Husband had oesophagectomy on 9th June

[Redchip]

He was doing so well. Eating jelly and ice cream by the 4/5th day. He then developed a leak so went back to nil by mouth. Last night they took him back to Intensive Care and at one point were talking about putting him on a ventilator. They haven't done that yet but he is apparently quite confused and is on high oxygen. I am beside myself with worry and obviously can't visit him. Is this or can this be normal with this procedure? Lynne

[liz_crisp]

Hi Redchip, this is not unusual with this operation, few recoveries go totally to plan, and many of us have a few hiccups before leaving hospital, it must be very worrying not being allowed to visit, stay strong and big hugs God Bless you both

Lizzy

[Redchip in reply to liz_crisp]

Thanks Lizzy. Just so hard not seeing him and imagination goes into overdrive!

[liz_crisp in reply to Redchip]

If he starts to feel a bit better you could try video calling with him, talk to the nurses and see if he can use the hospital wifi, it will lift his spirits too im sure. hugs

[Mauser1905]

Hello Lynne,

Normally a patient undergone oesophagectomy will be discharged in 12 to 14 days, if no complications arise. Textbook procedures are common in my belief, in general; as we only hear of the cases where something had been or going south.

I can understand your situation. Every patient and his/her response physiologically is different to this radical surgery. Leaks do happen and normally contained within hospital itself. However this puts the clock back for a long period of time for recovery.

Its like wounds, some people have tendency to heal those quicker whereas some would not, it is what it is.

Perhaps the leaking fluids were drained with the drains he must have had already, so no sepsis was caused. I would ask hospital team for this.

Back to ICU, confused, on high levels of O2, not on ventilator yet.

His lungs are struggling, his blood carbon dioxide levels are rising due to that and he is needing oxygen, perhaps he is not critical to be put on the ventilator and thats good. Low levels of blood o2 to brains, sedatives will cause confusion.

Hope he gets right attention at the right times, where required.

I have read between your lines and tried to write a reply. Suggest you ask the ICU and surgeon following as a minimum. Keep a pen and paper to write down or record the voice with notice so you can replay if some medical terms difficult to understand that point in time. Or have somebody else with you on loudspeaker to take notes etc.

1. Is the leak stopped and what damage the leak had caused?

2. What are his saturation levels and observation stats immediately before the call? Is there any concern on the observations? Is the underlying cause detected and being treated?

3. What was the reason for him to move back to ICU from ward? ( guessing he was in general ward after the HDU)

4. How are his lungs doing? Especially prior to readmission to icu and thereafter? Any pleural effusion? Infection caused?

5. Whats the status on his all other organs, are these performing normally?( if any of those struggling then ask options being used to treat)

6. What is current pathway being used and options going forward to HDU transfer?

7. Ask the icu nurse in charge for possibility to do video call to your husband so you can try and comfort and assure him. (He may not respond how you would expect normally but he would hear you. Only talk good assurances and ensure your anxiety is not transferred to him. He is confused, needs "anchoring" assurance which you can provide if he goes in sedation, if happens. It will help him waking from the sedation sleep)

Please ask the team immediately a d write down everything you can. Chances are you may be emotionally upset so suggest having somebody else also taking the notes and preparing questions beforehand. Also suggest if you can get their email you can type in and send the question list in advance so drs can come prepared with answers.

Stay strong.

I didn't have leaks but had many complications, long story and recovery. Still here. Sometimes things go pear shaped, gather your strength and will power.

Regards

[Redchip in reply to Mauser1905]

Thank you so much for your really in depth reply.

He went back to ICU because of a chest infection and the general ward couldn't give him the high levels of O2 that he needed. His chest drain was still also draining off quite a lot of fluid.

I know I needed to ask more questions but really didn't know exactly what to ask! You have given me the guidance on what to ask - thank you so much.

