Washing basket empty, tumble dryer and washing machine going like the clappers kitchen cleaned top to toe, bathroom scrubbed, an excited little girl (and mummy too) it must be Christmas . With that, it’s time to say that’s a wrap.
I’m signing off for some Christmas cheer (once the housework and deep cleaning is complete of course) to spend some quality time and be fully prescent in the magic of Christmas with my little girl who is starting to understand the magic of Christmas and all things Father Christmas this year. She is growing fast before my very eyes. I will only get a Christmas with her this little once, I want to be there for every second of the magic of Chrismas.
Its a miracle this year that I’ve kept both of us out of hospital in the lead up to the big day,I think we both certainly came close, me with my leaking head, and my little one with her asthma and chest, how we’ve avoided it I don’t know.
I am feeling blessed to have this Christmas at home with her and my parents again as planned, as with every year I spare a thought and a little love for those parents not fortunate enough to be home for Christmas, with poorly little ones in hospital may your Christmas be as bright and magical as it can be you are not alone or forgotten.
I am equally feeling blessed after a very unexpected knock at the door yesterday afternoon (my parents were here, only reason I knew someone was at the door). I opened the door to find a lady, and a man stood on my doorstep. “Are you Bethan?” The lady asked.. yes, I am. Can I help? I ask slightly cautiously. “Oh hi were from (insert name) Church someone has nominated you for a blessing box, this is for you.
The man then hands me a very large box full to the brim with food, careful you will need two hands he instructs. He wasn’t joking… I’m stunned and thank them profusely.im then handed a large bag, and I’m told, ” These are for your daughter for christmas.” im doubly stunned. The bag is absolutely full of toys and gifts for my daughter.
I’ve always been a big lover of christmas and have always said christmas is about giving and not receiving, not expecting anything. It feels strange to be on the other foot. Usually, it is me that likes to do the giving. It’s not usually me on the receiving end. Being on the receiving end makes me realise what an impact and a difference it makes when someone does receive something you give. What the person who nominated me (still yet to find out who) and the two representatives from the church don’t know is just how much I’ve financially struggled this year, especially in regards to food. To receive something so unexpected like this and right in front of christmas really does mean more than words can ever say or describe.
We have been blessed with a sack full of toys from our local community hub, vouchers towards food shopping from nursery, and a regular food parcel from another church with added christmas treats. We truly have been so blessed already. All this makes me want to do is give more and harder as soon as I am able. I will absolutely be repaying this to another family in need or a single parent and child household because it really does make a difference. I will also repay the churches, community hub, and my daughters’ nursery everything they have done to support us this year, and this Christmas hasn’t and doesn’t go unnoticed.
By giving a little ,it’s given a lot to myself and my daughter. My daughter wasn’t going without this Christmas. Don’t worry. I would never allow,I’m fairly confident that Father christmas has fulfilled her wishes this year and has worked hard all year to ensure it’s possible. For me ,all I want for Christmas is my daughter, the little girl who is my whole word,my pride,my joy, and the true magic of Christmas and every day .my second wish is for everyone to have a happy, healthy and bright Christmas however you spend it
Right now, it’s time for me to, as my daughter asks for me watch a Christmas film with her. There are still bags to pack before I drive home for Christmas and family time calls.
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Merry Christmas from my house to yours. See you on the other side of Christmas 🎅
I know I’ve already written about the first two weeks of recovery, however I am of course still recovering but it’s now getting to a point where there isn’t necessarily something to talk about each day or much to update on, rather than writing “nothing to report”, “No change” or leaving huge chunks.
I’ve decided I will write any remaining recovery updates on this blog,so keep checking back in case anything new is added. I just feel this way it’s easier and keeps everything together rather than long, gappy blogs or lots of individual ones, especially if there’s only a couple of sentences or a short paragraph to discuss.
15th December 2023- Day 18
We have a little bleeding this morning – only tiny amounts, more like the bleeding you would expect from a graze, as opposed to pouring (its certainly not a repeat of day 5 post op of BAHA removal) , still some numbness but the majority of feeling has returned to normal, just a few small patches that remain numb ,but is definitely wearing off as I have some sensation returning
16th December 2023- Day 19
Tonight, I’ve had a fair amount of clear/ yellow fluid (serous fluid) coming away from the suture line I’m not sure exactly where ( it’s a bit difficult to see the side of my head, however I have posted a video onto my Tiktok which shows the exact location very clearly. The area looked red when I attempted to look in the mirror. The best picture I’ve managed to get is this one.
Just to show the colour of the serous fluid upon dabbing , I thought the Christmas tree might add a little festivity to an otherwise perhaps not quite so pleasant picture.
I think everything is OK, but I’m certainly keeping an eye( I should say a camera lens) as best I can to monitor the situation. I will be monitoring the discharge, too. A few people have said I need to be seen as my body could be rejecting or an infection. Whilst yes, both are valid ,honestly, I have no other signs or symptoms of either. I feel like this is a similar situation to when the BAHA was removed where after having got on top of the post-operative infection. My body began trying to overheal . I think this is very much that.
17th December 2023- Day 20
Today ,the serous fluid has very much continued. However, there is now some blood coming away, too. I’m still not too concerned about it. My gut instinct is telling me to ride this out, that everything’s OK, and that things are healing and doing what they need. That said I’m very much keeping an eye,at this moment there isn’t a great deal I can do with it being a weekend, I don’t trust 111 to understand and they will most likely send me to my local A&E who will then get me to see their on call ENT.. No thanks ..
I of course have no problem in seeing ENT or seeking medical help, however after the last time I had to go via A&E and saw an ENT doctor at my local hospital, it was a total disaster, the first night I got sent home fobbed off nothing was wrong, despite the BAHA abutment being swollen like the top of a thumb and bright red like rudolph the red nose reindeer, with very clear skin encroaching. A few evenings later I returned and the diagnosis ” oh you have metal stuck in your head how did you manage that and not notice” like I had an accident and was just oblivious to there being a titanium abutment sticking through my skin, they then wanted to “just pull it out”.. yeah.. I came very, very close to needing emergency surgery at UCLH days before Christmas due to their negligence.
20th December 2023- Day 23
For the past two days, there has continued to be serous fluid coming away from the suture line, all from the exact same spot. Today I perhaps a little naughtily have removed two Stitches myself, I only set out to remove one, it had been partly dangling for a while now with no movement I’m 99.99% sure this where the serous fluid had been coming from. I actually ended up removing the wrong stitch, and a fairly reasonable size stitch came out instead .Whoops, in fairness, I didn’t apply much pressure or force for it come away, still knotted. Once this one came away the one that had been a little irritating for a while became very loose, practically falling out,though it still needed a slight helping hand, I literally pinched the end and it fell out into my hair
I had expected some fluid pr bleeding,but nothing so far since its remained serous fluid free. I defintely think these Stitches were the culprits.
Please note that I don’t advocate, recommend, or condone removing your Stitches yourself. Please seek medical advice and get a medical professional to do it.
The little tiny one on the left was the one that had been irritating me for weeks.
23rd December 2023- Day 26
Today I had a shower and hair wash (I know very exciting stuff) I’ve continued on with the banana food hair masks,shampoo and conditioner as my hair feels sp much better and healthier and for longer too. I applied the hair mask once my hair was wet and left it for 3 minutes before rinsing. During this process, I noticed all of the scab completely came away from the suture line. It felt so nice but equally bizarre to feel. I assumed I may get a little serous fluid come away and was extra careful when drying and straightening my hair. For the 3rd day running.. no serous fluid. I definitely believe those two Stitches were the culprits as I’ve had no issues since I removed them, hence no updates the past couple of days.
OK, I spoke too soon, this evening whilst updating my blog. I’ve somehow managed to catch the suture line and ,yes you guessed it.. We have had a lot of serous fluid discharge that has lasted pretty much all evening into the early hours, along with some bleeding
27th December 2023..
I thought we were onto something as the serous fluid/ discharge had stopped.. however, I awoke this morning .Yes, you’ve probably guessed it.. to discharge on my pillow,not an awful lot, though, to be fair. Upon feeling the area, it felt dry, so I can’t identify exactly where it had come from or how long ago, but I’m guessing a while given that the area was dry.
31st December 2023.
With minutes to go until 2024 officially begins, my head has decided to get excited and join in the festivities with a nice little leak .. my gut says it’s not going to stay in 2023 and is going to come into 2024 with us. Is this a sign of how the year is set to go already? Who knows, but either way, I’ve got this, and we will solve this little blip in the road.
3rd January 2024
Well, it’s been a few days since my last update, but I’m back.. because.. i can’t have you missing mem.tonight. We’ve had a fair sized bleed from the suture line. Totally random and out of the blue after brushing my hair (I’m still super careful of this area so I’m fairly certain I didn’t catch it, but there’s always that possibility that I did) all of the thick scab came falling off as though it was paper thin,of course scabs can bleed so this could have added to the bleeding.
