The Twelfth Day

A lovely relaxed Sunday following the best sleeping night yet.

Five visitors at a good pace. A nap in the early afternoon followed by an "outing" down to Starbucks on Marlybone High Street accompanied by a wheel chair for a little assist. Then a drive around Regents Park just to see the sights of the world at large denied over the last twelve days. This was possible as Richard is taken off the feeding bag for four hours every day. It was fun and restorative.

Just saw a team of doctors and the Sister on duty doing their rounds. Did a little drink test and Richard's swallowing, though better, is still bit lazy. It will come as the nerves and muscles get ever more used to their new situation.

Chest infection under control, more protein showing up in the blood tests, all good indications.

We're looking forward to another good night's sleep and then seeing the nutritionist and the physiotherapist and then on to the swallow test. We've got our work cut out for us on the start of another work week!

The Eleventh Day

Everything proceeding well for a projected Tuesday morning discharge. Sounds sticky, but I'm confident it will all go smoothly!

Prof Hanna said Richard could go home on Tuesday after the Wellington visit but I think Richard wants to process this transition home very deliberately. A rather new approach for our dear Richard!

Yesterday, after a full day of 12 visitors, physio, nebulisers, drips, etc, etc we both got better sleep than any day previous. I missed the nutritionist meeting but there will be another on Monday and Francois took audio notes on his iphone which he then email to me. Amazing!  Dr. Patel came while I was gone to examine Richard and said regarding his pneumonia, "a lesser man would probably have succumbed."

Today, when I left around 3:30 to come to the flat we'd already had nine visitors, a shower, dressing changes, meds, a walk around the corridors and a meeting with Dr. Patel, the day duty doctor and Prof Hanna who all arrived around the same time. They agreed to take Richard off a few medications and proceed towards a Tuesday discharge. Prof Hanna examined Richard's incisions and had the sister on duty take out all the staples in both the front and back incisions. So now he only has a dressing on his front incision as it is not yet completely dry, but that's it! Still has his iv port on right wrist and the feeding tube but we're getting there.

Apparently, regardless of the outcome of the swallowing tests on Monday we will go home and Richard will start to drink and then eat slowly with special techniques determined by the test data, all the while supported by the nutrition from the feeding tube. I will be administering the food which is to be delivered along with the pump to Whithurst on Monday.  I've been watching and training with the nurses and feel pretty competent. Prof Hanna told me I would have no problem...it's not at all difficult and you can't really mess anything up.

Richard and I were talking about employing a private nurse for a few days or a week but Prof Hanna smiled and said we didn't really need to, we would be able to handle it easily. I know he's right and I feel he knows how important it is that we assume the responsibility for Richard's well being as soon as possible. The final step will be my releasing Richard to assume that responsibility for himself just as soon as he feels ready. Might have to give him (and myself) a little nudge but it will be a gentle one! All will be accomplished in the fullness of time.

Thank you all for your continuing prayers and good energy!

The Ninth and Morning of the Tenth Day

Are we all getting a little "blogged out"?

Richard's been doing his physio, walking around, blowing in this little tube game-like thingy (technical term) trying to cough and generally being a good boy. It's paying off and his breathing is alot less congested sounding to me...no rattling chest. All his functions are good and he's gaining more strength every day. Just an hour or so ago after his shower, dressings changes and new clothes Francois and I walked with a tubeless Richard (they just disconnect the food bag) around the ward corridor, stopped in to say hi to Paul, another patient of Prof Hanna's who's had the same op and who thinks he's being discharged today, carried on down the lift to the reception area for a breath of air, strolled back to the ICU ward where he got a hug from Googoo, one of his magnificent nurses and then went back upstairs to the room. 20-25 minutes of good exercise. I took his blood saturation levels when we got back and they were at 94-95...excellent. He's still having to take a tiny bit of oxygen when he's laying down as lungs don't operate at full capacity in that position.

Richard slept more last night. About three hours from 10:30  - 1:30 and then probably another hour or so in there til 7am. So that's getting better. No strangled/coughing in the night either, thank goodness.

The outpouring of loving concern expressed in flowers, plants, cards, crystals, rose water sprays, books, etc is overwhelming! It has made a very beautiful physical display on his wide window sill. Visits are flowing with a healthy, reasonable pace...we just wish we had some more chairs!

Richard is scheduled to go to the Wellington Hospital at 2:30pm, this coming Monday for an assessment of his swallowing function in the specialist unit. Haley, his Speech and Language Therapist, comes from there and it is where they can then see via xray and some special liquid what's actually happening and then be able to treat it with specific exercises. My feeling is that they are also just giving it time to repair naturally, as the inner bruising of the controlling nerve and muscle tissue subsides. He gets to ride there in an ambulance which he's quite looking forward to!

