Friday, August 19, 2016

A tough end to an even tougher week

Sam had a great half day at school yesterday, blood tests in the community and hanging at home. Last night I hooked him up to his two pumps, but he didn't settle well.  I was sleeping in with him and every 5 mins he would call out for me to help him sit up as he felt sick.  He would gag and wretch, but due to his stomach being on free drainage, fluids would only escape into this bag.  He would lie down again and I would hope he would fall asleep and all would be well - this went on until around 3.30pm, when I gave up and changed his feeds.  I decreased his milk feed from 94 ml - 60 ml/hr and increased his peadialyte from 65 ml to 95 mls/hr.  I was concerned he would be getting dehydrated and I hoped this would help his stomach to settle a little.   It did.  He would sleep for around 20 - 30 mins at a time.  

During the night his ilieostomy outputs (poo) came to around 1 litre.  Yes, I have to measure his poo. Anything above 800 ml in a 24 hour period was concerning - Sam had lost 1 litre in half that time.  It was very clear that managing his fluids at home, was just not possible - for some reason his body was not coping with the monogen feed and as I had reduced it to help him sleep/stop vomiting, he only got 2/3rds of his daily nutritional/calorie needs, as well as losing way too many fluids.

At 9.30am we arrived at Starship and so started the sad realisation that the past weeks of trying to make Sam tick with the many changes we had implemented, had in essence failed. Tonight he is asleep and has started a 24 hr regime of feeds, but if he doesn't tolerate this, he will be back on TPN/IVN tomorrow.  This is hugely disappointing.  I am really sad for him. Since he came off TPN 6 months ago his weight has stayed the same and not increased, but he seemed okay.  With the challenges of the past 8 weeks, he is skinnier than ever and he needs calories to give him the energy to deal with his compromised lungs and other issues.  There were whispers today of possible surgery to try to fix the chylo-thorax issue, which plagued him last admission - it was hoped the monogen feeds could have given him a 6 week grace period to help his body find an equilibrium again, but his body is frail and we can't wait.

Sam loved seeing his friends at school yesterday - but sadly I don't think he will be back for a while, as he has a few significant hurdles to cross before then.  The medical teams are disappointed, as they have worked so hard to come up with non surgical and non TPN solutions, but we may have come to the end of the road with those.

So tonight my heart grieves for Sam. He has endured much so bravely, but now he must endure even more.  I was hoping he could experience a life without a 'line' and to be able to swim next summer.  I was hoping he could be a part of our family at home.  Sadly our family is very fragmented.

When I explained the above scenario to the girls tonight, one shouted out, 'Oh stink, we just got him home... I want him home!'.  The other said, 'It just doesn't seem fair....'

Yep, I have to agree to both.  Life is so not fair.  But we can not give up and have to make good choices for today.  I am exhausted after a night with only a couple of hours of sleep and getting him admitted today.  Right now I just need sleep and I hope tomorrow is a better day. 


Anonymous said...

Oh Shirley, so much love and prayers to you all. Juliette xxx

Unknown said...

Praying for a great sleep for you Shirley, and for Sam. Hopeful for the new plan to be the needed answer. Much love to you all. Hilary

Anonymous said...

Sending all our thoughts, love and prayers to you all - I am sure they will work up a new plan and in time he will be without the line. Everything seems so much worse with tiredness, stress and the unknown - we know that only too well! Take care all of you. Paul, Gemma, Abbie, Lewis and Jacob

Anonymous said...

Truly heart-broken for you all Shirley. What a blow. Lots of love and praying for you all. Karen xx