The boy bounces back

Last Thursday night, 14 November Matt was happy as Larry, sat in the lounge having dinner with all his family.  However that night he didn't really settle and then around 0400 he got the hiccups which got so bad that he vomitted.  We cleaned him up and Jim moved him up the bed to get him comfy, I gave him his anti nausea drugs and he dozed for a couple of hours.  The hiccups came back so I gave him his pills in the hope that the drugs would settle him and the anti nausea drug would kick in however he was sick, and then sick again.

We called Karen the community nurse and she came out to see us.  She indicated that Matt's body was starting to shut down - he was rejecting the liquids and pills and that he probably didn't need to eat or drink anymore.  That was a big shock as less than 24 hours earlier Matt had been sitting out in the lounge with us, enjoying his dinner and time with his family.  

Karen was brilliant.  She arranged for the community nurses to come out, set up a syringe driver for his meds, diamorphine, midazolam, hyoscine and cyclizine and an injection of dexamethazone, his steroids.  She also filled in all the paper work to request carers and Marie Curie nurses so we could keep Matt at home with us.

The district nurses didn't come until 1600 and by that stage Matt was feeling and looking really poorly. They set the syringe driver up but Matt continued to vomit while the nurses were here.  Around 1800 Aunty Brenda and Uncle Nick turned up, then Jim & Debbie followed by my sister and her family.  We stayed up all night with Matt, taking it in turns to sit with him.  Saturday morning we saw an improvement on Friday and he started sipping water from a toothbrush.

Saturday the house was full to bursting with friends, family and dogs.  Matt had a constant stream of visitors so there was little chance for him to rest and relax.  That night the hiccups returned and he became quite agitated, wanting to get out of bed to go to the toilet and frustrated at not being able to. Finally around 0400  we decided to call the doctor out to see if he could give him something to settle him.  Injection duly given but without the desired affect, Matt was still wired!  

On Sunday Matt was surrounded by yet more loved ones and he kept on going, getting slightly stronger and perkier.  There were moments when he would weaken but then he'd suddenly pull through, crack a joke, pull a face or do something to make us laugh and the boy would be ready to be entertained again.  Sunday night was another all nighter for Matt.  No doctor, although on reflection we probably should have called the doc out as he was agitated all night, wanting to get out of bed and fidgeting.  

Monday morning Karen came by again and said we could start giving Matt little bits of food if he felt like it - ice cream, custard, soup.  We also had calls from Greigcare and Marie Curie offering help to us. 

Greigcare come out twice a day and primp and prime Matt - give him a bath, a shave, change his bed sheets and t shirt.  Never before has the boy been so well looked after!  The ladies are great and Matt has a good giggle with them.

Of an evening we have a Marie Curie nurse or healthcare assistant stay with Matt from 2200 - 0630.  We're all then able to get some sleep knowing that Matt's not alone.  That's been such a relief.  At first I didn't think I'd be able to sleep but it doesn't take me long to fall asleep.  I'm still waking every 4 hours though  I'm so used to Matt waking every 2 - 4 hours, it's become habit now.  Matt's had to have injections to stop the agitation and pain each evening.  After his sleep on Tuesday night, Matt had an amazing day yesterday.  He was perky, talkative, eating ice cream and he even had a few sips of wine and a bowl of custard!  The boy just keeps bouncing back.


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