8th January 2024
Its been a quiet few days so I had hoped perhaps the bleed on the 3rd was needed to clear whatever the problem was abd to get it out of it’s system, turns out that wasn’t the case as just before I went to get into bed I felt a little familiar friend. ..
10th January 2024
Hlo again, I was correct I’m my prediction before Christmas this is very much going to be a 2024 issue,I’m still fairly certain it needs corterising as again tonight before I went to bed my familiar little friend decided to make an appearance.
17th January 2024
Well, we had a good run.. it’s been 7 days, and I genuinely thought whatever was going on had resolved… I’m here again,so .. you’ve probably already guessed ,but that’s not the case. I noticed late this afternoon and again early this evening that there is some fluid leakage. Not a huge amount to be honest but its definitely leaking again, thankfully I’m back at the hospital tomorrow, so I’m hoping I can get a doctors input (If I’m honest I’m hoping I will be able to see Joe, seeing as he failed to attend my last appointment due to annual leave 🤪 . Seriously though I’m hoping I can see Joe as I fully trust him with my head due to his caring nature and his wealth of knowledge and expertise) if I’m honest I don’t know what’s going on. I partly still wonder if it needs cauterising, no pain, or anything, although I’ve noticed my head is getting a little sore from the processor,so it could be linked.
20th January 2024
A small amount of blood ( I know spicing things up a bit , we’ve not had a bleed for 10 days now) and a small amount of yellow fluid from the bump this lording. Again, I’ve not had yellow fluid since probably before Christmas as it’s typically clear. It’s the weekend we’re going all out spicing things up.. I spoke to audiology about it on the 18th. Joe came to have a look and has confirmed what both audiologist have said ,no infection. He has, however, said the bump is very dry, so it could be because of that and to keep moisturising it or using something like vaseline on it. Joe essentially confirmed what I’ve suspected , just my body healing slower than expected ( like it did withbtge BAHA removal,I was told 1 week ,it healed about 3/ 4 months later)
Today is my final universal credit meeting of the year. Honestly I’m excited to get it done and out the way, It’s one thing I absolutely hate having to do, I think it’s the shame and stigma attached to job centres ,not only that but of those claiming benefits. Never in a million years did I ever think I would need or accept benefits. It just wasn’t me. I couldn’t,I wouldn’t. Again, it stems from the stigma and shame .
Reality is things happen, and we all need help from time to time, and that’s OK. This isn’t a perement or forever thing ,it absolutely is temporary measures until I get back up on my feet again,and I will.
Today’s meeting took a matter of minutes, although I saw the same lady as last month, Danielle.Today I massively struggled to hear once I had arrived having battled the wonderful British weather of wind and rain and toddler who absolutely refused to leave the flat this morning due to said weather (can’t say I blame her), a battle with getting said toddler in the pram at the realisation it meant the rain cover was very much coming out, a lot of battles of wills to keep said rain cover on the walk there. I then battled the door to the job centre with the wind and trying to get the buggy in. Typical fhe one and time nobody comes to help.
I checked in with security and was instructed to take a seat. Within a minute or two Danielle comes over to the waiting area and calls out a name. I can’t hear who she’s calling, however there’s only myself and one other person ,a fellow mum sitting with a pram she doesn’t move. I assume it must be me, so I get up and begin to walk over to her especially as she says hello and begins the pleasantries… that is until she says “nice to see you again, Eloise, it is Eloise isn’t it?” The security guard then informs her I’m not Elosie, I’m certainly not.
Slightly embarrassed, I walk a few steps backwards with the pram to take a seat again, apologising as I do. Oh no, no, it’s OK, my appointment is running late. You can come over, it’s OK. I’ll just swap you both around, Danielle kindly tells me and informs the security guard to switch us on his list.
I follow Danielle over to the desk ,the appointment takes literally a matter of minutes ,we don’t really discuss anything new and instead recap on last months appointment, Danielle looks to see if there are any more dates coning up for the Teaching Assistant course before deciding actually we will just look at it in the new year now,so I can have Christmas off to enjoy the festivities and be present in the moment with my girl instead of juggling a toddler and an online course. It’s a struggle to hear her, and I just try to zap through as quickly as I can. I’m wet, cold ,but equally absolutely sweating from racing to get here. My daughter is not a happy bunny ,admittedly, she is a little under the weather and just wants to be home in the warm.
At the end of our meeting, I made a mistake of what Danielle had said. I thought Danielle asked what day works best besides a Monday or Tuesday. I reply that a Wednesday works well . “Oh, I don’t work Wednesdays. Can you do a Monday or a Tuesday at all there the days I work?” Danielle asks … oohhh.. it turns out Danielle has actually asked which day works better Monday or Tuesday. I’m on fire today!
I’m told my next appointment that next month will be 40 minutes so that they can ensure they’re hitting all the things they should be. Essentially, to ensure they’re box ticking everything.. Great, I really look forward to 40 minutes of making an absolute doughnut of myself.. hopefully, it doesn’t actually take that long as I’m doing everything asked of me.
Sorry, I know it’s not a very exciting update, but I promised I would keep you updated and bring you along for the ride. Hopefully, if anything, you’ve got a good laugh at my expense, though, from a hearing point of view.
After this meeting, I headed off for another meeting in town, this time to have a discussion with someone and complete some important paperwork and forms .. all will be revealed soon. If you’ve seen my Instagram, you will already be a little more in the know as to what this could be. Yes again, my heading was spectacular… thankfully they know me and know I’m deaf so it wasn’t quite as awkward or awful, although that said the job centre know too, then again they’re still sat behind perspex and looking at a computer whilst speaking! The second meeting very much were not, instead ensuring they had my attention, sitting on my left and speaking clearly and facing me when doing so
I promise that once everything is that little more guaranteed and set in stone, I will reveal all.
It won’t shock you to know that my little CODA (Child Of Deaf Adult) is also bright as a button. I’ve never hidden my deafness from her because I feel honesty is the best policy, and it’s just me and my girl, I don’t ever want secrets between us or anything to be off the table.
My bright little button has recently, earlier this month, discovered what deaf means.. what do I mean by this?..
Take the 6th of December for example, after a fantastic first parents evening.I wanted to reward and encourage this behaviour to continue on, I decided after collecting her, to surprise her by walking into my local high street where I allowed her to chose any toy of her choosing ( I only live in a small town where the only places to buy toys is Poundland, The works or Card Factory, or charity shops) I knew whatever she chose wasn’t going to be crazy expensive.
My daughter chose a soft fairy doll from Card Factory as we approached the till to pay she spotted some sharing size bags of haribo asking “mummy I have sweeties pweeasee” my daughter rarely asks for anything. I obliged, saying yes, she could choose a packet. She chose the fizzy, tangfastics.. strange child.
Once out of the shop, I explained to her again why she had got the dolly and sweets telling her how proud of her I was that she’s kind, polite, and generally with how well she’s doing. I opened the sweets and gave her a small amount, telling her she could have more another day. ” OK, thank you, mummy,” she replied.
Skip forward a few hours later. My daughter was incredibly tired and asked for a nap, laying herself down on the sofa she wriggled for a while. I asked if she wanted to sleep on me, as this often works well I think it stems from when she was little and she always contact napped as it was the only way she would ever go off. “No thanks, mummy,” came her reply . A few minutes later, she asked if she could sleep on her bed. Of course, this was fine.
I remained in the lounge,I could vaguely hear her and thought to myself if she doesn’t settle in a couple of minutes I will go check on her. All went quiet so I perhaps stupidly assumed she was asleep so I popped on the kettle and picked up a book.
Around 30 minutes later, I see a sheepish little face peering around the lounge,I would say door.. but I’ve actually removed my lounge and kitchen doors, so perhaps more accurately, I saw a sheepish little face appear round the doorframe. I didn’t think anything of it and asked if she was OK. ” I need a wee wee” came the reply, ok off you go then ,do you want help? ” OK, mummy ,no, I do it,” she responded.
After her wee I asked if she was going back to bed ” I awake now, I play my toys now?” My daughter asked. Perfect, I could tidy away the washing that needed doing. I hadn’t wanted to do it while she was asleep in case of waking her.
I went into my bedroom to find my bed in a mess, huh that’s strange i don’t recall leavung it like that I thought . I begin tidying it to find my daughters nursery bag is wide open, medication has been taken out (thankfully not opened), and my purse is out and sticky? What is going on? I then realise my purse has been emptied there is pennies , my bank card, loyalty cards , organ donor cards all spread out across my bed, these too are all sticky. I’m still not connecting the dots.. suddenly I spot the culprit and the penny drops. I realise exactly what’s happened..
