Monday, March 6, 2017

It has been a better week!

Sam has been at school and the uti has cleared up - he has been off meds for a week.  Today he is complaining a little of pain in the groin area and been requesting more bladder washouts, so I am hoping and praying we can keep bugs at bay.  Every 2 weeks I alternate medicines to hopefully trick the bacteria - for 2 weeks Sam takes a drug that makes his urine more alkaline and then the next 2 weeks it's something to make the urine more acidic - the verdict is out if it actually works, but we are up for anything if it means he has less infections.  It does mean that I have to find the medicine grinder and grind a med up and I can't find it right now... a rummage in the medicine cabinet is about to ensue!

This week Sam has two hospital appointments.  The first is tomorrow at 2.30 pm with the orthopaedic team.  He hasn't been on their radar before, but we have been referred as Sam has quite a wide gait and his hip movement is quite limited.  This is exploratory to see if there is something that could be tweaked to improve his movement and to see if there is actually some physiological issue that could be corrected.  This clinic is at Super Clinic in Manukau - not Starship.  I like going to this clinic as there are masses of free car parks and I don't have to fight with city traffic.

On Wednesday Ange, Sam and I will venture to Middlemore Hospital to take a tour of the children's wards.  This hospital is in our catchment area (around 25 mins drive away) but we have never been admitted here.  Should Sam have a simple medical need (hmmm, that would be lovely, but I'm not convinced this plan is going to be in Sams best clinical interest), he is to be admitted here first.  So this visit is to familiarise ourselves with the ward, meet the staff and have a chat re his specific needs, meet the play specialist and other medical people so that Sam can be relaxed and familiar should an admission happen.  I think it's an appropriate move, and as NZ has a free health system (which I'm so grateful for), it doesn't mean we have much say in treatment, or the luxury of choice.  I am thankful for common sense kind practitioners who are open to discussing the finer points of having Sams care across two hospitals and Health Boards.... let's say the discussions are robust and lively between us all and this 'Mumma Bear' is not going to let her cub out into the unknown with out a systems check etc.

Sam and I share a really massive room - it's quite long and would probably have been the lounge in the original house.  He is at one end with his pumps and stacks of medical gear, and I am in the other end with french doors/dividers in between.  It works well as I am far enough away from him that I don't hear the whirring of the pumps, but close enough for when he shouts out needing attention in the night.  Last night he woke me 3 times (about the norm).  Once to say his ilieostomy bag was full and could I empty it, once to say something had leaked and could I sort it (a feeding tube had leaked) and the final time was just to tell me he loved me!  It was so cute....'Mum, Mum, ..... wake up....', 'hmmm, yeah, what is it.....', 'Mum...... I really love you'.... and then he went back to sleep!  I need to work on appropriate timing for him, but it is lovely to hear it even if at 4 in the morning!

A very exciting development is happening on Thursday night - my new 'Night Watch' is starting. Sam has been re-assessed and he has been given funding for 1 night a week to have someone be with him overnight.  This angelic being (anyone that gives me sleep automatically jumps to Angelic Status!) will rock up Thursday around 10 pm and will be in with Sam til 6am.   This angel will deal to Sams pumps/feeds/meds/every whim and I shall sleep on the couch in the lounge and hopefully ignore them both!.  I am very grateful to have found a lovely local third year nursing student, whom Sam already knows and is comfortable with.  So look out Fridays -like an aging old caterpillar I may stumble out of my cocoon having had some beauty sleep.  I doubt I will look any different, but the view of the world is definitely better with uninterrupted sleep mixed in!


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