This blog post is a condensed version of a separate blog that I wrote just for this procedure. Here's the link so that you can read the whole blog: https://newvalve.blogspot.com. There are only nine posts. Alternatively, you can read the summary below.
This was Harrison's first experience of surgery on an adult ward. He'd already had a couple of stays for cardiac catheters (in the same side room) so the environment was no longer unfamiliar to us but the the pre and post op process was. i.e. would we be able to accompany him to the anaesthetic room and go to him in the recovery / ICU area (as we did for paediatrics)? For the cardiac catheters he was brought back to his room and we weren't able to be with him downstairs. The staff had forgotten to collect us from Harrison's room to go down with them to retrieve him. We like to be with him as soon as he wakes, to ease his anxiety and confusion and to anticipate his probable reactions to the anaesthetic.
In theory a valve replacement via cardiac catheter is now a straightforward procedure. However, as we all know, Harrison has never read the text books and likes to do things his own way! I asked him to give his cardiologists (and us) an easy ride this time! I thought you might be interested to read an article on pulmonary valve replacement written by the Royal Brompton team in 2016, featuring Harrison's cardiologist (Dr Michael Rigby):
And here's a video on the procedure (Melody Transcatheter Pulmonary Valve Therapy Procedure for Patients):
Harrison signed his own consent form. It was an extremely comprehensive booklet to read through. He was second on the list. Dr Rigby emphasised that this isn't an easy procedure and could take up to 5 hours. He also said that he may not be able to do it at all for various reasons and that there was a 1 in 20 chance that it might culminate in some surgery. He squeezed in a straightforward case before Harrison so that he could allocate the rest of the day to him.
So here's Harrison waiting for Dr Rigby to do his "warm up case" as he’s called it!
Harrison was taken straight into Cath lab 2 for his anaesthetic. He's usually put to sleep in a tiny room outside the Cath lab but this time was treated to the full works on the procedure table itself.
As always, the staff were brilliant and Harrison was our amazing, brave boy. They already had photos of his PA stent and valve stuck up on the cupboard doors. Either that or they hadn't got round to taking them down from October!
Dr Rigby came to see Harrison and to let us know that the procedure went like a dream! He was delighted that there were no complications and Harrison remained stable throughout. He surprised everyone by finishing an hour and a half early! Bernard and I got the call whilst we were driving around Chelsea looking for a new car parking space. Harrison spent about an hour and a half in recovery before returning to his room.
Whilst Harrison was in the cath lab Bernard and I wandered down the Kings Road in a zombie like fashion. Even though I was looking, I couldn't tell you what was being displayed in any of the shop windows. We had to remain slightly aware of our surroundings as we had to dodge numerous orange blobs from Centrepoint jumping out and dancing around in front of us. We were NOT in the mood to have a chat with them today!
We barely spoke to each other until we sat down with our lunch in the Peter Jones restaurant. Even then the conversation was interrupted with us checking our phones for any missed calls or messages from the hospital.
After lunch, we ambled around the back streets of Sloane Square heading in the general direction of the hospital. I suddenly realised that we should have moved the car twenty minutes previously! Cue rapid walking back to the car searching for any vacant spaces en route and hoping that we beat the traffic warden! Thankfully we did but finding that space seemed to be more difficult than replacing a pulmonary valve today! Bernard dropped me off at the hospital so that I could be with Harrison whilst he continued the game of hunt the space.
Harrison had obviously been reading the medical textbooks closely because he was recovering very well ;-) He just had the usual equipment - ecg, blood pressure cuff and saturation monitor along with this contraption on the wound site (he wanted me to photograph it to show you):
As the time went on he became more chatty and fussy about all the lines and plasters. Despite everyone telling him to rest, Harrison said he couldn't because "the sleepyness has all gone" the anaesthetist had done such a good job reversing the anaesthetic! We've now got a problem keeping him lying flat for 4 hours. Nice problem to have though!
