th floor every morning.  We will not give up.  Rory is sitting up in bed beside me building pirate lego.  He has had a blood test and his white blood count is less than 0.1 (basically can't go any lower).  He now weighs 22.85kg, 350 grams less than on Friday.  He didn't receive his milkshake last night.  I don't think he could have tolerated it.  I haven't seen the Drs yet but I guess the priority will be to try and determine what is causing the upset, how to manage it, and how to give him sufficient nutrition. 

Happy 9th birthday Matai !!