Claire, his physiotherapist told him today that he was doing well and to keep up his hourly blowing/sucking exercises, keep walking and to stretch his limits just a little each time being careful not to overdo it.

There's supposed to be a training meeting with his nutritionist this afternoon so we can be prepared for the eventuality of his eating and drinking at home even if that, for the moment, is hooking up the nutribag.

All seems to be moving in a positive direction.

The Eighth and morning of the Ninth Day

Things seem to be progressing nicely now.

I got back to the hospital around 4:30 yesterday afternoon. Jill, Richard's sister and Mike, her partner were there with him having a good visit. He'd already had three other visitors and was to have two or three more during the course of the afternoon and early evening. More lovely cards and beautiful flowers arrived...his window sill is chock a block.

He'd had more physio and they had reduced his oxygen to just 2% indicating that his lungs are doing what they need to. No real news on the eating and drinking front as I think they are just giving it a few days to allow the natural healing to occur when everything will reset itself.

Francois has been a guardian angel and keeps everything ticking over in a positive way. He left to stay in our flat, I got some dinner sent in and Richard fell into a delicious early sleep. We decided "sleep when sleepy" was the best policy in trying to get back to a pre-operative pattern.  The peace and quiet in the room was palpable.

Dr Patel and the duty doctor came in for a visit and said things were looking good and then a bit later Prof Hanna came in and Richard exhibited his re-found agility by standing up and running a bit in place. Prof Hanna again indicated that if things keep going the way they are Richard might be discharged by the weekend. He must be pretty confident that his eating and drinking are going to be restored momentarily. But he said, we won't rush anything. He'd be sure everything was a "go" before discharging. Brilliant!!!! Prof Hanna told us he was off for Edinburgh to lecture on Thursday and would return late Thursday or Friday morning to see Richard.

Rosalind, our sweet night nurse got Richard's three things, paracetamol, antibiotics, food bag and nebuliser all done and dusted so we could get to sleep straight through. Richard had a little choking fit as the nebliser started to bring things up his bronchial tubes, which is a good sign. We're more relaxed now so, it came and went without incident.

The night was easier for both of us but I think a normal sleeping pattern will be a week or so away.

This morning Richard had a sponge bath by two lovely nurses, had his dressings changed, given new stockings and gown and all his morning medicines. The "Impovement of the Day" award goes to having the oxygen taken away as his oxygen saturation level is now normal! One less tube! Now he just has the feed bag to drag around. Perhaps this experience is teaching Richard patience as he has been an excellent patient throughout!

Richard says he is going to be able to tell visitors that he has to go to sleep when he feels tired because there does seem to be the danger of numbers of well intentioned friends showing up at the same time. If that happens to anyone who is yet to visit, please know that Richard does want to see you but his healing  process is still very much on-going and rest is a huge part of it so "short and sweet" is what it must be. Literally, just seeing your faces and hearing your voices for a minute or two is enough right now. There will be plenty of time for real visiting later on. And if I have to, God forbid, I might ask that some people come back another day if it feels like it's getting to be too much. (What me, a control freak?? How very dare you!) To avoid this I ask that you call or text Richard's mobile 07770225536 or the room 415 phone before you come up to the room. You all are a big part of the healing process too but the balance has to be right.

I just had lunch around the corner and the waiter who is a friend of ours has a new tattoo on his arm. "Memento Vivare". Remember to live. I will tell Richard.

The Seventh and morning of the Eighth Day

Couldn't get online last night...sorry.

It's all getting to be a bit of a blurr.

Yesterday all the doctors agreed that Richard would be better off upstairs in a private room rather than remaining in ICU even though the outcome of his pneumonia was not completely certain. Richard told them that he had not slept a wink in four days. This, undoubtedly has been affecting his thinking, his mood, the entire healing process. While doctors and nurses have been telling him that he is going to be fine, not to worry, he has been fearing the opposite. 

All his vital signs are good. He's a bit anaemic and the congestion in his lungs has not shifted significantly, plus he still cannot eat or drink. Sounds horrible, but considering what his body has been through and that he is now only connected to oxygen (only 6% as opposed to 15% three days ago), feeding tube into upper intestine (2000kcal a day with hydration) and has a cannula on his right hand with ports to connect iv antibiotics and paracetamol , (his only pain killer) that's not too bad! He says he's doesn't feel hungry and is constantly swishing water about in his mouth and then spitting it out to keep it moist and feel like he's drinking. He looks entirely normal (why are some of you laughing?) to me! His mobilization is improving exponentially. He's going to the loo on his own. We put the little two pronged nose oxygen nozzle on him today so his face has been freed up. So, really allot of progress.

