Saturday, 10 August 2013

My Tonsillectomy Recovery Journey (age 33)

*** Warning, some of the below is pretty gross, only read if you need to! ***

They told me it was going to be bad.  For me it was bad, worse than quinsy and worse than childbirth, mostly because the intense pain, weakness, dehydration and nausea went on for so long, followed by weeks of discomfort and recovery.  I did have some complications, but even so, the whole process is incredibly hard even without that.  I would of course do it again if I had my time again, as the thought of multiple quinsys popping up in my life is too horrible to think of.

Brace yourself, make good preparations (see survival list below), keep your diary clear, and manage expectations re work and kids, as full recovery could easily take longer than 2 weeks.  This site was pretty helpful too:

Day 1 - Much better than expected.  Very nervous before the op, but relieved to wake up in recovery quite woozy with blurred vision, but not in pain.  Spent the day drifting in and out of sleep, happily sipping water and even eating digestive biscuits.  Discharged from hospital at 4pm.

Day 2 & 3 - Pretty easy days, eating a little and staying hydrated.  Kids out of the house, so drifted off watching Jonathan Creek DVDs.  Nervous about coming off pain medication the next day, to try and breastfeed Minnie again.  Throat covered in white scabs.

Day 4 - Decide to come off pain meds a bit earlier, seems manageable, but noticably more discomfort.

Day 5 - More painful, happy to feed Minnie again, but my milk doesn't fill her up.  Very uncomfortable, feeling weak and sick from not eating or even drinking as too painful.

Day 6 - First scab comes off.  A little bleeding and then v painful, mostly ear pain.  Makes me feel sick when I feel the scabs half off  and falling down my throat.  Lots of gargling.  Hurts a lot to even sip the water I need for my pills.  V little eating and drinking.  Decide to go back on pain medication and put Minnie on formula.  After all, my breastmilk has little nutrition in it at the moment.

Day 7 - In the night I realised that ice still helped, so started munching on ice cubes (easier now back on pain meds) and got the ice pack out.  I also ordered a slushie machine for express delivery, figuring that even if I didn't use it, Penny would enjoy it.  Scabs coming off regularly when I rinse, leaving behind red skin which stings for a while, despite the pain meds.  Managed to drink a whole glass of water before bed, can't imagine how much my body needs it.

Day 8 - Dry stingy throat on waking up, but my slushie machine arrived!  So weird how even water hurts, but shaved ice doesn't in the same way.  Had a quick look at my throat, lots of white scabs still to go, some sore red skin from where scabs have come off, some dark clotted-looking bits.

Decided to go to the docs, as the pain is still too much and stopping me from drinking.  I could barely open my mouth for hr to see inside, and explained how much pain I was in.  She was very sympathetic and said/did a few helpful things:
- Extended my dihydrocodeine
- Extended my antibiotics
- Put me back on ibuprofen too
- Prescribed paracetamol suppositories (the idea being that there are fewer painful pills to swallow, but no pharmacist had them in stock!)
- Recommended ways to stay hydrated, such as a cold compress on the forehead, chewing a wet cloth.

Basically I just need to get as much water in me as possible so my kidneys don't shut down.  After paracetamol and ibuprofen, am able to down 2 glasses of water.

Just before going to bed, I get a small bleed which is stopped by using an ice pack and gargling ice water.

Day 9 - A painful day, trying to get painkillers down, possibly due to the bleed recovering.  In the afternoon, manage to get enough painkillers down me to drink some water, and drink a little milk with honey.

In the evening, started spitting out lots of fresh blood, followed by coughing up a large blood clot, around the size of a large brazil nut.  Decided to go to A+E, given the out-of-hours doc said there was a risk of infection, and I spluttered up another couple of clots whilst waiting at the hospital with my brother Andrew.  Not pleasant, but as each one came up, my throat felt noticably looser, more flexible and less painful.

They decided to keep me in at Guys so the ENT docs could look at me, and to make sure I wasn't going to choke on anymore clots in the night, though they seemed to think they had all gone by this point.  I was given antibiotics and saline on a drip and shuttled over to Guys.

Day 10 - In the morning, my throat was very painful, so they gave me a small amount of morphine, which just seemed to send me to sleep.  Steroids, paracetamol and antibiotics were all put through my drip, so by the afternoon I felt much improved, to the extent that I ate some soup and jelly.

It seemed what had happened was:
- The oral antibiotics did not kill the infection I had
- The infection caused clotting
- The clots made it excruciating to eat and drink
- The lack of hydration and nutrition encouraged the infection

So, it took getting rid of the clots and some IV antibiotics to properly get rid of the infection, along with the steroids to reduce swelling.

