Ralph doing well and happy with progress. Last Tuesday SALT said leave cuff down for 24 hours from Thursday to Friday morning, and if that went well, leave it down all weekend unless he was in distress. Then the plan was to put in a fenestrated cuffless trachy this Wednesday coming. Best laid plans etc. Last Tuesday night the cuff on his trachy got a puncture and went down Tuesday night. So as he'd already done 24 hours by last Wednesday, ENT decided to bite the bullet and put in the fenestrated cuffless one wednesday afternoon a whole week early. He's been fine although says it takes getting used to breathing through nose and mouth again as well as neck breathing.Here's where it gets interesting. ENT said before he comes home they're going to try capping the trachy which means covering it up and breathing alone. Says that can take a few weeks but once he can have it capped for 72 hours he could have it out altogether. Still may not be able to eat or drink though.
SALT came on Friday and was thrilled he'd got the new trachy. We said he may get it out before home and he said maybe not. He gave Ralph a teaspoon of water to drink, he didn't cough, but they had no idea if it went the right or wrong way. So either this Tues or the Tue after he'll give Ralph a swallow x-ray. They get him to swallow barium mixed with either water or yoghurt and take x-ray video where it's going. From my memory barium is a nightmare to swallow so think he'll find it hard. If it's going wrong way he won't recommend having trachy out even if not eating or drinking if he gets a cold etc his airway would be compromised. There are exercises he will give him to see if it improves. So obviously all those electric shocks he had haven't worked. So we're sort of on limbo until after the x-ray results. After that we'll start our trachy training ready for him coming home with one.
Obviously we'd prefer without, but we want him safe, he's worked so hard to survive.
SALT also said if nothing else works he'll refer him to Nottingham hospital for an outpatient appointment so the big guy can see if an operation would help, BUT we aren't sure about that. It was the intubation tube and sedation that started all this. We'll wait and see what happens in the next few weeks. The speed it's moving he could be home by end of July.
Best news of all, because it's cuffless and fenestrated ( holes in it) he can SPEAK, only on out breaths so takes a while but it's wonderful
It wore him out to start with but it's getting better each day.
If you're still here thanks for reading such a long post.
See you later 👋
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Gardenview10
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Great to hear your update and even better to hear the news about getting home at end of July. Hope all continues to go well. Remember to take care of yourself too.Gentle hugs and prayers. Jenny
Happy days, dare I say that it feels like the end of this tunnel is in sight? I know he’s not there yet but it seems like he’s made more progress this past couple of weeks than all the other post op time. You’re a pair of fighters that’s for sure. Sending much love x
It’s so good to hear that Ralph can speak to you, and the wonderful progress he has made so far. I pray for you that his swallow is going the right way and that he doesn’t have to have any more operations. You are at the point of counting the weeks away for his home coming which is so hopeful and must make you so relieved and happy. You must send us a photograph of his homecoming as l am sure we would all like to see that day. God bless.
How wonderful that he can speak again albeit exhausting and having to learn a new way to do so. There'll be no stopping him now! It all sounds good news and great progress especially when you look back to those early dark days and compare those with now and see how far he's come. Your love & support has got him through this awful journey.And a prospective coming home time schedule too, exciting (if slightly daunting) news. You both will manage because you both have the will, love & strength to do so.
So pleased to read this bulletin with such positive progress. It has been a long hard struggle to get this far and I hope the good news continues at pace. Take care of yourself too. Love to Both Jan xx
This sounds so promising you must both be over the moon I hope improvements now continue on a long straight road to him being at home with you Well done Ralph and you too
still looking out for your posts and so happy for you and your family that Ralph is making progress, its been a long haul for you and your dedication and his determination is paying off, keep safe and well yourself and i hope Ralph get home soon,
Brilliant news! Well done Ralph! I was hoping I had mot missed an update from you this week. I bet he las loads to say - how will you shut him up now xx
Good, can't wait for him to be home, but obviously anxious. Ward sister says she doesn't care what the drs say they won't sign off on his discharge until they are completely satisfied we are 100% competent and confident, and also all the equipment we need is delivered, lol. Thank goodness his feed is on prescription and thankful for NHS as to buy enough for a week for him from Amazon is almost £170!!!
PIP under state pension age AA over state pension pension age (66) Wasn't sure how old Ralph is but went under! If you get PIP before age 66 it will continue after age 66 but if you claim after 66 it will only be AA going forwards. PIP can be worth a lot more £££s per week than AA.
You can claim now for PIP, so don't wait for him to be discharged from hosp, but it will only be payable from when he gets out. It takes ages for a claim to be dealt with so do it now, it gets backdated to the date of claim or date of discharge as appropriate. Otherwise you may miss out some payment.CAB can assist with a claim, it is quite daunting but well worth it.
Bet you are planning a big celebration 🤞and a catch up silver wedding party xx
Thanks for updating Sue, that's all great news, he is such a strong man! It seems that now all the intervention is 'little fixes and tweaks' all adding up to get him home. This is so fantastic!
So pleased to hear that he is doing so well. Coming home is sure to help his recovery psychologically as well. As a lot of us know being in hospital even with minor issues is not conducive to relaxation and rest. Home is where the heart is after all.
Reading that gave me the biggest smile in weeks. There's light at the end of the tunnel. When he does go home I bet we will hear the nurses cheering for him. The pair of you deserve medals.
This is again wonderful news..just the fact that he was able to speak..I am so happy for the progress he is making...I truly believe that with a bit more time, he will be able to swallow and eat again..and what a well deserved triumph that would be...his strength and will power is a testament to how much he does want to go home and be with you...and I will continue to pray that he can do that..you have also shown such bravery..and love which is why he is trying so hard..stay positive...and let us hope it is only going to get better from now on...
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