Tuesday, August 23, 2016

A rough 24 hours for Sam

Last night Sams monogen feed concentration was increased... and Sams system didn't like it.  He had a rough night of wretching and feeling awful.

Watching Sam wander slowly about the ward corridor it is evident he is lacking energy and is the thinnest he has been in a year.

After discussing things with the team, and a phone call with Sams main surgeon, it as been decided to pencil Sam in for surgery on Monday 5 September - this is the surgery that the last admission was trying to avoid, but in light of how he is doing, actually it's time to admit defeat and do it.  This surgery is to go in to his chest/neck (or wherever) to try to patch up the leak, that has been the source of the fluid in his chest cavity.

And in light of an upcoming surgery, they have decided Sam needs fattening up, so tonight he was hooked back up to a bag of IVN (Intravenous Nutrition, previously called TPN).  So he now is having nutrition directly into his veins.  Tonight they will halve the monogen feed going in to his gut, as he isn't reliant on it, and to give him a break.  When we told Sam he was going back on IVN, he was so excited and said, 'YAY' and gave me a big hug!  When the medical teams, dieticians and us are all slightly flat having seen Sam not respond to treatment, Sam is so delighted to be back on something that is like a long lost friend - IVN has been his nightly friend, that quietly fed him as he slept.... and he understands this part of his life and medicine, where as the whole 'chylo-thorax' and chest stuff is new and uncertain.  IVN will be connected to the PICC line in his arm.

The teams will see how he goes over the next few days, but the plan is that hopefully next week they can get Sam off pumps for between 4 - 6 hours, which means he could get to school for a few hours each day.  He misses his friends and schooling so much and this would help in getting him through a week of hospital.

Today Sam had a chest xray - he is so brave and courageous - stands and does what he is told (well he could do it without instructions!).

Sam had a special visitor today.  Our dear friends know of Sams love for all things 'car'.  So a while back they gave him his very own AA mechanics bag.... and each time they see him some new tool or device seems to be added.  One such time saw him with his own little hi-viz jacket being added.  Well today he had to don his jacket whilst Uncle Greg gave him the next kit installment - jumper leads! They had to actually make them, and it was very cute to see Sam and Greg working it out.  Bee can be seen watching on from the comfort of the AA bag.  Was very fun to see Sam busy at work and then he pottered for a bit with his cars and kit..... such simple things, but am always so conscious that people give up their time, drive hours to see him, bringing him lovely things to help him get through his long days in hospital - does make my heart glad... and brings a huge smile to Sams face.

I leave you with Sams day in photo form.  Sam loves visitors, but please do flick me a text or make contact if you are wanting to come up - would hate for you to go to all that effort and he is in an MRI for 2 hours!

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