The once sharing size bag of Haribo Tangfastics is no more… the bag has been ripped, and there is a grand total of 4.5 sweets remaining.. it appears my little CODA wasn’t quiet because she was asleep,instead, she was happily unbeknown to me munching out on sweets in the very next room. Not once did I hear her come out of her room, nor my bedroom door opening (it’s always shut unless I’m in there) nor did I hear her climb on my bed open her backpack or any rustling or emptying of bag contents..the sheepish look,suddenly makes an awful lot of sense…
As I entered the lounge I didn’t need to say anything my daughter confessed it all. “Mummy sweets in your room” “sweets in your room. I sorry. Sweets gone now I eat them all . I very sorry”.
I told you this kid isn’t daft, she knew exactly what she had done ,that I had said to save the rest for another day, and what she had done was a bit cheeky. Did she get told off? Absolutely not. Did Mummy learn a lesson- Absolutely!! Hide the sweets and check on a quiet child that, or a child you can’t hear. How she wasn’t sick I have no idea, all I will say was bedtime was …ermm.. Fun, to say the least 🙈🤣🤣 to top it off a certain little someone came in later telling me, “Mummy look look you got Gabby Gabby (doll from Toy Story 4) in or room”… yupp, she had for a second time gone into my bedroom undetected and gone through my draws and found a Christmas present. Safe to say it’s no longer a Christmas present.
I rightly assumed this wasn’t the end of antics to come, as exactly 1 week later .. antic number 3 occurred…
I tucked her into her own bed and checked on her a short while later (lesson learnt from Haribo antic) she was absolutely fine and was sound asleep.
Imagine the scare I had when I went to get changed into my pyjamas a short while later, to turn around and jump out of my skin to find there was a little person shaped bump under my duvet, a certain little someone had snuck into my bed, even bringing her pillow with her. I didn’t hear or suspect a thing. how she’s managed to for a second time in the space of a week to get out of her room ,open my bedroom door, and hop into my bed totally undetected ..
Oh and she’s found a further 2 Christmas presents (admittedly my fault though as I had left them on my bedroom floor as I needed to get some more wrappimg paper out of the cupboard, but had got distracted and hadn’t the chance to wrap them yet) yes I know she had seen them as they had been moved and clearly played with (thankfully she didn’t mention them in the morning so they’ve been wrapped and hidden for Christmas)
How she mangages such wizardry I’ll forever be stunned and in awe of . It’s absolutely beyond me 🤣. Who knows potentially all being well with the osia after switch on? I may be able to catch her out.. then again, moments like tonight, I think I may just have to turn a blind ear, too (is that a thing, or should it be a deaf ear?!) 🥰
She woke a short while ago, and I asked her what she was doing. “I cheeky mummy can’t hear me, I sleep with you.” Well, I can hardly say no to cuddles 🤣🥰 it appears my little CODA has connected the dots of “mummy’s poorly ears” and “mummy deaf. “
I knew from this moment that going forward, there absolutely is more CODA antics to come and lots of figuring out what else mummy can’t hear.
Antic 4 happened just 6 days ago , just under a week from the last one.. this one again took place at bedtime when I again assumed she was asleep. This time, I knew she was in my bed, so there were no surprises in that respect.
I wasn’t daft I knew I needed to check on her after Haribo munching afternoon . At first I just popped my head around the door and could see she was asleep, as I went to retreat back to the lounge something told me i needed to actually physically check on her.
I walk up to my bed to find her fast asleep… with 49.. YES, FOURTY NINE books around her, now I’ve always been an avid book lover and reader. I’m all for reading and books, especially before bed, but 49… that is a bit beyond me .. again, I didn’t hear her tooing and froing from her bedroom and my room opening doors ,or carrying all these books backwards and forwards.
My daughter didn’t stop at 49 books.. oh no.
I also found a small plastic fairy doll, 3 cuddly toys, a single mitten ( as you do), and a party bag snake in the bed with her .(we won’t mention the books all over her bedroom floor that clearly didn’t make the cut tonight or why half her wardrobe is now lying on her bedroom floor)
Though I laugh, and I know this is typical toddler behaviour, she’s learning boundaries and what she can and can’t get away with, something all toddlers go through . Yes, it’s funny, and I absolutely do laugh, but equally, it’s not.. I laughed the first few times, and even now, I am writing all of these antics up . I can’t lie ,on the flipside, it also upsets me. I can’t hear these things. I’m totally in the dark. I’m losing further sounds as I could previously hear her, even if vaguely, whereas now.. nothing.
This scares me as often i don’t know until sometime later what she’s been up to. A whole can of worms and thoughts are opened, What if something bad were to happen?
What if she got out the front door? (She can already undo the lock so I have to always ensure the chain is on ,thankfully still very much out of reach but what about when she can or in her teenage years when she wants to sneak out If she’s grounded or told no?
What if she got stuck somewhere? Especially now she can open doors
What if something fell on her? It doesn’t take much, toddlers ,at least mine anyway likes to think she can do anything and can be a bit of a climber..her latest thing is to jump off the sofa when I’m not looking. A few times I’ve caught her doing this now
What if she fell unwell in the night and I couldn’t hear it happening? What if she fell out of bed? Bangs her head? Is sick and choked? What if she has an asthma attack and I don’t hear it?
Moments like these definitely make me think, “Hurry up, osia Activation.” she may be winning for now, but mummy’s determined to catch up.. fingers crossed, osia helps mummy start winning some points and catching her out 🦻😏🤞
As you may have guessed from the title, today was an audiology appointment day (not for myself for a change)
For my daughter ..( This is her 4th hearing test, I think) .. ongoing since the newborn hearing tests.it was agreed before birth that my unborn little ones hearing would regularly be monitored throughout their childhood.
At the Newborn hearing test my daughters right ear passed very quickly, her left didn’t pass until the last split second( literally as they were about to remove the ear piece) I was told they would see her again in a few weeks time..she then got lost in the system until last year.. After a lot of battles, I managed to get her an appointment last year.
Last year, they couldn’t get any accurate results. Essentially, they didn’t know one way or the other whether she could hear or not .The audiologist we had seen blamed me for “distracting her.” I hadn’t said a word besides reassuring her when she had become anxious. I think what they forget is that it can be a daunting experience, especially to a young child who has no idea what is happening or why. I’m 28, a bit of a pro with hearing tests, and yet I still get nervous. What the audiologist so clearly failed to understand is that I’m deaf, half if not more of the sounds that were played for my daughter I couldn’t even hear, so how could I be encouraging her to respond to something I didn’t even know about?
6 months ago, she had a follow-up appointment. Strangely enough, I booked with a different audiologist within the centre. At this appointment, my daughter was diagnosed with left sided glue ear and a mild loss. My daughters right ear was fine. We were booked in for a follow-up for 6 months’ time for a reassessment and to check the status of her glue ear and if it had caused any lasting hearing issues.
Today, we went for that retesting.. I was told the glue ear in her right Has gone… Turns out my daughter had glue ear in both ears when we last attended, which I wasn’t informed or aware of, despite it being the same audiologist that we saw 6 months ago.
Her left ear, however, still has the glue ear, and we were unable to get any accurate recordings as to whether or not she can hear that side. Partly because she didn’t want to play ball . At first she complied placing bears into the pot when they “spoke” to her (she has to place a compare bear to her ear and place it in a pot when it “speaks, the audiologist plays a sound) Very quickly she got bored of this. We switched it up making the bears jump/ pushing the bears off the arm rest of the chair into the pot when they spoke, again this didn’t hold her attebtion for more than maybe 3 bears.
We switched the game to putting play biscuits into a biscuit barrel when she heard sounds, again this didn’t keep her attention for long.
It was decided she is probably old enough and advanced enough to tolerate a proper/ standard hearing test using headphones. The audiologist placed the headphones onto her litle ears. For a minute or two, she wasn’t suee. However, she soon settled, and it worked… well, at least for a while before again losing interest.
Audiology have said they want to see us again in 2 months’ time to repeat the tests and decide from there as to what we do. The aim is we will get some conclusive results, either yes she can hear and she will either be monitored on a regular basis whether that’s six monthly, yearly or maybe even two yearly, or whether she has some deafness or total deafness and we need referring elsewhere for grommets or hearing aids etc.
At this moment in time, with where we’re at ,the audiologist has said that she doesn’t see any point in referring us onto hospital ENT/Audiology teams as of yet, as she explains the hospital ENT and or audiology teams wouldn’t be able to do anything that they’re not already currently doing within the community. The second reason she gave as to why hospital won’t do anything at this point ,is because its unilateral … I know!! This is torally wrong information, I’ve lived first hand expirence of this.
The audiologist continues on saying how they possibly won’t do anything or place a grommet at this stage either because “it’s just unilateral” that statement in itself.. honestly! I didn’t let rip,I held back ,only purely because we don’t have conclusive results, and we’re back in February. Believe me, if we had solid answers that had said she was deaf, i wouldn’t have held back in why it’s not “just unilateral.” Believe I’m ready to go the distance with it ,if and when needed. .. It’s frustrating as I know only too well the impacts unilateral deafness can have. I had hoped by now that all ENT and audiologist would be up to scratch on that.. clearly not.
