Well, here is my nightly rambling report from Edinburgh.
Hubby was admitted onto the liver transplant / kidney ward yesterday evening and later on after i'd come back to the caravan they inserted his nasal gastric feeding tube - it was a bit of an ordeal for him as they allowed a student nurse to attempt the procedure and it caused him a lot of pain and some bleeding from his left nostril and a more experienced nurse took over and managed to successfully insert it in his right nostril. They commenced feeding him overnight slowly just to get his stomach used to it. I think tonight they are increasing the amount that is going in.
This is in addition to his daily food intake and 3 x Fresubin Supplement drinks a day to try and really get him bulked up and stop further wastage.
Fresubin supplements and the supplementary feed WILL all have the affect of putting up his blood sugars so at the same time as introducing this they have started monitoring his blood glucose levels and have started him insulin. Tomorrow they are planning to fit him with a LIBRE blood sugar monitoring device which will link with a smart phone app to allow us to monitor bloods more easily once he gets home.
He was dreading insulin injections but is tolerating the insulin pen jabs without issue and is also doing remarkably well tolerating the N/G tube - they fitted a Nasal Bridle Clip thing to his nostrils today which will help keep it in place. He can feel it at the back of his throat but the only discomfort he's had was on the insertion and fitting of tube and bridle.
We had visits today from a nurse doing a frailty assessment in which he didn't do too bad, showed that his month of physio has done some good. He had the usual tray full of blood samples taken and visits from doctors on the liver team then this afternoon we had the full team around the bed again making sure all their different aspects of care were registered and actioned so the consultant was there, junior doctors, dietician, diabetes nurse, anaesthetist etc. etc.
The rest of today was spent with me chatting through a lot of the med speak stuff as to what's going on and why and our thoughts on how tomorrows decision might go. We also had visits from dietician and diabetes team working out how we are going to get a feeding pump system at home and how we managed the discharge from hospital home bearing in mind we won't have a feeding system until we get home as our local health board operate a different machine and system than Edinburgh does.
Tomorrow we have to have a Teams Meeting/Education Session on line with the Fresenius Nurse who will talk us through the operation of the the Fresenius feeding pump system and she'll visit us at home once we are back over in Ayrshire. We will need Edinburgh to show us how we carry out PH tests on the tube to make sure it's still in the stomach and how to flush the system etc. etc. Also, consultant doesn't want him discharged until they've worked out the insulin regime which can only be confirmed once they've had chance to feed him fully over night for a couple of nights and tomorrow or over the weekend we'll get educated on the diabetes, the insulin pen, Libre monitor and more and the consultant is due to chat with us in the morning (though since she has been hubbies consultant since 2013 there isn't much history she needs to gather). Then its the MDT in the afternoon and decision time anywere between 3.30 and 6pm.
Hubby is probably being kept in over the weekend and perhaps get out on Monday and then we'll see where and what we do from there.
So, we didn't get the planned rest day today it's once again been pretty full on. I left around 4pm to beat the traffic leaving Edinburgh and it's allowed me to get back to the caravan, do some jobs, fuss the cat and pop out for a Haggis Supper - well it is Burns Night.
Och well, i'll sort out hubbies bags of stuff for going back to the hospital tomorrow and try to work out how Microsoft Teams work and then I plan to chill for a bit and watch 'Casualty' or something on iPlayer (you'd think I would have had enough of hospitals).
Good night folks and thanks again to everyone who has been thinking of us and sending best wishes, it's hugely appreciated. Keep your fingers crossed for us tomorrow and here's hoping tomorrow night i'll be back with good news.
Katie xx
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Decision day tomorrow so hopefully good news then and these measures they are taking are just to keep him well enough for transplant rather than something which will hold us back.
I am doing ok, better seeing him more settled after what was a whirlwind of a day from going from outpatient to suddenly inpatient, tubes going up noses and insulin introduction.
Sounds like you’re being retrained as a medical technician! I wouldn't know where to start on all that kit! They sound very thorough, which must be reassuring. Hope you’re able to get some rest and are sleeping ok in the caravan. Good luck tomorrow and let’s hope the outcome is what you’re hoping for.