Day 11 - Feeling even better, even after no painkillers overnight.  Managed to have a little breakfast and lunch before being discharged with additional antibiotics and painkillers.
Back home and after a long nap in the afternoon, coughed up lots of white scabs which were coming off, not nice!  But that also felt better afterwards, and it seems this is part of my mouth getting back to normal.  Took me ages to eat a small bowl of mash and a small bowl of custard for dinner.

Day 12-17 - Coughing up plenty of white 'mashed potato' style white gungy expectorate.  Voice improving, but jaw and throat aches badly if I talk too much.  Eating soft foods, jelly, custard, mash.  Can't bear acidic fruity things as they sting.  Milk goes down well, but I feel it makes me more mucasy.  Throat looks pink and much improved, with only some white scabby bits remaining,  My main concern is that my uvula feels large and low, and that the opening to my oesophagus is not symmetrical.  Presume this is a reason for my discomfort while this (hopefully) settles back to normal.

Day 18 & 19 - Finished antibiotics, ibuprofen and dihydracodeine.  A bit of a change, voice improves, can eat a little of the dinner everybody else is having, if a little chokily.  Start giving Minnie a couple of breastfeeds, don't want to do more till my nutrition levels are better.  Not getting much joy from food and drink, like my taste buds have been scared into submission.  Discomfort in the night stops me sleeping, especially as drinking water in the night feels unpleasant.

Day 20 - Voice improved again, feeling less need to hack up 'mash potato' style expectorate.  Even decide to skip the evening paracetamol, as decide I am more in discomfort than pain.  Eat toast, noodles, jelly, chicken and rice.  I weigh just over 10 stone.  Not sure what I was before, but 11 and a half pretty likely due to pregnancy and breastfeeding.  Water in the night is a little better, possibly due to less throat gunge.

Day 21 - The first day I hit anything resembling normality, and without any painkillers.  Still a little gungy, and achy when I speak too much, but can eat and drink plenty (if a little slowly) and energy levels returning.  Hallelujah!

Day 22 onwards - Gradual alleviation of achyness, tightness in the back of the throat, ability to eat whatever I want.  Back of throat still asymmetrical, I wonder if it will ever be symmetrical ever again.

Adult Tonsillectomy Survival Kit
  • Common sense - If you are bleeding more than a little bit, or cannot eat and drink at all, visit the appropriate medical professional, as this is not a normal recovery.
  • Ice - For chewing, adding to water, ice packs.
  • A slushee making machine - Sounds like an indulgence, but shaved ice can be less painful to swallow than water.
  • Ice pack(s) - To cool your neck and ears, stop swelling, ease pain.  Some people also feel heat packs helped, at some stages.
  • Chewing gum - Helps with ear pain, and keeping you swallowing.
  • Painkillers - Take all that you are allowed for as long as you are allowed, it will enable you to eat and drink more, which is critical for a quicker recovery.  Schedule when you need to take them and time them well so you are covered for times when you need to eat and to ensure you have as blanket a coverage as possible.  If taking pills is painful, ask the doc or pharmacist for paracetamol suppositories as an alternative, these may need ordering in.  Stock up on paracetamol and ibuprofen in advance, as shops limit purchase quantities on such things.
  • Ice cream/sorbets - If you can manage them (I found they stuck to my throat making it sting, not nice, only helpful more than 2 weeks after the op for me)
  • Diet supplement, e.g. Complan - For when you can drink something more than water, gives you more nutrition.
  • Straws - Makes drinks easier to get down.
  • DVD Box sets - And lots of them, helps the time pass, it is a long recovery (nearly 2 weeks, in my case)
  • Babysitters - You will not be able to look after children while you recover, you can barely look after yourself.  Plan this in advance.  Do not underestimate how long you will need them.
  • A Runner - Anyone who can dash out and get you what you might need, whether a food or drink that you feel you might be able to get down or more medication, ice etc.

Thursday, 20 June 2013

A Hard Day's Night

Minnie was up all night.  She started screaming and arching her back in pain at about 5pm, and C and I took it in turns to keep her in a comfy position through the night so the other could get some sleep.  Maybe teeth, probably heat or some kind of allergy (pollen has been high).

Makes me realise how, despite so many hospital appointments, Minnie has been just as easy as Penny was at this age.

But now I remember how hard it can be when things go awry.  Teething, random rashes, unexplained tears ... and all now with a toddler too.  Though Penny has been very sweet, telling me she loves me, and being patient while we tend to Minnie's pain.

Sanity is hopefully restored today, here's hoping the heatwave tempers a little.