We keep going and riding this wave. What will be ,will be. I certainly won’t back down in ensuring she gets the correct help and care that’s needed, unilateral or not. All hearing is important.
I left it a few days before telling my parents. Partly because it wasn’t something I wanted to discuss over a text message. I wanted it to be face to face, also because I know my parents don’t understand “this deaf stuff”
Mums response… ” well she can hear , there’s no problem with her hearing ,her speech is fantastic so there’s no issue she’s fine” I get that my mum ,and my dad too of course wants everything to be OK, of course I get and respect that. I, of course, do, too.I do have to point out , though deaf people can speak, have good vocabulary, and can still hear. It doesn’t mean to say that their deafness isn’t real. Deafness is a spectrum. I can’t lie, Mums comment kind of annoyed me a bit as I felt …erm hello deaf daughter right here, how am I communicating with you? Oh yeah, I speak , I can hear you and still use a range of vocabulary, and we won’t mention that I always got marked highly in my signing exams for using a wide range of vocabulary.
Better yet…. When mum told dad, she said to him “that’s what she had” (referring to My sister) who apparently had glue ear for years.I knew she had lots of sets of grommets but never knew why until today. Mum said about it today and how my daughter must have got it from her and how my sisters hearing was /is fine( we won’t mention that she actually asked me if it was, like im an audiologist and would know) essentially saying because my sisters was my daughters is/ will be fine too. I totally respect she’s trying to reassure me, honestly, though if anything, it just makes me annoyed ,as it shows how little seriousness she takes about it and how little she understands on deafness.
Honestly, I felt like saying well how do you think I coped/ cope with one ear?” I still do what everyone else does and can do.. I just struggle, but I don’t say anything or make a fuss,I just quietly get on with it and battle through.
I totally get that my parents want my daughters hearing to be fine, however at the same time, it implies a lot, things that it really shouldn’t do.
There’s times none of us can understand or know what my daughter is saying – yes, it could be a toddler thing, but equally, it might not be. It could be something. I don’t know how many times this afternoon she kept trying to disclose something about another child in nursery , all three of us kept getting the name Daisy , Darcey ,anything Da instead the name actually starts with a J. Another word she can’t say is frog, she says “pog” yet she can say longer/ bigger or more complex sounding words such as amazing, nutcracker, speak in clear 4-5 sometimes 6 word sentences without any issues whatsoever. Over the last couple of days before today’s appointment, she’s begun to say Dummy, previously it has always been “ummy” or “mummy”
Comments like I’ve recieved today just makes things all that much harder for me, not only navigating the unknown with my daughters hearing, but also with my own deafness, to some regard it pushes me further into myself and isolation. If my parents who have known me my whole life don’t understand or get it, how can I expect anyone else to? Comments like these don’t help either of us whatsoever.
Does it bother me that my daughter could be deaf? No, absolutely not, if she is, she is. If she’s not, she’s not. If she is, then I just want to know as early as possible to best support her and ensure she has access to help ,services, and systems needed. Things I didn’t have growing up that even reading as far back as my first reception school report, it’s so obvious, and it’s absolutely screaming, jumping off the page how much I was strugling. Yet I didn’t get access to help or support. Don’t get me wrong, my infant school was great ,and the only school that did anything.
My reception teacher started helping and putting plans in place to help me,though the only help I personally can recall isn’t until year 2 when I had a 1:1. After that, I had no support, help, or access to any support or services. I do wonder if I had how different my education would have been and perhaps from a social aspect, too. All I want is the best for my daughter and any future children. If they’re deaf that’s fine as long as I know, and they have the support and any help they need. If they’re not, that’s also great, too. I just never want to see my daughter. Any future children or any child for that matter struggle like I did and still do.
This isn’t a dig at my parents in the slightest, though, by the way. I get it ,it must be as hard for a hearing person rl understand a deaf world ,as it is for me as a deaf person to understand the hearing world and how those with full hearing hear ,what they can hear and how the world sounds to them.
Today, while having a quick coffee break between a church play group, the “mince pie and play” event is put on each December to meet parents as the majority of children who attend weekly attends with childminders. Lunch , playing pirates, fairies, and the favourite game “to infinity and beyond” with my daughter.
My daughter came up to me looking concerned out of the blue she simply asked “mummy you be OK?”- translation mummy, will you be OK? At first I was confused answering yes mummy’s OK, mummy’s just having some of her coffee then ill come back to play ” no mummy you be OK, she says tilting her head looking concerned once again.
I nust have looked confused as she came closer stroking my face before saying ” you poorly ear” “you bit poorly” then the realisation of what she was asking truly hit me…
She was asking if I would be OK because of my recent osia operation. I knew the operation would and was having a bit of an effect on her. She’s such a bright little girl that nothing gets past her.
I have to remember she too is going through this, she had weeks of myself and my parents telling her mummy was going into hospital to see the ear doctor and mummy would be staying there, then of course lots of prepping her in the lead up and on the day, she’s seen photos of mummy with her head bandage and hospital clothes, she’s video called me in the hospital knowing where I was but equally missing her mummy wanting me home asking ” mummy come home” ” Mummy come nanna and Gaga house please” “back soon?” “Back today?”
of course, she’s been with me every day since I got home ,so she’s seen it all .She’s heard it all with family and friends asking how I am, etc
When I returned to hospital Thursday for my checkup, she said things such as ” mummy no go,” “stay with me,” ” I come,” “mummy coming home?” Worrying mummy would-be going to the hospital and not coming back home that day. Lots of reassurance was needed, then that mummy was ok and would be home.
Mummy’s OK darling I tell her, mummy be OK she repears , yes mummy is OK I repeat before asking are you worried about mummy? She goes a little quiet and shy, I think this is very much the case m I hadn’t realised it until now, of course though I want to hear it from her,I dontcwant to be putting thoughts or ideas into her mind, I want to jesr it from jer so I can validate her feelings and help jer to understand and navigate it.
” Yes,” she quietly whispers, ” I scared.”Mummy bit poorly hospital.” My heart partly sinks. No parent ever wants their child to be scared, anxious, or worried. Equally, I’m proud sue has expressed herself and come to me with this. I dont honestly know how to navigate conversations like this with her, but I’m not going to shy away from it she needs to know. It’s no secret, and she’s asking.
I carefully explain that mummy isn’t poorly ,mummy is deaf, mummy went to hospital “ear doctor” she tells me yes thats right I encourage. Mummy saw the ear doctor, ear doctor did an operation on mummy ” noooo she shouts on the verge of tears” I carefully explain what the operation was explaining doctor made mummy sleepy and helped mummy, doctor made mummy a magic ear to help mummy hear you. Mummy’s ears don’t work properly. ” Mummy deaf poorly ears.” Yes, that’s right.
She seems calmer and looks at my head. ” Mummy bump.” Yes, that’s right mummy has a bump doctor do it? She asks. Yes, the doctor did it , mummy’s magic ear I remind her. I don’t want her to become fearful of doctors or hospitals. She looks at the bump and asks, ” Hurt?” No, it doesn’t hurt, I tell her. She continues looking. Do you want to touch it? I gently ask? ” Mummy hurt.” it’s OK it doesn’t hurt. Do you want to touch it? ” Mummy, help me,” she asks, giving me her hand for me to help her touch. ” Mummy, it sore?” She asks, no darling, it’s not sore. We just have to be a little bit careful of it. ” Doctor help mummy she questions ” yes doctor is helping mummy. Doctor, nice? Yes, he’s a good doctor ,he’s helping mummy, “
Doctor hurt mummy, no darling. I remind her that the doctor didn’t hurt mummy he’s helping mummy to hear you . ” doctor make mummy better” she said before giving me a big hug and an grabbing her doctors kit and coat asking to look my ears ” I be mummy doctor” she looked at both my ears saying yes mummy ooh right” (although apparently my eyes aren’t alright yet… I have no idea) before giving me a hug and going off to play as though nothing had happened.
I think conversations like this are so important i could easily have shied away and not told her out of fear of being too young. equally, what good would that have caused? Instead, it’s produced a good open, honest conversation. Her feelings have been validated, and her questions answered. I think it’s so important to be honest and open with children. They are so resilient abs understand more than we give them credit for. I didn’t expect this conversation. Yes, it threw me, but actually, I’m proud of her for initiating it and, in some ways, feel closer to her for this conversation. I know there will be many more conversations or questions asked as the years go. I may not always know how to answer or navigate them when they come, but I’ll always do my best to be honest and open
I think this conversations is important to document not only because its a first and something other deaf parents to CODA ( children of deaf adults) may expirence and pr ask ,but also for both mine and my daughters sakes as a memory ,cabd a part of our journey but I think also for my daughter as a CODA moments like these could provide her with some help, guidance and comfort as she grows and as something for her to look back on I have no idea how my deafness will affect her as the years go but whether she’s angry anxious, scared happy . Whatever it may be I’m there for her and I’m there for the ride I never want jer to feel anything is off the table ,there’s nothing she can’t come to me with, nothing she can’t ask pr approach me with. Because it’s important it’s a part of her, a part of me, a part of us.