Yep, you're not kidding. The transplant surgeon and co-ordinator were already suprised that I knew about the liver perfusion machine that's used to keep livers 'alive' prior to transplant etc. Certainly don't think i'll be getting much rest once he is out of hospital as it's almost a full on nursing role with all these meds and things to administer. Fortunately my Dad is clued up on this pump system as my sister has been PEG Fed using the same pump and system for some years so he's going to be a great help as I find my way round that.
Hi Katie, Wow , what an exhausting day to say the least ..
On one hand I must say the hospital are doing a great job taking care of hubby .
Bless him for keeping strong as can be during all this assessment, not to mention coping with the nasal tube ..considering hubby has issues with endoscopy, don't know how I'd manage with that myself but it's not about me .
I'll be thinking of you both tomorrow Katie, pray 🙏 all goes well for a positive outcome
Thanks for the update Katie. It sounds like it is predominately positive.
The libre is a game changer. Easy to fit and not only can it link to hubby's phone, you can also have an app and get his high and low alarms. Hubby was 250 miles away and I still got his readings 😄. Getting used to the injections is a challenge, but within a week or so, it had become second nature.
Hope you're warm and cosy in the caravan! Sending my best to you and hubby too of course.
I've been asked by hospital to download the Libre App so that is ready to go for tomorrow when we do the 'training'. Hubby doesn't have a smart phone so that's on my phone ready. Good to hear that it's a useful tool.
Caravan is great, this is a new one, only picked it up last Thursday and it's got the cosiest fitted double bed which I and the cat have pinched in his absence, normally I am up front on the front seats made into a bed.
Back in tomorrow at 10 for meeting with consultant and my training sessions. Then full steam ahead to MDT and 'the decision'.
You are an inspiration Katie, coping with so much. I am sure everyone on here is sending the most positive energy your way for a good outcome tomorrow and a Happy Burn's Night to you both.
well, just read post 3, it’s 5.30 am Friday and the day of decision. Truly hoping that all goes well and approval is given. Who knows Katie, this time next year this terrible ordeal may just be a memory to remind you both of how fortunate you are…well, it’s my hope for you both anyway. Prayers, hopes and best wishes to you both 🙏🙏🙏
I laughed out loud when I read that you were going to watch "Casualty" after all you have been through but it's good that you can keep a sense of humour with everything else that is going on.
I'm thinking of you both every day and saying a little prayer and your updates are the first thing I turn to when I switch on my laptop. Hoping for the right result later today.
Wow that’s a lot for yous to take in, your strength, determination and positivity is amazing so thanks for sharing these insights, your hubby seems a fighter and with you by his side who is also obviously a fighter, I’m sure together yous have this and fingers crossed for yous that it’s all good news regarding a transplant. As someone who spent 2 years in and out of hospital when I was a child, I know from first hand experience how traumatic it can be, but I can imagine it’s more so for you guys. I was lucky in that I didn’t quite know what was going on around me and had a kind of child like ignorance is bliss situation in that I felt covered/protected from the jargon, tests and everything else going on. I was a kid and while I was scared and very poorly, I always knew I’d be better one day soon because of all the wonderful doctors and nurses amd whatever they were doing around me was all good and so will your husband I’m sure. Have a better day today than yesterday and good luck 👏
Hi Katie, Thank you for sharing your story with us all. I am following it all and can't imagine how hard it must be for both of you, but are thinking of you and hope all goes well today. xx
best of luck ! God bless. It’s coming up on a year since my liver transplant. I’ve been in and out of hospital since regarding my kidneys. Just got out
a few days ago after fainting and breaking my left ankle atop of everything! But I think they finally got my meds right. Also lost hair from taking tacrolimus ! Long road but, chugging along !
Thinking of you Katie, hope you are looking after yourself as well as hubbie. My husband is diabetic and has recently been prescribed the LIBRE system and it has been amazing. He can monitor consistently and his blood sugar is more stable than for a long time. Hope everything goes well tomorrow
Wow, I don't know how you've managed to get through all of that in such a short space of time! I'm glad that writing the updates are a help to you and I hope that you'll have some answers soon xx
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