Friday, August 5, 2016

Week 6 Update

It has been a huge week for Sam.

Yesterday Francis and I met with the many teams and heard their plan.  As we listened we were so aware of how many hours of thought and skill had gone in to Sams plan and how much care and kindness is sitting around that table... all there to help Sam have the best quality of life he can.  It is truly something lovely to be a part of and witness, yet it was a meeting I was dreading and fearing as Sam is at the forefront of medical knowledge/advances....and I feared walking in and seeing a member of the Palliative Care team ... but thankfully they weren't in on the discussions.

My fears were based on nothing - as usually is the case.  When will I learn that there truly is no point worrying about anything, as it achieves nothing!

The plan started in full swing today.  Today Sam had his chest drain removed. This has been in situ for around 4 weeks so he required medaz. to help with the pain and removal of this.  2 sutures removed and out it came.  We then had a 'happy drunk' for a bit whilst the drugs wore off. I was at home with the girls, but I phoned nana and got to chuckle as Sam slurred and waffled away - he is funny when he is sober, but very funny when under the influence!

Now the drain is out and nothing else in his current care regime will change.  He will be watched and monitored for the next 5-7 days.  He will then have an xray to check the levels of fluid in the chest cavity.  If the teams are happy, they will then remove/change his antibiotics... and we will wait and see for another few days, then they will change a medicine he is currently on.... and wait and see.

They want to do it slowly and only one thing at a time, so it is obvious what the culprit is if something goes wrong.  We are happy with the plan and rationale, but it does mean at least another 2-4 weeks in, if all goes well!  

If they are happy with Sam after these 3 big changes we will be able to bring him home on the current nutrition he is on, which he will need to be on for another couple of months.  Unfortunately this feed is on a 20 hour pump cycle, so we will have to get creative about a safe backpack option so he can get to school.

1.125 cm tall!

There are plenty of things Sam can't do - he can't eat (yet!), he can't run and play, he can't skip, he can't climb a tree.  But there are so many things he can do.  He can draw people into his room like a magnet! He can make people feel like a million dollars as he remembers the details of their lives and asks them questions, He can engage with people of all ages and have them laughing.  He is such a joy and he constantly reminds me to not worry about the things I can't do, but to just do what I can do as best I can.

 We are so thankful for Angela, our trusty carer who has been with us over the past 6 years.  She continues to be with him in the hospital, making sure his education continues.

Sam has had so many visitors this past week from school.  Oh my goodness, the whole ward knew they were coming (he told everyone!) and you could here his squeals of delight and the kids playing together - truly heart warming.  I wasn't organised enough to email the childrens' parents to ask if their cute photos could be put online, but you just have to take my word for it. 

Yesterday his buddy Jett went down with Sam to the xray department.  Sam and Jett on the bed. Sam was so happy to have a companion.

We have been so touched by the kindness of Sams school community,  On Monday a knock on our door found a school Mum laden with meals for the week.  Sams class has rallied around and organised meals, gifts, cards and even a coffee fund! So practical and kind and it made me cry - happy tears!  Then as Hannah, Ry, Jett and their parents visited over the week,  they came with cards from class mates.  Such care and concern for us is so encouraging and fabulous and appreciated. Simple acts of kindness, truly touched us.  It is a hassle getting into the city, parking is a nightmare and expensive and Starship is a maze... so we totally appreciate the effort.  Thank you.

So the coming weeks/month will be a juggle as I need time with Sam and I need time with my girls.  We will do what we always do - get organised and plan, and when it all turns to custard because something unexpected happens, we re group and re plan.  Francis has been in with Sam most of this week ('bro-time'), and Nana has also done 2 nights, but I hope to get a couple a nights a week in with Sam - I miss him and he misses me... but he adores his Dad too.  Just too hard being in 2 places at once!

I am looking forward to sleeping at home tonight and popping in to see Sam after the girls netball is over. 

I do hope all you readers get to enjoy your weekend with your family - we have found the location doesn't matter so much, just being together is what is important.  Love the people dear to you and thank you for your care and love for us.

X Shirl

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