I know for me growing up as a deaf child to hearing parents I had questions ,or even today there has been questipns I’ve wanted answers to about my childhood and about growing up with my deafness that I’ve asked my parents but rhe response has been ” I don’t know ” , ” I can’t remember it was years ago” or orher similar variants. Something I don’t want for my daughter ( I don’t resent my parents for not remembering)
look out, Joe, if you don’t look after me, someone’s on to you, and you best watch out for your job too, she’s coming for you and your job 🤣)
How am I seriously 8 days post op already?! Where has that gone?! It’s flying. It’s not a great deal to update on. I think things are still going well, and so far , it’s so good that everything seems to still be (touch wood) be plain sailing. The only thing to really mention today is that the area surrounding the implant and surgical area, I wouldn’t say it’s sore or painful, bit there’s definitely something. The way I would describe it is for those of you who tie your hair up, it’s that aching /panging feeling when you’ve had your hair up all day, when you take your hair out at the end of the day and it’s a little achey, I think that’s the best way of describing it.
There is still a small patch just above my “little ear” (reconstructed ear) that is still totally numb, no feeling at all .
Today for the first time I’ve noticed a bit of a tightness and a strange sensation in front of my reconstructed ear down to my jaw bone/ chin area- I’m not quite sure how to describe it, it’s not numb and it’s not sore or painful . I’m just much more aware of this area. I guess you could say it’s kind of like a numb feeling, I suppose when you’ve been out in the freezing cold and then you start warming up again but haven’t fully got the full sensation and feeling back. It’s more sensitive to the touch.
The inside of my ear right sided,although I can feel myself touching it. It feels more like a reduced feeling and a little numbness. The back of my ear is completely numb and I can’t feel myself touching it at all. This was also the case on day 1 and 2 ,but I assumed that was from where the bandages and dressings had to be so tight,as it then went away. I’m not entirely sure why we’re feeling a little sensitive and numb today ,but I’m guessing it’s all normal and part of the healing.
Today, I think I’ve possibly pushed myself too far and been a little bit silly. I went for a walk to do some mum-min (admin) jobs done that needed doing parcels that needed posting, swapping of library books, and collecting parcels. In total, I walked for just under 2.5 hours from mine to the library, to the opposite end of the high street, up to the other end of town and home again.
Walking like this isn’t uncommon for me. This is something I do on a fairly regular basis . I go for a quick walk, which ends up being hours. Good job. I love walking, hey, yes I do drive, but where possible, I always opt to walk.
Whilst walking , typically whilst at the other end of town to where I live. After bending down to my daughters level (I’ve swapped prams/buggies with my parents as their is much lighter, however there’s isn’t as tall as mine and my daughter has to world face ,whereas in mine she’s parent facing this caused a lot of issues and frustration for both of us, especially as I rely on lipreading) kicking on the breaks I stood in front of the pram to lipread and try to work out what she was saying, once I’d done this I stood back up and went back to pushing the buggy however my head came over very weird.
When I say weird I mean very light headed and dizzy, to the extent of having to grab on tight to the buggy, as I felt I was going to go over any second if I didn’t. I can’t lie this caught me off guard as I’ve not come over dizzy or lightheaded like this since a couple of days after the operation, I guess I’ve just pushed myself too hard ,too fast.
This afternoon I made a really stupid mistake. My dad dropped some shopping off to my flat ,my daughter went running to see what was in the bag before attempting to lift it as I followed behind . I heard dad tell her it was heavy and to leave it, but this apparently did not register with my brain. What do I do?! Despite not being allowed to do anything strenuous or life anything heavy..
Yes I instinctively without thinking, lift the heavy bag of shopping and carry it through to my kitchen, when my brain apparently decides to kick in and realises what I’ve just done and what my dad had said to my daughter … brilliant… smart move. Did it hurt? No but it did cause a feeling of a pulling sensation in front of my right ear and above the implant. Have I done myself damage, I hope not,but yes there’s every possibility I have or could have.. I guess time will tell…
Whilst cooking dinner this evening out of nowhere for approx 20 seconds, I got a random, really sharp pain across the whole of the implant area. This again caught my off guard. However, I think that’s more because I haven’t experienced any pain that I’ve noticed it more than I perhaps would if I’d experienced pain with it previously.
I’m still very much rocking the button-up, zip up or oversized/ stretched necked tops and pyjamas,purely because it’s so much easier and less risk of knocking the implant or disturbing anything . Partly this stems from previous surgeries where there has been a delay in healing that I’m being a little more cautious this time around, and yes I’m also still sleeping wedged with a mountain of pillows and cushions on my sofa, again for the same reasons as already stated.
Day 9- 6th December 2023
Don’t worry, I’ll keep today’s short and sweet as there’s not really anything new to report. Today has been a normal mum day rushing about here, there, everywhere. The only thing I will say about today is that it has been a super positive one. I had my daughters first ever parents evening, and I can’t lie. I felt so nervous like a naughty child bwing summound that to speak to the teacher, is my parenting up to scratch? Am I doing well enough by her? Could I do better? Essentially, I know my daughter is a reflection of me. What I put into her is what she gives out. Is it enough, especially as a single parent?
I had nothing to worry about, it was an absolutely glowing report. It appears one of us in the family has a brain and knows how to use it. She’s super polite, is kind and caring, is meeting and exceeding EYFS criteria, is very knowing and doing fantastic with her speech and range of vocabulary (something I massively worry about as a deaf parent) I loved that they said she signs using BSL when she either doesn’t know how to communicate something ,is feeling unsure or shy or just because she wants to, nursery have said they will encourage this which I also absolutely love. It was so nice to hear (no pun intended) how the areas I stress and worry about the most she’s thriving in. I never have and never will put pressure on her or any future children as long as they are kind,polite ,happy, and healthy. I couldn’t ask for more. I’m incredibly proud of my little CODA for embracing her true self and how well she’s settling in.
Day 10- 7th December 2023
Today, I had my first post-op check and dressings removed at the hospital. All went well. For more details and info, check out my previous two blogs where I’ve discussed this in full depth and details.
Day 11- 8th December 2023
It’s getting to a point now that it’s getting a little trickier to photograph the osia site . I’ve been a little bit lightheaded and dizzy this morning, but nothing unmanageable.
I’ve always been really honest and open with my daughter about my deafness. She, of course, is still very young, so she doesn’t fully understand it all yet. Her interpretation has been “mummy poorly ear” or poorly head. She alternates between the two.
In some respect, she’s not far wrong. The morning after my operation, Mum showed her the photo of the bandage I had on .Since being home, she’s seen the dressing, and now she can fully see it.
Today, she’s been extra curious. Keep asking to look at and check mummy’s poorly head, as though to check, it’s not fallen off .
I’ve allowed her to touch it (with guidance ,although I can’t feel anything I don’t exactly want her being rough with it” “Mummy bump all spiky” has been her interpretation of it, that hasn’t stopped her wanting to feel my head multiple throughout the day.
While building a “fairy house” (Tiddlers & Nippers splash mats over my dining table), she decided to very cleverly place her insulated Tiddlers &Nippers water bottle directly on the edge of the splash mat. I was totally unaware of this as I was on the floor setting up her “fairy house. “… yes, you guessed it.. the metal 500ml bottle came crashing down… yes, it caught me.. of course, on the implant.. thankfully, just the very edge of it as far as I can tell.. It’s a very good job it is all numb still. Otherwise, I’ve a very funny feeling that would have been a rather big ouch…
Admittedly, her first reaction was, “Oh no, mummy, mummy’s poorly head ,I very sorry. Mummy, ok?”
As far as I can tell, all looks to be OK, and I’m still in one piece .the wound area is starting to scab in places, and there is some definte hair regrowth coming back “spikes” as I’m reminded.. perhaps I’m part hedgehog .. I promise nothing else is spiky or prickly about me
What I now know to be tinnitus is just starting to creep in again. Right now, as I’m typing so far, it isn’t too loud, just a buzzing/ringing sound fairly quietly.
Day 12- 9th December 2023
Nothing osia related to report today, all has been rather chilled and quiet in that respect still some numbness,dizziness and tinnitus. I’m still sleeping on the sofa propped up with pillows and rocking the buttons . I keep promising myself tomorrow. I’ll sleep in my bed (honestly, I don’t know where I last did it would have been when my daughter was last in hospital, so October possibly?).
There is something I want to discuss, but I think it’s important it has its own blog post. Check the next blog as I will share it all there. Sorry to be a spoil sport, but I think, or at least hope that once you read it, you will understand why.
Day 13- 10th December 2023
Today is the first day since having the Osia implanted that I have been allowed to wash my hair. It felt so good to wash it, in all honestly my hair wasn’t in that much of a state, especially compared to some of my previous surgeries where I’ve got through bottles and bottles of dry shampoo, I think this time around I’ve only used dry shampoo twice, possibly 3 times but definitely no more than that.
