Saturday, July 16, 2016

Slow and steady

Sam had a great nights sleep yesterday and woke up quite a bit happier, but as soon as the physios had been at 8am and made him work hard to get his lungs working, he was exhausted again and trying to sleep.  Sleep is difficult when teams of people are flowing through your room to review you.  The surgical team were happy to remove the main urinary drain and just leave the one mitrofanoff drain in.  As soon as this was out the pain team agreed that it was time to withdraw the epidural. 

Around 12:30 I negotiated, begged, bribed and grovelled with Sam to allow us at his groin area so we could remove the dressing and drain.  I am so thankful for the medical invention called 'Remove'.  The drain came out easily.  This meant that the urine from the right kidney is now flowing into his small amended bladder and can only be drained  out through the mitrof. drain, or if that doesn't work it may leak out the normal route - his urethra.  We are really delighted that it is draining nicely out the mitrof drain and is perfectly clear, without any blood staining.  This drain is to stay in for another 2 weeks.

After several more people through the room, it was decided he needed a blood transfusion as his haemoglobin was very low.  This was subsequently given over a 4 hour period. 

At 11 pm  tonight I held him whilst the nurse took out the epidural plug in his back.  He has now fallen back to sleep.  He has a continuous morphine pump runninng and the nurse can also give him boluses of morphine if it is deemed necessary.  Sam has woken twice in pain this evening, so he has had 2 extra lots of morphine and settled again.

Surgically everyone is pleased with the progress he is making in regard to the surgical sight, healing and urinary drain.

The concerning things are the ongoing leakage of fluid from his chest drain.  As the volume isn't slowing at a desired rate, tonight he was started on a drug called Octreotide.  This is given over a 24 hour period via IV line.  Thankfully it can be given alongside morphine.  I think the plan is to keep him on this over the weekend and reassess everything on Monday.  I did hear a rumour this drug may need to be given for 1 - 3 weeks.

Currently Sam is on 2.5 litres of humidified oxygen, morphine continuously and the new drug.  He also has his chest drain and two urinary catheters draining into drainage bags. He is having his usual amount of oral feeds.  Unfortunately the change of feed to a MCT (Mono-chain triglyceride) has not brought about the desired affect of reducing the chylo fluid leaking.  It is still uncertain where it is coming from and the teams are doing what they term as 'academic exercise' to see how they can best locate it - apparently it is difficult to find, and with Sams various drains and scar tissues etc, it will be even harder.

Today was Francis' birthday, but we will celebrate it tomorrow when he will come in for the day with the girls. Normally Francis and I share the sleeping over in Starship, but on this admission Sam has been very determined that he wants me to stay - this is not a reflection on his total adoration for his Daddy, but more an indication of how poorly he is - nothing like Mum when you are sick.

Today we also had a lovely visit from friends and it was so nice for Sam and I.  It was very sweet that Sam made the comment after they had left, 'They came a long way to come and see me didn't they Mum'.  He is a sweet and clever boy - yes they did travel to see us on a grotty horrible day.... thanks guys - it meant a lot to us both.

Photos of Sam 'snap chatting' and tonight fast asleep amidst his technology.



Tomorrow the plan is to get Sam out of bed and sitting in a chair to help with his posture and to give his lungs a work out. He was xrayed in his room this afternoon and the right lung is starting to look a bit 'goopy'.  This isn't surprising considering he has had anaesthetics, pain relief and being sedentary.  We are in a very small room, so have requested a larger room (several are empty on the ward) as it is looking like our admission will be a number of further weeks, plus we just don't have room to put a chair in our current room.  Tomorrow I think we shall also have a room change.

Sam has truly had a rough few days, but he has been so remarkable in how he copes with it all.  I admire him so much.  I hope and pray that the fluids in his chest dry up  and he can breath easy again.  I wish he didn't have to struggle so much.  I hope and pray he has a pain free sleep and wakes stronger again tomorrow. 

Ok, it's late, I'm tired, Sam is asleep - 3 ingredients that make sleep possible!



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