SOMETHING FOR THE WEEKEND?

Last weekend Hubby and I were looking after the grandchildren as their parents had been invited to a wedding in London so they were going to stay overnight.  I would be staying over at their house as Jess is too big for her travel cot now and there was also the issue of the night pump, which is used to feed her slowly through the night via her gastrostomy button.

I have to admit that although I have no problem feeding Jess with her top ups during the day via her G tube and using a large syringe, I have never had to set up the night pump and I was rather apprehensive.  I was also quite worried about not hearing her in the night if she started to cough which can often lead to her being sick if the pump is not turned off for a time until the coughing subsides.  Hubby was going to have to go home to sleep as we have two dogs so I could not rely on him to wake me. I also had this nagging fear that she might wake up and pull the tube.  My worst nightmare has always been that she might one day pull out the Mickey button, we do have an emergency ‘peg’ which has to be inserted into the hole as soon as possible should this occur but the thought of having to do that fills me with dread.

Emma gave me a quick lesson on how to set the pump up and I wrote everything down too.  It needs to be connected when Jess is asleep (otherwise she would pull it out) and then turned off again at around 7.00 p.m., unless she has a coughing fit and then it has to be paused for a while.  "Don’t worry" I said "We will be fine", but inside I was thinking ‘I do hope that nothing happens tonight’.

When Jess had finally gone into a deep sleep Mr H. & I crept upstairs with the large bottle of milk to hang onto the pump and the tubes primed so that no air would be trapped inside.  Hubby is quite an expert at fitting things together so he managed to get the tubing set up on the machine without any difficulty, which was good as I was struggling to make sense of my notes!  Jess was lying on her side, which did not help as I now had to attach the G tube to her Mickey button but I managed to roll her onto her back without waking her and finally we had her attached and the pump running. 

Hubby went home and I went to bed and lay there, almost frightened to go to sleep incase Jess woke up and I did not hear her.  Earlier on I had posted on the SWAN group members page that I was looking after the girls and to wish me luck as I had not used the night pump before.  I now lay in bed looking at some of the replies.  People wishing me good luck and another person offering to help if I got stuck, just what I would have expected from them, they are like extended family.   It felt comforting to know that there were people out there (most of whom I have never met) who would be prepared to offer advice if I needed it. 

Sleep did come and the night was uneventful.  I turned the pump off at 7.00 a.m. and disconnected the G tube, Jess carried on sleeping soundly.  Not so her older sister who climbed into bed with me, wanting to watch a cartoon on TV. 

I was feeling really pleased with myself, I had overcome my fear of the dreaded night pump and had managed to get through the night without any drama.

I picked up my phone again and went back onto the Group Facebook page, feeling quite pleased with myself I had intended to post something to let the others know that I had made it through the night.  What I read made my stomach go into knots.

I may have had an uneventful night but others had not.   It would appear that quite a few SWANS were poorly that night and two in particular had been rushed into hospital after having first to be resuscitated by their parents. 

I noticed that someone had kindly added onto my last post that I was a super Nanny but I did not feel super, to be honest I felt rather ashamed.  There was I getting all puffed up about being able to deal with something as trivial as a night pump and others that night were having to resuscitate their children.  The nearest I have ever come to that was when Emma had a febrile convulsion as a two year old.  She went blue and limp and I thought she had stopped breathing, fortunately a neighbour who was a nurse was able to confirm it was a febrile convulsion and by the time the ambulance arrived Emma had come around.  It only lasted a short time but I can remember for those split seconds thinking that my little girl had died and it is a feeling that I cannot describe but have also never forgotten.  My heart went out to those families and I said silent prayers for their children.

Parents of children with disabilities (diagnosed or otherwise) have to be able to cope with the unexpected.  There is no handbook, no notes to guide them through it.  One day can be good with a trip to the park, the next their biggest nightmare with a trip to the hospital.   My Daughter asked to be taught how to insert an N.G. tube (prior to Jess’s gastrostomy) so that she could replace it when Jess pulled it out, I have always admired her for being able to put aside whatever squeamish feelings she may have had (this is the woman that used to faint as a child if she cut herself) and just get on with it.  The same with the Mickey button.  Both her and her Husband have got the night pump routine off to a fine art they have no time to worry about it or write notes they just get on with it.   So no, I am not a super Nanny at all, all of you parents out there with children who have different needs are the superheroes.  I have nothing but admiration for you. 

Please read the following blogs written by two parents who have undiagnosed children.  One describes the effect that epilepsy has on her family and the other describes the events that took place during their weekend from hell. 

 ODE TO EPILEPSY

13 OCTOBER LAST 36 HOURS 

Oh and by the way, I carefully folded the notes that I had made regarding the pump so that I could refer to them again when needed.  I left them on the sofa Sunday morning whilst I prepared breakfast, when I looked back into the lounge Jess was sitting there quietly eating them!