Yesterday he had his SALT assessment by a lovely Kiwi, Hilary. Essentially what it showed was that his epiglottis (muscle flap) and vocal chords which overlay each other and keep food and liquids flowing into the esophagus and not the bronchial passages is not functioning properly at the moment which the doctors believe is down to bruising of the muscles and nerve, so they're doing some more investigations and frankly just waiting to see if it corrects itself which is what I think will happen. This is why he can't eat or drink yet and also why he hasn't been able to perform the helpful act of coughing up the phlegm in his lungs. It will get better each day is what I believe and what the doctors have told us.

Just two more things before nap time.

Please text me before coming in to visit. There is the potential for visitations to get out of hand and Richard, as most of you know, has a hard time restricting his socializing! He's indicated to me that it's not quite time to open the doors fully. Both of us though, want to say how much everyone's incredible outpouring of love has meant. The prayers that people are saying for Richard all over the world, just that positive intention, like someone holding your hand when you are scared, is getting through. Thanks for the cards, beautiful flowers, supportive emails, texts and telephone calls!!!

Lastly, the roller coaster ride nature of Richard's journey so far was reflected in a frightening incident last night which ultimately resolved itself in a positive affirmation. Around 10pm after getting settled in the private room and meeting our night nurse, Beverley, Richard was dosing and I was trying to get on the computer. His yawns sound a bit like someone is stabbing him right now for some reason but they come and are over in a few moments. This particular yawn though kept on, and I looked up to see him writhing in his bed gasping and trying to cough. I ran to the bed and pressed the nurses button and gently hit his back and said, calm down, I'm getting the nurse, you'll be ok all while he was gasping for breath in an extremely distraught way. It seemed like something had gotten loose in his chest and was clogging his airways. Beverly came in a minute or so and by that time he had recovered somewhat only to have two more fits which he said he could feel coming and which ended in a little bit of discharge. We asked that a doctor be called and calmed ourselves down as his breathing resumed in a normal way. About 30 minutes later Prof Hanna, who had been doing his rounds, and the duty doctor came into the room. Prof Hanna sat on the bed and listened to the story and examined Richard. I told him about his SALT assessment earlier in the day when Richard had drunk three tiny sips of a starchy liquid, two of which seemed to go down the bronchial passages, or so the therapist said. Dr. Hanna after a few minutes deliberation said. You're fine. Don't worry. If that happens again just try to be calm. Nothing can go wrong. He smiled and said, you're doing well. You might even be back home by this weekend! Richard rolled his eyes a bit in humoured disbelief. And so it goes.

I was able to spend the night on a cot in his room and had my eyes and ears attuned to him the whole night just in case there was another episode which, thankfully, there wasn't. We both slept fitfully, but for Richard, I think cumulatively he must have gotten a good four or five hours sleep.

So today there is another SALT consultation, the doctors pow wow, the physio, a few scheduled visitors, and hopefully some more sleep!!!

Francois came up from Whithurst and is staying with him in the room while I get some sleep in the flat and gather a few things together. Francois got me on the hospital wifi so I should be able to post more regularly.

The Fifth and Sixth Day

Very briefly...last night was pretty rough. Richard thought he was going to die. The day was pretty routine but punctuated by two visits from Professor Hanna both of which left a smile on Richard's face and confidence in his heart. Constant moist oxygen altered with a nebuliser to get the phlegm broken down. I wanted to stay the night at the hospital and luckily they had the same room available. I went up around midnight leaving Richard sounding pretty awful and told him to call me at any moment he felt like he wanted me near. The call came at 3am and Maria, the duty nurse said he wanted me. He was very agitated and said he thought he might be dying. I got Maria and another amazingly sweet nurse to come over and tell him how well he was doing (no lie), all his vital signs looked very good and it was just going to take some time to get rid of the infection. This put him in a better mood and by 3:30 he was asleep holding my hand and we pretty much stayed that way until 5am when he woke and said he felt a lot calmer. They kicked me out at 6am and I went back to sleep upstairs til 8:00. He seemed a bit better and full of purpose when I returned and he shooed me off to take the car back to Earl's Court and get back by 10:20 for a big doctors meeting about him. I did that but when I returned I had to wait til he was finished with physio. By the time I got back he'd already done two walks around the ICU unit and was being taught coughing techniques.

Janine, the day duty nurse, set my mind at ease saying he was doing really well and we shouldn't get worried.

