20 days and counting …

As you may have gathered, I’m still in hospital! I mistakenly thought I’d be in and out within 5 days. I was pre-warned that it could take a couple of weeks, or possibly longer, but I thought, I’m tough, I’ve been through lots already, I have a very high tolerance to pain… None of those things make any difference to any hospital stay. It is impossible to predict how you will recover, or how long it will take. I can say, that previous to this experience, I was certain that I had reached the very hight of my pain level. That pain couldn’t possibly be worse that CRPS flares with neuromas… I was wrong. CRPS flares, with surgery is far worse. I was warned, so it wasn’t lime I went into this not knowing that things would be tough. But usual me… I shrugged it off, and thought to myself ‘oh well, what’s a little more pain?’ Well, I can tell you… a lot!!! I’m feeling battered, bruised, sore, sick, tired, and missing my babies. All that said, however, things are steadily improving, and the care and treatment I have received here at the QVH hospital in East Grinstead has been just incredible. All of the staff are just to kind, and caring. They have been there for me through night and day. I know you must be thinking, well thats what is supposed to happen in hospital, well let me say… it doesn’t always happen. After being a Nirse myself for 14 years, I’ve seen a substantial lack in compassion within the field. Yet here, they all have oodles of it. They are warm, and friendly. They make me cups of tea in the night when I’m awake in pain. My surgeon Tania Cubison, the genius, always comes by every morning to check on me. The pain nurses have been in every day, trying everything they can to see me through the tough times. The anaesthetists have been to see me every morning and evening to administer boluses into the nerve catheter in my leg. I am honestly, truly amazed.

So, we have lowered my intravenous pain medications now, and are lowering the local anaesthetic meds going into the nerve catheter in my leg. The pain is rather bad a couple of times a day, which is when the anaesthetists step in. But we’re making improvements in that respect as well. The plan is that the nerve catheter needs to come out by the weekend, as its been in too long by that stage, and could increase risk of infection, which I definitely do not need. So watch this space. Hopefully I will be home by early next week, if not sooner 🤞

TMR progress…

I’ve now been in hospital 9 days. 8 days post op. Had my TMR (Targeted Muscle Reinnervation) surgery on Thursday last week. Had a bit of a rocky ride since then. My pain levels sky rocketed and not much seemed to bring it down, other than visits from an anaesthetist to put a bolus (big volume) of local anaesthetic into the catheter (tube) which was placed during surgery to administer constant local anaesthetic into my leg. We now think that the catheter was rubbing directly on a nerve, so causing more pain. So yesterday, the Dr’s had a pow-wow and decided to take the catheter out. The hope being that the pain would get better. It did with movement, but not anything else, intact it sky rocketed further. I spent the day screaming in pain. Never felt anything so bad. My CRPS was flaring, and my leg was killing, so it was back to theatre to have a new nerve catheter placed.

Now, the next morning, there is a significant improvement. My pain is back to its normal level. Which is amazing. Along with the pain before, the Dr’s tried a few new medicines. Wish we hadn’t, as they all seemed to cause the same reaction… Sudden Tachycardia (high heart rate over 100 bpm) and light headedness. One of them dropped my BP as well, and another caused extreme shaking all over my body. This happened 6 times in total. Rather scary. So now, today, I will be happy just to have a day with less pain, and no complications.

So now I’m still in East Grinstead hospital. I have to say, the staff are all absolutely amazing. Completely different to any other hospital stay I’ve had. They actually believe you when you say that your in pain. They don’t try to kick you out just because they are convinced you should be going home now! Unlike another hospital. Who decided that after a week, I shouldn’t be in as much pain as I was, and started to get quite impatient with me for being in pain!

Here is what hospital treatment should be like. Where nurses actually care, and no one makes you feel like your a burden. I’d actually consider moving here, just for better treatment! So, fingers and toes crossed for the next few days, and with no more blips, hopefully I will start to recover nicely.

The Surgery

Photos taken before and after my surgery.

