Saturday, March 18, 2017

CT Scan

Yesterday Sam was a superstar!  He had a CT Scan appointment at Middlemore Hospital - the orthopaedic Dr had ordered it, as they want to see if his unusual gait/poor hip rotation is due to a bone anomaly or if it is a soft tissue issue. The Dr told me that if it is a soft tissue issue, rigorous and ongoing physio work can help with that.  I dared to ask what was the plan if it showed that it wasn't a soft tissue issue?  At this point I think it's fair to let you in on a hospital joke that is whispered along the corridors by parents and medics alike.  I was never good at jokes and I forget most of it, but the punchline was along the lines of 'Surgeons and Anaethetists relate best to unconscious people'.  So with that in mind, I will tell you his response to my question.  Without changing his manner, tone of voice etc he said in a very steady calm voice, 'oh it's a relatively easy fix,, we just break both femurs, insert metal rods.......' and I didn't actually hear the rest as I was so aghast at the statement he had casually deposited in my lap!  I think I muttered something about let's just hope it's soft tissue then and not make any plans until we see what the CT Scan reveals.

So yesterday Sam and I went in to the room with the giant donut - Sam was very verbal in the fact that he was scared.  It is a big machine and also in a room that is very 'hospital'.  I told him 2 things - that Uncle Pete can do this kind of thing and he would be so proud of Sam if he could do it too and we could call him after the scan and they could compare notes!  This settled him and he allowed the guy to tape his feet and legs together.  Then they lay the blanket over him and with giant velcro straps they tied him to the bed.  This was another point he was screaming and scared and I went delivered  my second statement/blackmail here -  'if you are really good and lie still we will go to the shop on the way home and you can buy a new car!  Well that worked a treat.  I stayed in the room with him and he had a few verbal wobbles as the machine started whirring and then again as the bed moved in and out of the donut... but mostly he was absolutely brilliant. Trusty Bee was at his side and I chatted and sang to him the whole time.  7 minutes he lay perfectly still - I was so impressed with him.  This was the first time he has done something like this without anaestetic.  As soon as it was over he was of course reminding me of my 2 promises and I think he reminded me about 32 times between the end of the scan and actually stopping at the shop to buy the car.  My memory is getting bad as I get older, but Sam was taking no chances!

On Wednesday we were in Starship for an hour with a child psychologist.  He will be having 5 sessions over the next 5 weeks for 1 hour at a time.  He has one-on-one with his new friend and they play and chat and she assesses how he is doing.  This programme is often done with children at this age who have lived with chronic health issues. Sam has been vocalising more and more how he wants to 'rip out my tubes' and 'he hates his mitrofonoff' etc.  So it will be good to hear her feedback after the sessions to see what we can do to help him cope with his challenges.  As always the physical challenges are significant, but things of the heart are harder to quantify and treat and definitely more significant and impacting on his life at his age/stage.

Hsi UTI  has cleared (yay!), but he is sounding a bit chesty and sneezing a bit, so am making sure we are doing his chest physio twice a day and keeping a tabs on what bugs are at school.

I leave you with a photo of him with his new AA membership card - he was telling his Aunty Elaine all about it,.... if only she could have seen down the phone! I know there is skype, but we were just using a landline phone - gosh, feels very last century.....

Thanks for keeping in touch with the little man!

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!