Monday, 27 May 2013

Normal Life

So Minnie has been home for exactly 2 months now, and she will be 15 weeks old on Thursday.

And we are getting on ok.  My body has adjusted to the many nighttime interruptions.  Penny loves her little sister, though occasionally lashes out (which is hard, but thankfully very infrequent).

We are starting to be a bit braver, going into the city just the 3 of us, but I have already learned that if I push it too far then things can get a bit wrong.

Penny is potty training, I can't wait for her to be out of nappies.  She also talks plenty, now using proper sentences "I don't want it" and she is generally easy to understand.

Minnie is smiling lots, playing with her hands and on the brink of laughing.

Our eagerness to get a bigger house with a garden is growing, but it is hard to figure out how manage it financially, and of course to figure out where we would live.  We are still very happy in South London, but countryside also beckons.  Never mind our dream to live abroad.

So we are happy ... busy but happy.  Squeezing in lots of hospital appointments, for blood, renal, heart etc, and also for blood transfusions.  Trying to fit in a little kid-free time each to do our respective creative projects, as well as spending quality time together as a family.

Time time time ...

Saturday, 30 March 2013

... and relax ...

Baby Minnie came home last Wednesday, it is a joy to cuddle up close with her so much, and a blessing that she feels so safe and comfortable in our arms after 6 weeks of sedation and hospital madness.

Although I can't hide a little sadness and apprehension at the news she has some hearing loss (moderate to severe), it is a miracle that she has escaped this whole incident with so little damage.  She is a very normal baby, very chilled out, and very much like Penny always was.  And it is great that I feel so confident with her, just keen to feed her up so she gets strong and well as fast as possible.

Now that we have had some calm, as even after we came home I spent the next day at the doctors and then at the hospital all day while she had a blood transfusion, everything seems much more sane again.  C, P, M and I had a relaxing day together yesterday, along with a visit from Gramps, Marion and Elle, and the next week hold plenty more family time as well as some form of low-key celebration for P's birthday.

Everything has been a bit mad for the last 6 weeks, and in some ways for the last 11 months what with the strains of the pregnancy.  But now I finally feel like the tight wire in my brain is being allowed to relax and unwind.  I even went for a 15 minute run yesterday, which felt fantastic.

C and P are off at Bettie's birthday party today, so I am catching up on jobs while Minnie cuddles up close to me in our new snuggly sling.  Perfection!

Friday, 1 March 2013

Our New Baby

Our baby was born on the 14th February, and she was born very sick.  It seems she had been very anaemic in the womb, which had left her short of oxygen.  So she came out with multiple organ failure, and we were not clear for a few days whether she would make it or not.

Two weeks later, she is now stable, though with many ups and downs.

So how do I feel?  Getting through the first few days was intense and emotional, and I'm so grateful for the unconditional support of a loving Charlie-Fish, the rallying of our wonderful family and friends, and the distraction of the lovely Penny.  I was happy to cry when I needed to, it didn't bother me crying in front of people, and I felt very rational about the whole thing.  Not thinking 'why us?', because indeed why not us!

But now we are in this for the medium haul, and it is hard.  Above all, it is a physical wrench being away from my baby, my sweet sweet little Minnie who is needing to be so strong to get through all these trials.  I miss her physically, and spend my days in some semblance of normal life, but aching to be next to her and to keep her close to me.  This makes me cry too, and both Fish and Penny seem to be getting used to my occasional hormonal outbursts.  They are not bad, they are very healthy.

It is also painful when I hear of any decline in her condition.  She has improved so much over the last two weeks, we felt like she was on the right road.  But now it is more complex, as Charlie puts it, 2 steps forward with 1 step back.  And each step back makes my heart sink.  And there are so many areas she needs to mend, kidneys, liver, heart, blood, brain ...

But the facade of normality has to remain, for our sanity and for Penny's sake.  The weirdest thing is that if she had come straight home with us from hospital, it would be far from a sane household, with newborn baby and toddler in full swing.  This is a different kind of madness, so unexpected and so hard.

So, for now, I need to surf the waves of sadness that wash over me from time to time and just keep going ...

Tuesday, 5 February 2013

On Maternity Leave Again

So, last Thursday I finished work, and I don't think I realised what a drain working full-time had been on me, both mentally and physically.  I now feel like I have been given the gift of time, and even better I get to spend that time with my lovely bundle of Penny, exclusively even until Baby 2 (Fidget) comes along.

So sanity reigns, I have the time to bake cakes, cook good food, go for walks in the park and see my NCT friends ... all of which seems to good to be true.  I am sure when baby arrives life will be demanding in a different way, but for now it is good to take a deep breath and enjoy.