This time, wound things have been much more simple and straightforward, whereas in the past, perhaps there’s been issues of infections, infections and other post op complications or there has generally been more work involved. Take BAHA removal, for example, night 4. The wound site began to bleed heavily and became infected,which caused blood and discharge to build up in my hair , lots of dressing changes which then caused residue of the plasters to become stuck to everything or caught un my hair, on top of anything already in there from the surgery.
It feels much nicer and lighter now that it has been washed. I opted to do a leave in banana food hair mask for 3 minutes to my wet hair, rinse this out and then wash it through twice throughly with a banana shampoo before following up with a banana conditioner ,just to add in any extra nutrition and moisture that may have been lost.
One thing I did notice whilst washing my hair is that I have some feeling returning to the surgical wound area. This is the first time I’ve felt anything on that side of my head since the surgery. I have a small patch just slightly above my ear to the beginning point of the osia implant ( there’s a video on my tiktok @gosh_gurl95 showing the exact area) that has feeling restored to it. I wouldn’t say it’s painful, more of a dull aching, that feeling you get when your hair has been tied up tight all day and you finally take it out. You could actually argue ,it has been up for a good two weeks solid nearly now, I’ve untied it each morning to brush it before tying it back up again, I’m finding this a much easier to manage the wound, perhaps this is actually the reason behind this hairband type feeling.
Keeping in the theme of feeling the part of the implant furthest away from my ear has a similar hair band type sensation, I can also feel all of the suture line now too, no pain or sensation though the feeling has returned to that of prior to the surgery. The only areas I don’t have any feeling as of yet directly behind my ear and on the main bump of the implant, otherwise feeling is pretty much back and feeling fairly normal or hairband like. Essentially, in short, 3 out of 4 edges have feeling restored. It’s just one edge, and the centre/ main body of the impambtvto return.
I’m still feeling dizzy and lightheaded,however, this is mostly first thing in the morning, and last thing at night unless I’m psrticualy tired,much better compared to what it has been. I’m trying my hardest to drink more .food wise, as of last night, were back . The hunger and snacking were unreal. A lot of food was consumed. I don’t want to jinx things, but I think things are heading the right way now.
Day 14- 11th December 2023
Where did that go? How are we at the 2 week mark already?! I’m sure when you have kids, time just flies by. Honestly, I’ve struggled to keep up with days and keep a record this week as the past two weeks have just flown by. It honestly feels like I’ve blinked. Things have gone so well with this operation, and recovery so far has been an absolute dream. I’ve never known an operation and / or a recovery to go so plain sailing and according to plan,in some ways it kind of scares ma that it has. There’s always been something whether it’s been the surgery has taken longer than planned. There’s been a complication in theatre , infections, or slower healing time, and rejection post operstively.
Part of me is still waiting for something to go wrong that hiccup or bump in the road because it’s me after all, and it’s usually how things typically go for me.
A few hours after arriving home from London for my post-op check. A message popped up on my phone. “You have a new message on mychart. Please log in to read”
My initial thought was this was my after visit summary, or the thank you for letting us care for you today message. However, I had already received both of these.
It wasn’t either of those mentioned above. Instead it was a new appointment letter, nothing to strange or unusual- especially after surgery .I opened the letter, only to realise it wasn’t a new appointment letter ,instead it was a change of appointment.
My appointment for next Thursday the 14th December with my consultant Joe, had been cancelled and moved. No big deal ,I assumed because he had popped into today’s appointment , that my ENT review appointment may have been pushed back by a week or so as a result.
Wrong again. Instead the appointment has been pushed back to …. June….
Wowser….
How do I feel about this? Honestly, I was at first frustrated and angry. My initial thought when I first realised what was going on wasn’t a particularly positive one it was more along the lines of.. well, thanks. So much for we will keep an eye on you so much for we will take really good care of you (admittedly said when admitted , whilst going underanesthetic and again the following morning)
I can’t lie. It took me to a dark place, a place of feeling betrayed, and thoughts such as Can I really trust the hospital ? Do they really care? How can they possibly keep an eye on me when I’ve moved from my appointment being 7 days away to now, currently being 182 days away? (No, I didn’t work this out myself ,it would have taken me far too long to count each individual day. My friend Google stepped up to help). Admittedly, this doesn’t sound as awful as 6 months ,so I think I will stick with that instead.
I felt lost,confused, and hurt muddled into one. I guess it brought back a lot of things I perhaps haven’t previously addressed ,when my previous consultant did the BAHA implant and essentially that was the end of things, no support, follow ups or after care and everything then onwards became a battle and struggle to get help and support, I then began slipping through the cracks and being lost within hospital systems. I knew very quickly after activation with my BAHA that something wasn’t right. It took 6 years before something was finally attempted to help, again very quickly after this I was dismissed and I became lost in the system until I met Joe in June 2022.
Once I had calmed down and let myself feel everything ,I felt awful and so embarrassed for ever thinking or feeling this way. Reality is its ok to feel things, I noticed and realised my emotions and feelings instead of coming straight on here ranting, raving and kicking off ( which would have been totally wrong) I stopped and distanced myself for a bit and waited to be in a better head space.
Reality is, I know Joe so far hasn’t ever done me wrong. Despite not being the easiest of cases , Joe has always stuck true to his word this far .when has he ever left me? He hasn’t. Joe was the one who picked me up out of the rubble, has helped dust me down, is building me up again, slowly piece by piece.
Deep down , although perhaps yes it may have been better if we had discussed pushing it back , I know it wouldn’t have been done if things weren’t going well,or if there were any concerns. It is reassuring to know and absolutely is a positive that I’m doing well enough that we can push it back that far, although absolutely yes it does feel a scary way , a way and is probably the longest I’ve gone without an appointment with Joe.
I know I need to start feeling more confident that I’ve got this, and I can do this. I know if there are any issues that I can email the implant team and / or message Joe directly on Mychart, I’m really not totally alone. I’m back at the hospital early January anyway to see audiology, so I’m sure if there are any concerns or any issues they would either go and find Joe or at the very least contact him to arrange to see me, I’m hopeful I may potentially see him at this appointment, as its going to be a biggy. Lots of emotions and feelings on it, what’s happening to me with old age and parenthood. I would usually breeze through all this.
Realistically the appointment being pushed back isn’t the end of the world as I wouldnt have had childcare for this particular appointment ,so it would have meant taking my daughter with me, not entirely a bad thing though as I think taking her may have helped settle some of anxieties and reassured her that mummy is OK, she has met Joe once previously when I had no childcare.
I had it all planned out that I would after my appointment take her to my childhood roots of Great Ormond Street Hospital, buy her a snack in the Lagoon (patient and family restaurant) which would benefit the hospital charity and allow her to blow off some steam in the Disney Reef before travelling back home. Win ,win all around.
Financially it’s not the worst thing either as it means instead of a further 2 appointments this side of pay day to fund, it will only be 1, although admittedly it would have been cheaper train fare than today due to my appointment being an afternoon one, meaning I wouldn’t be travelling dueing morning work commute time, it would have most likely cost £29 with disabled rail card instead of todays £45
June feels like a lifetime away, but 183 days sounds a little more doable ,so I will focus on this and remind myself I’ve got this. I think what scares me is why things are going so well and plain sailing , its just not me, there’s always something with me, so far this time there’s not so I guess to some degree I’m on tenterhooks awaiting it, whatever it may be.
Today I had my first post operative check at the hospital. I was aware that there were some delays and strikes taking place with the trains and tubes today. I had looked up my usual route last night, but I couldn’t see anything flagging up .I was hopeful to not run into any issues, however just to be on the safe side I set off earlier, at least if worst came to it I would have more leeway and time to play with to get there. I couldn’t miss this appointment, it was a rather important one.
I’ve always found that the first post op check usually takes place on day 7, but It’s a busy time of year and the hospital are probably trying to get as many patients seen before Christmas as possible, totally understandable, nobody wishes for health issues at Christmas do they.
Today is day 10,so 3 days later than what I’m typically used to for a first post op check.Equally we all know me and my body don’t exactly ,always play by the rules ,so actually this could work well in my favour.
After very little sleep (I couldn’t sleep until gone 2am for no apparent reason), it was a…I would say bright and early start but actually we’re in december now so it’s a dark and early start.
This morning definitely brought back memories of surgery morning. I woke, tidied my bed away (still camping out on the sofa- for padding/protection reasons to the implant, but actually it’s coning in handy with a toddler who has recently moved into a bed ( literally the day I came home from hospital.. perhaps on reflectiom not my finest idea) she has recently discovered she can get out so is now getting up regularly, just because she can, so I’m in prime location for turning her back around as the bathroom is directly opposite and the majority of her toys are in the lounge as is my Christmas tree which she just doesn’t leave alone at the moment) and set about getting ready for the day, of course I should’ve totally expected and planned that my daughter would therefore also wake earlier.