Compared to October this is a brilliant recovery, so fingers crossed it continues. I'm quite optimistic because his colour and numbers look very good. The plan for tomorrow is for a chest x-ray, echocardiogram and the blood tests for the immunologist.
We had two attempts at removing the pressure device. The wound site was fine as long as he didn't move. He was finally allowed to sit up a bit but unfortunately this caused him to spring a leak!
Another hour laying flat coincided with the arrival of his Pizza Express Piccolo meal.
The new valve is already having a dramatic effect. Prior to the procedure Harrison was quite lethargic all the time and eating was a laborious process. Now he is chatting excitedly and managed 6 dough balls and a child sized pizza without any problem. It was the first meal he'd had since the previous evening but was still impressive!
We settled down for an early night but I'd forgotten to give Harrison his watch back. Despite his melatonin medication, I found him wide awake and sitting up at 1:43am thinking that it was already morning. I, on the other hand did not feel so wide awake at this time! It was my second night on the camp bed and although I'd made attempts to soften the mattress with a thin quilt, it was still one night too many. It felt like I was lying on a slab of concrete!
We're extremely fortunate to have only one of two side rooms on the ward. The disadvantage though, is that we're quite cut off from the rest of the ward.
However, we know everyone is still out there when the banging of doors starts at 6:30am! We're sandwiched between a shared toilet and the entrance to the pre-assessment unit / offices.
I'd barely sat down in the chair outside the x-ray room and Harrison was out again. It wasn't the case in the echo department though. Bernard timed his entrance perfectly this morning. We were leaving Harrison's room to go to the echo department as he turned up with a coffee for me. We both followed Harrison and the porter over to the other part of the hospital to wait his turn. As it was so warm on Paul Wood ward and in x-ray, it didn't cross my mind that it might not be the same in other areas. Fortunately, Bernard hadn't had time to take his jumper off so he put it on Harrison. We'd been waiting in the chilly corridor for over 20 minutes and nobody had been called from the packed waiting room. Bernard to the rescue and 10 minutes later Harrison was settling himself on the bed next to the echo scanner. The doctor conducted a very thorough review of Harrison's heart taking lots of images, measurements and pressure readings.
On our way back to the ward we saw another paediatric consultant who joined the Brompton team as a Registrar at the time of Harrison's last open heart surgery in 2009. She stopped to chat with us to find out why we were there. She had observed part of Harrison's procedure yesterday, not realising that it was him on the table! She commented on how proud Dr Rigby was in completing the procedure so quickly.
The x-ray and the echo both looked as good as they could so Harrison could go home! The only concern the staff had was his continued low blood pressure. After a couple of repeat readings and specific questions to Harrison (not that he was going to own up to anything other than feeling fine at this stage!) they collectively decided that this was his normal and agreed to discharge him.
He was put back on aspirin again (a double dose for the next 6 months) in addition to his other medications and we need to be aware of signs of infection in the valve. He was back at the Brompton for a repeat echo and outpatient appointment 6 weeks and 3 months later.
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| Usual morning medication (still the same today 26/02/22) |
I noticed that since recovering from the procedure, Harrison started asking lots more intelligent questions and contributing meaningfully to conversations on current news events. It made me realise just how tired he must have been feeling for so long, yet he did his best to carry on as normal.
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| And he's free! |
Compare this procedure to the one in 2009. You can clearly see the immense benefits to the patient, their family and the NHS when it's possible to perform procedures percutaneously. A rough estimate for the bed only (procedures, medications, equipment, doctors and food not included) was around £38,000 for the 2009 operation and £800 for this week. Thanks to the ongoing research and development, the outcome for Harrison is the result of all that hard work. There are a lot of problems in the NHS but without the expertise and commitment of Dr Rigby, Mr Shore and their teams Harrison wouldn't be able to look forward to such an exciting 21st birthday year of activities.
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