As you can tell, I finally got a new date. I was to go into hospital on the 01st of April 2019. Typical, I thaught. April fools day. Says it all really! The couple of months leading up to this date were really hard. Things took a steady decline, and I was in more pain than I could handle. So when the date finally came, it was such a relief. The plan was to go in to hospital on the 01st and have my amputation on the 04th. My surgeon wanted to get me in early so that they could get my pain under control before the surgery.

So I sat in hospital and waited, and waited, and waited, then got dressed for my block in my leg that was going to relieve my pain, but this was cancelled. So I waited some more, and before I knew it, it was the night before my amputation, and still no block. Well this was a bit disappointing. My surgeon was equally dissapointed. The pain doctor diddnt book me in for the block, like she was supposed to, so I had to be put on the emergency list. But there was always bigger emergencies than my block (which I understood).

The night before surgery was absolutely fine. I thought that I wouldnt sleep. But I had my usual amount of a few hours around pain killers. I was 1st on the list, so my wife came to the hospital first thing. We sat and waited, and waited, and waited, and then all of a sudden a friend arrived who I used to work with in theatre. She had come to take me. It was so strange. Almost all of the staff were ones who I used to work with. From the lady who collected me, the scrub nurse, my surgeon, and my anaesthetist. I was in the anaesthetic room for a while. I was really nervous about the block, but it was fine. I diddnt feel much at all. Once that was done I dont remember much. Normally I remembered the bit just before I went to sleep, but this time I diddnt. I remember waking up though.

Just after my surgery. Back on the ward.

I woke up in recovery in what I can describe as absolute agony, but with itchy toes too! (Strange considering they were no longer there). The block had worked on half of my leg, but not the other half. I was told this may happen. (I should know by now, that if there is a complication, I will probably get it!). The recovery nurse was also one of my old nursing friends. She was great. The anaesthetist came strate away and put up a morphine pump. This helped a bit, but not much. It made me sleepy. But id been living on a high dose of morphine for years leading up to this, so it was not very effective. I spent what felt like, forever in more pain than I thought possable. The doctors and anaesthetist coming in and out of my bed space. They eventually took me back to the anaesthetic room, and did another block. But this still diddnt help. I was still in alot of pain. My wife took a picture of me when I was quite bad. (As you can see below. Not my best look!). That night was just awful. Doctors were coming in as my blood pressure was really low and my heart rate high. This was mainly because of the pain and morphine. Alot of that day was spent in pain. I eventually saw a lovely anaesthetist who decided to do an epidural.

Before the surgery I was given the option of a block or epidural. I opted for a block as I felt that the risks of epidural were too high for me, with the fact that I seemed to get complications with every surgery. But after spending over 24 hours in writhing agony, I quickly changed my mind. I just wanted the pain to go. So back to the anaesthetic room I went.

Not too flatering, but this was when I was in alot of pain!

I felt the pain ease after a few minutes. I was so much happier. I still had pain, but not as much. So, this is how I spent the next 5 days. Which is the maximum amount of time that an epidural can stay in. The doctors had to keep topping up the epidural as I was still in alot of pain. But it was gradually easing. Then the day arrived for my epidural to come out. I was warned that one of the side effects was something called an epidural headaiche. I diddnt think much of it at the time, but of course, in true Lexi fashion, 12 hours after the epidural was removed my head was killing. It was unbearable. Id had migranes before, but this was far worse. I kept vomiting every time I moved. No pain medication helped. So again, I was a conundrum. Nurses and doctors kept trying their best to help, but nothing did. It did takethe focus off my leg though.

So I spent over 24 house writhing in agony, again! Then eventually a nurse put up IV paracetamol, and I was given an anti sickness injection, and The pain went. We will never know if it was this combination, or it was just time for it to end, but end it did. Oh my goodness, I was so happy. The next morning, the physio came and got me out of bed and I wheeled myself in the wheelchair they had given me, to the cafe amd back. I thaught Id go for a coffee. But then disabled life showed me my 1st limitation. I couldnt reach the bloomin cups! So I settled for a 7up. The sense of achievement was just amazing. I was mobile again, and really happy.