Not quite the plan I had in mind but never-mind we roll,we move and we adapt, just meant things were a little more chaotic in trying to get us both ready at the same time.who doesn’t love a little morning chaos and rush around?!
Once mum arrived at mine at around 8.30am she took over in finishing getting my daughter ready while I grabbed a fresh book as I’ve finally nearly finished the one I’ve been reading ( I love reading just don’t get the time to do it all that often) and flew out the door. I decided it would be quicker to drive to my parents and park my car there before walking to the train station.. actually, I probably would’ve been quicker walking.. but we won’t mention that 🤣. My brain isn’t switched on this morning, well, to be honest, I think it’s still in the operating theatre somewhere ,if it ever even existed in the first place.Anyway we get there.
I decided not to wear my hearing aid walking to the station and just enjoy the peace and quiet of the walk, I barely see anyone, and it’s a rarity to be out child free. I get to the station and get my ticket £45 something!! Thank goodness for disabled persons railcard bringing it down to £29.75.. yes, if you’re deaf you are indeed eligible for a disabled rail card ) I realise I’ve missed the train I planned to get. It doesn’t matter as I had set off much earlier than I actually needed to incase of strikes and issues .
I popped into the station coffee shop and grabbed a coffee, by the time I had got to the front of the queue and my coffee had been made (large black x2 sugars I defintely needed it this morning and needed to switch on before my appointment) my train was just pulling in . Perfect timing and no needing to wait in the cold either. win win.
I get on the train just after 9am and find a seat, and settle down with my coffee and book. Safe to say the coffee is disappointing and just tastes like warm water. I can’t taste any coffee. By 9.55am, I arrive at Liverpool Street station.My appointment isn’t until 11.30 I decided to just head straight to the hospital as everywhere online last night had said there were lots of delays and strikes, better to be early than to arrive late.
I head to the tube station it’s heaving with people commuting to work, like sardines in a can, despite this there are no issues with the first tube and I quickly arrive to make my connecting tube, the tannoy is blaring something out. I’ve no idea what is being said. I only know, well, assume the tannoy is going off, as people have stopped in their tracks looking up focused, concentrating on something, mutterring, sighing , or turning around to go an alternative route. It’s not helpful when you’re deaf and have no idea what’s happening.I have no choice but to continue on and hope for the best.
Thankfully, whatever was going on didn’t affect my journey, and I again arrived relatively quickly at my next stop. I debate what to do as I’m now minutes away from the hospital but still have a while until my appointment. Do I just head straight there? grab a coffee from the café and read my book before heading up to the ENT floor? Or do I go for a wander? I debate do I possibly walk to Great Ormond Street? seeing as GOSH is only a short walk away, and I can pass a bit of time, grab a coffee, and revisit my old roots?.
My decision is quickly made for me as I come over light headed,at first, I can push through it ,however, it quickly becomes more intense, progressing to dizziness. I keep walking as it’s not yet affecting my vision .A few steps more, and my head is spinning. blurred vision. The lot.
I continue walking fighting through it,thankfully, I know where I am, and I’m literally moments away from the hospital. I know if worst comes to it and I do go over,I’m in a good place ,what with the ENT Hospital seconds away , UCLH isn’t far and there’s plenty of other hospitals in this small area, meaning there’s also a lot of medical professionals, doctors, nurses and medical students, student nurses etc walking about. I’m surrounded by help if I do happen to need it before I make it to the hospital, though, Of course, I just want to make it to the hospital to full safety.
I’m still lightheaded as I approach the hospital ,however, it’s eased up. A few seconds later, I notice myself veering off to the right.Nothing too abnormal as I’m dyspraxic so walking in a straight line is mission impossible anyway, however this isn’t that, its as though I’m being dragged to my right. I have no control. I feel like I’m fighting against my body, trying to push back on course towards my left ,as opposed to nearing the busy road to my right. I somehow, although I’m not sure how, stop myself just on the edge of the kerb and am able to steer myself back away from the road edge.
I get into the hospital at 10.30 am. I head to the toilets .whilst in the toilets, I come over dizzy again and remain in the toilet for a good 10 minutes, waiting for it to pass. Once it’s passed, I decide it’s probably a good idea to grab some water .While queuing up, I begin to get the shakes ..this is turning out to be eventful. I decide because of the shakes to grab something to eat too, I wonder if perhaps it’s too much caffeine too quickly? Perhaps I should have got a small one?
I sit with my bottle of water and almond crosaint in an attempt to gain control of my body and steady my head again.it’s so weird , I otherwise feel totally fine within myself. I decide to look at my phone instead of my book , at the moment I take my phone out my phone buzzes with messages from a group chat with two of my mum friends ,who are out with the kids today. They text wishing me luck and generally catching up. I tell them about this mornings eventualities . My friend Nikki tells me I need to tell the hospital, nah I’ll be OK it’s nothing I tell her. She insists that I should tell them.
I’m awful. I’m not the sort of person to say when I’m having an issue or something is wrong. I’m very much I don’t want to bother anyone, I don’t want to be a burden, and very much I can figure it out and get through it. In terms of medically, this I’m awful at, too. I always feel it’s nothing, medical professionals too busy , others who need help more than I do, etc. I know this is absolutely wrong, though, of course, and the team I have right now are fantastic. I know I can approach them with anything ,even though the reality is I don’t.”What if it’s rejecting?” Nikki asks. She’s right. Of course, she has a point.
I can’t lie. I can’t say that’s not crossed my mind,though I’ve tried to push it to the back of my mind ,as far as I possibly can .I don’t even want to think or face up to the reality that this could be a potential. Equally, if it is, it is.. I debate it for a while, Nikki’s words playing on repeat. What if ? .. I realise what if it is? What if I don’t say something and it is rejecting? and then it goes too far? would I live to regret staying quiet? What if it is, but by saying something, it can be halted and nipped in the bud?
I think deep down I know I probably should. I tell myself I will. I still have a little while until my appointment, my hand stops shaking, but I’m still feeling a bit lightheaded and a bit off.I begin talking myself out of mentioning anything. I’m fine. Well, I guess I’m not, really am I?, but you know what I mean. I’ve got this. I’ll be fine. I’m 90% sure it’s not rejecting, and this is just a blip.
11.15 am. I decide I should probably head up now. I go and check in at the main reception. It’s fairly quiet, so it’s not too awful to do, thankfully, as always, though of course I autopilot my nameand appointment time.
I arrive on the 5th floor, reception ,and come to think of it. Actually, all of the floor, as far as I can see, is pretty quiet. I struggle to hear the receptionist though as she keeps looking down at the computer and seems to be struggling to find me as she mentions something about another floor or another screen or another appointment? Another something is all I manage to catch, then there’s mention of a doctor. I’m not quite sure what’s going on.. After a minute, or she looks up and says oh you’re seeing Haddy take a seat in zone “ee”.. I miss this key information. it’s a toss-up of B or C.. It’s got that “ee” sound, so is it B or C?I debate and replay it over and over because, of course, asking her to repeat would be too easy, wouldn’t it!
I gamble it, deciding to sit in zone B. Partly because “my seat” is free.. if you don’t already know, I have a seat. Of course, no, it’s not allocated specifically for me or anything like that ( it would be great if it was, though) . There’s this one seat, if it’s free I have to sit there. It’s my seat, usually no I’m not specific with seats or anything, however.. this particular seat is a single armchair, that is directly outside of the door, meaning for me as a deaf person, I’m in prime position to be able to hear my name when it’s called and also to be able to see when the door opens/ closes, which of course naturally you, well I do anyway naturally look up, being deaf I need to see faces to lip read.
My zone B seat is free, so I take the gamble that this is my sign, that I’m supposed to be in zone B. I don’t feel as bad as I had been, thankfully, so I sit and read. I as always position myself in a way that I can both read and see the door/ peoples feet coming and going so this helps in giving a visual cue as to when I may potentially be called through or when roughly I could expect to hear someone’s voice rather than it being a complete guessing game or making me jump out of my skin. This allows me to be able to switch off and relax a little while waiting. Whereas if this seat isn’t available, I’m much more aware and on higher alert, which can be draining.
I sit reading my book until I see the bottom of the door. Swing open . I see a pair of shoes standing still at the door. I don’t hear anything, but I look up. I go light-headed again. Perhaps reading isn’t the best idea.. everything’s a bit out of focus, but I know exactly who is standing at the door.. It’s Joe.
Joe spots me (not hard given where I’m seated) he smiles and asks how I am, yeah not too bad thanks I respond, he asks how everything is going op wise, I say I think things are going well , are you seeing Haddy today? Joe asks ,I confirm I am, Joe goes about business calling his next patient .
Yes ,yes I know I could’ve quickly said then and there about the dizziness and feeling lightheaded, but honestly I don’t feel, as much as I’m comfortable to say so, I don’t feel now is the time or place. I’m not on his list today, and he has other patients.