Lynne

[HarryJaffa in reply to Mauser1905]

Great advice here

[Bunny69]

Hi Lynne,

This is what happened to me two years ago almost to the day. I was on jelly and ice cream and soup. A leak was suspected after having the leak test which knocked my recovery back and meant I missed my daughter's 21st birthday. I had an infection that required a drain to be put in through the middle of my back which was put in with ct guidance. I was put on a generic antibiotic until lab results pointed to a specific type. The drain was monitored until eventually a scan showed the problem had cleared. The option being discussed at the time was going back in to repair the new join, this wasn't something I was keen on but remained a possibility. There is another procedure where a glue is used which I think is mixed with the patients blood and is sprayed inside the new sarcophagus endoscopically . There was a patient in Aintree when I was in who had several leaks over about 12 weeks and they did the spray procedure with him. I wasn't suffering from low oxygen when my infection was discovered but a nurse noticed increase in temperature which got me on antibiotics very quickly.

It must be doubly hard to be going through this with covid situation. My wife and daughter were with me almost constantly during stay in hospital and my wife even had a room in the hospital accommodation for a time.

This knocks you back but recovery is something to work at in manageable steps. I was in diagnosing hospital for 8 weeks while they debated what to do, then in Aintree for 5 weeks . I was lucky in that the position of the leak and the collection of infection was in a position the intervention team thought they could guide the needle through past major organs to fit the drain. It wasn't pleasant and was painful but without it they probably would have had to open me up again.

I wish you all well with your husbands recovery and hope from here on in it is an easier road without the bumps you have had up to now.

Best Wishes

Bunny

[kiddy]

Hi, sorry to hear that. We all heal differently hopefully it will get sorted and he will be back on the normal ward. The pain meds will be causing him confusion.

Difficult times not being able to visit.

Best Wishes

Debbie

[Graham39]

Hi Lynne,

Following my op. I had a leak, was put on oxygen, then a ventilator, had various infections and spent six weeks in the Royal London Hospital. That was ten years ago,I am now eighty years old and will be playing golf three days next week. I'm sure things will work out fine for your husband.

Graham

[VBCardinal]

Lynn: I had the exact same thing happen to me almost exactly a year ago! This is a very common (30% I'm told) complication from an esophagectomy. It is certainly dangerous, but very addressable. It took me about an extra month to recover from the leakage. They reopened one of my cuts and it took that long to re-heal and recover. Now, a year later, there are no "additional" byproducts of the surgery than I would have had otherwise. Keep the faith. It is addressable.

[Notknowmuch]

Hi Redchip, it is indeed worrying Times but keep positive and trust that your husband is in good hands.

I have no advise and nothing that I could think to say to make you better. You and your husband are in my prayers and sending best wishes your way.

[Redchip]

Thank you for all your replies to my message. I can't believe I'm actually writing this but my darling Richard passed away on Sunday morning. They tried to put him on a ventilator but just couldn't, his oxygen levels were so low and he had a cardiac arrest. I have spoken to his surgeon and they are all devastated - he was doing so well but a chest infection took hold and they couldn't get on top of it. The operation itself was a success, the leak he had was extremely small and had healed itself. The surgeon was looking forward to telling us that he was cancer free.

My darling husband was 55

xx

[Mauser1905 in reply to Redchip]

Oh god. Gutted to hear that. So sorry for you, just so unfortunate.

Prayed for his departed soul. Stay strong please.

[Notknowmuch in reply to Redchip]

Oh Redchip, I am so sorry to hear your news! Lots of virtual hugs sending to you 🤗🤗🤗.

Please stay strong and take good care of yourself🤗🤗🤗🤗🤗🤗

[Guitarhero in reply to Redchip]

I am so so sorry to hear of your news.

[Hidden]

So sorry about your husband thinking of you lots of love to you xx

[kiddy]

I am so sorry for your loss.

Sad times, take care x

[liz_crisp]

So sorry, that is indeed unexpected sad news. Huge big hug, take care of yourself. Thinking of you

Lizzy