Signs of progress: he had a bowel movement! (momentous occasion), they've reduced the concentration of his oxygen by about half and he is getting excellent saturation levels which shows that the lungs are improving, I think. They turned off his epidural and will remove it tonight if he's still comfortable. The neck iv should be removed this evening and he is scheduled to have his SALT (Speech and Language Test) later today to access how his throat valve is working as it must stop liquids and food from getting into his bronchial tubes before they let him drink and eat.

When I left around 12:45 after the panel of doctors had done their assessment and seemed pleased with the progress, Richard seemed determined to do lots of walking and practice his coughing. He said his life depended upon it. So he's still very nervous about his condition but feeling optimistic at the same time.
It's 2:19, I'm back at the flat and am going to sleep for a couple of hours or else I won't be good for anything.

The Fourth Day

I saw Richard in hospital around 1pm where he was again sitting in his chair. They'd already had him up walking and had to insist that he couldn't go up the stairs! (I haven't seen the process of 'walking' myself but I think its a bit of a to do...like a courtly procession, with all the machines being dragged around behind him and people making sure he's not snagging any tubes!) I sat opposite him and rubbed his stockinged legs until the new lady patient next to him said, "When you're through with him you can start on me!" Nice to be appreciated. I was told that they'd started him on antibiotics to head off the little infection in his chest. Two visitors kindly came in very briefly to say hi just before 2pm.

Around 4:30 I returned to find Richard soundly asleep so went into the reception to give him some time. When I returned around 5pm there were several nurses huddled around his bed and I rushed over. He was shivering violently and said he'd just awakened from the worst nightmare he'd ever had. His temperature rose to 38c and they gave him some paracetamol intravenously. In about five minutes he was fairly well settled again. He told me he'd had two more lovely visitors since he'd last seen me.

The evening progressed with another visitor coming in and cheering Richard up wonderfully. We all, with the fantastic nurses, rather comically stood/sat around and practiced our coughing techniques as it's important that Richard eventually can cough up the phlegm in his chest.

Dr Patel came in and looked over Richards charts and heard about his shivering episode and didn't seem too worried. He asked that a new type of moistening oxygen mask be put on. At the 8pm shift change Professor Hanna came in and looked over all Richards charts, spoke to all the nurses and introduced us to one his sweet young daughters who was making the rounds with him. He said that the infection in Richard's lung was being treated and he fully expected it to clear up. The reason that Richard was having trouble coughing was that the nerve which controls the valve around the larynx was bruised and therefore impeding the process. It would take a few more days to recover. He said that Sunday he wanted for Richard to have his leak test, which if he passes, will allow him to take some small quantities of water and slowly build up to soft solid foods. He also said the neck iv port would be removed and replaced by an arm one and a couple of the drains would be removed. A few less wires, tubes and piercings. Yipee!

Richard was shooing me away at 8:30 to have dinner with good friends, David and Ian, in Earls Court but I told him to call me if he wanted me back as I could tell he was a bit on edge after his shivering episode. Sure enough, at around 11pm Freddy, his nurse called to say Richard wanted me back in...the duty doctor was talking about putting him back on a ventilator as his congestion was a bit worse. Ian, himself a renowned surgeon who was on call with his hospital,  selflessly drove me back to the hospital and came in to talk with the staff and see Richard. It appears that, whatever Richard understood the duty doctor to have said left him extremely frightened that unless he stayed up all night and cleared his lungs every 20 minutes, he would die!!! So, no wonder Richard was agitated and wanted me there. Because of this Richard had also asked that a physio come in to see him immediately. And, in fact, the lovely Eve appeared in no time and helped Richard in a wonderfully quiet, reassuring way to try and cough up what he needed to and assisted with a vacuum tube down his nose. Ian felt Richard was in good hands and saw all his vital signs were good so went home. I sat around until about 12:30 am when Maria, the duty nurse kindly found a room upstairs for me to sleep in, just in case Richard wanted me during the night. I slept til about 7:45 then went down to be there during the shift change. Richard told me he had slept some and had gotten some phlegm up during the night. All his signs were good. He's still having to have constant oxygen til the lung that was collapsed for the surgery regains it's full capacity. And sadly, his new mask, while providing warm, moist air which is giving him oxygen plus helping to break up the fluids in his lungs, is a bit less comfortable than the other ones. I left him around 9am looking forward to a dressing change, then getting to his chair and hopefully the leak test, though his nurse Manga said she thought those were only done on weekdays. Poor guy, he's been through the wars! It will be such a good step change when he's into a private room where I know he will sleep as I did last night. With luck, that should be Monday or Tuesday. It's 11:28 as I sit here back in the flat and post this update. Onwards and upwards!!