Don’t get me wrong I’m sure Joe would make time for me but I know he’s come out for a reason and it’s not to see me, so I need to let him get on. I have an appointment to see him next week, it’s fine I’ll fill him in on everything then, although I’m sure if it’s cause for concern then Haddy will either alert him or get him to come in today.
Joe calls his next patient through, and I quickly check my phone. Someone else has messaged me, saying I need to tell them about the dizziness and light headedness. It could be a sign of internal bleeding or meningitis, they say. OK, OK, decision made. I’m speaking up. I don’t think it’s either of these things personally but it’s going to play on my mind and I know I’ll kick myself later if I don’t mention it.I go back to my book and continue reading.
Maybe 5-10 minutes later, it doesn’t feel like long anyway, Haddy calls me through. Haddy apologises for the wait. It doesn’t feel I’ve waited more than a couple of minutes since arriving. I follow Haddy through and take a seat.I’ve known Haddy years. I can’t remember when I first met her,but it was certainly over in the old building and I recall her marching me up and down the corridor when I had a raging BAHA Infection until one of the doctors stopped and gave us a few minutes of their time.
Haddy asks how I am, its been a while since I last saw her properly. I think my last appointment with haddy was march/ April time after the BAHA removal, though I’ve seen her in passing at other appointments. I tell her I’m doing good and ask how she is too, I’m then asked how everything is going surgically, I say how I think everything’s going really well. Haddy tells me that today she will be removing the dressing.
Haddy takes a look at the area before removing the dressing and tells me ,so far from what she can see it all looks really good and that I should be able to wash my hair by tomorrow- Saturday . I still haven’t told Haddy about the dizziness and light headedness.
Inside I’m screaming at myself tell her, why are you saying all is OK?, why didn’t you say everything’s going well but .. and drop it? What’s the matter with you? tell her, just say it, how hard is it?, just spit out, just do it, yes you do need to say it.
Haddy asks me how the pain has been, i tell her I’ve not had any issues with pain. It’s still numb, and then I casually drop it into conversation, more as a throw-away comment than anything, but it’s out there. I’ve said it. I can’t quite remember how I worded it. I think I said something along the lines of “yeah it’s been really good I’ve not felt anything its still numb I’ve had a bit of dizziness and some ringing/ strange sounds but it’s all been really good otherwise. So it was out there, but kind of a throw-away comment sandwiched in with everything else. I thought to myself if she reacts or comments on it then that’s fine ,we will discuss and take it from there.If she doesn’t then I won’t mention it again until I see Joe next week and I can know I’ve said it.
Haddy is very observant, and it doesn’t get past her . Haddy asks about the dizziness . I again say it more as a throw away comment about how I woke from the anesthetic dizzy and how it had remained constantly for the first few days and how I’d heard a low buzz/humming sound since coming round but it all stopped around day 5, but since yesterday the dizziness has come back and the ringing sounds have come back too, much louderand higher pitched, like a car alarm or siren going off .
Haddy asks if I’ve had any metallic tastes in my mouth or if I’ve got a metal taste when eating. I haven’t, I don’t. I’m not sure what that would indicate or suggest if I had. Haddy said this was good that I hadn’t, I assume if I had, that would have been something a bit more serious, perhaps.
Haddy asks if I’m eating,drinking, and sleeping enough. Yes, I’m doing all of that. I instinctively reply . OK, that’s good she says. Haddy then asks what side the tinnitus is ,I explain how I’m not really sure, but I’m guessing it’s my left , I’m not sure I can get tinnitus right sided? Or can I? However, i know at least the majority is left as one evening i laid on it, and it was going crazy.
Haddy removes the dressing. I’m told it’s all looking really good, and that the stitches are dissolving. That’s such a relief to hear (no pun intended) Haddy asks if I’d like to have a look at it and says how she thinks Joe might like to have a look, am I happy for her to call him in. Of course, I have no objections for a split second my mind says why, what’s wrong? What needs a second opinion? Thoughi reasusre myself it’s just so he can see his work, and see for himself.
Right at that moment, who should just so happen to walk in the room right on cue?… yes, none other than Joe. His ears must have been burning. Joe comes in and tells Haddy to carry on as he doesn’t want to interrupt or stop what she’s doing and how he would quickly pop in to see how I’m doing . Haddy says it’s fine, she was just about to get him anyway.
Joe asks how I’m doing and how things have been going since the surgery. I tell him I’m alright and things haven’t gone too badly.. that’s definitely an understatement, to be honest. Things have been really plain sailing. Haddy tells Joe that I’ve reported having dizziness, light-headedness, and tinnitus to my right- I correct her, saying it’s the left . Haddy explains how I don’t have any metallic taste in my mouth, nor do I have this when eating.
I notice a look of relief in Joe’s shoulders when haddy says this, kind of like he relaxes a bit more, from body language alone, I’m reassured it’s nothing major. Joe turns to me and asks me to tell him about the dizziness. I don’t quite know where my words have gone as I struggle to find them for some unknown reason. I think partially because I know I’m not supposed to be seeing him today .
I’m trying to find the quickest and simplest way of talking about it .I don’t want to be taking time away from patients that have appointments with him today or taking up his time unnecessarily.I know Joe will take all the time needed and deep down I know he wouldn’t have come into the appointment if he didn’t have time.
I tell Joe how I woke from the anaesthetic dizzy and lightheaded, and that remained for the first few days before easing off. By day 5, it had totally gone,however, as of yesterday (Day 10), it has returned . Joe asks if it’s constant ,it’s not now I explain, the first few days it was constant ,after a few days it came more in waves, but still fairly regularly .As times gone on, it decreased until it fully stopped on day 5, as of yesterday, it’s back and just comes out of the blue . I’m asked if it lasts a few seconds and what it feels like. I explain how it can be seconds to minutes when it does occur, and describe what had happened walking up to the hospital- though I don’t go into full details or full extent of it.- again purely because I know he’s a busy man and has patients who are listed to see him today.
I promise myself I’ll go into full details and go through everything more detailed and thoroughly when I see Joe next week ,as I have a 15-minute appointment for ENT review next Thursday.Joe asks if I’m eating ,drinking, and sleeping again like haddy. I instinctively answer yes. Joe asks again, I still answer yes bit perhaps not quite so quick of the mark as I had the first time he or haddy had asked..
Joe tells me that it could be that my inner ear has become disturbed from the surgery, and essentially, it’s my middle/ear ear kicking off (a bit like a disgruntled toddler). This makes sense. Joe reminds me this is a different implant from what I’ve previously had, so this could be a factor, too. Things are going to,of course, feel different because of this.
Joe asks if I’m sleeping, drinking, and eating enough as sometimes a good night’s sleep can really help and make a difference, and keeping up with plenty of fluids and food could also make a difference. Ultimately, Joe asks if it’s impacting on my daily life, but it is,but isn’t, I explain to Joe .it is, but it’s not having any major effects. I can still get about and do things, but some things are taking me a little longer, but i wouldn’t say it’s a major issue it’s no catastrophe.
Joe isn’t concerned and is happy that this is all normal, however he does say if this continues it may be something that we need to dig a little further into to, and reassures me that they will keep an eye on me. He asks Haddy if she’s going to remove the dressing ,to which Haddy tells him she already has explaining that’s why she was going to get him, to see if he wanted to have a look. Joe asks if I’ve seen it yet. I haven’t, and honestly, I’m quite eager to see it.
Joe comes over and has a quick look and asks me to get up on the bed so he can have a good look at it. Joe has a good look and feel. At various points, he asks if I can feel that. I can’t feel anything. The whole area is numb. I can’t feel any touch at all . Joe moves where I can see to lip read and have more optimal chances of hearing him before asking if I can feel the bump.I can’t but I’m aware of there being a bump (I know that makes no sense whatsoever)
Joe explains, the bump isn’t going to go and will remain, just due to all the previous work I’ve had done and with this being a different implant it is going to be more prominent, which is absolutely fine. Of course, yes, there is some swelling that will go down with time .what I see now isn’t a full representation, but realistically, I don’t think or expect it to go down much compared to what it is now, again totally fine. For me, it’s not about the aesthetic but functionality, what it gives me, my daughter, and my family. Whether it gives me confidence, brings back my independence, whether it gives my daughter her mummy back and a better version of her mummy ,a mummy that can interact and engage with all aspects of her life and childhood without hesitation, is all that matters to me.
Joe is happy with how everything is healing and isn’t too concerned about the dizziness and doesn’t mention the tinnitus. I’m reassured that they will keep an eye on me and will be quick to act if needed.
Joe asks if I have an appointment yet for my activation. I do indeed.. I keep wanting to say its the 6th , it isn’t. Haddy is sat at the computer and tells Joe I have two dates , I have the 14th (next week) and the 4th January (14th is ENT review with Joe)
Honestly, I’m excited but nervous about activation. It feels super soon. I don’t recall activation for my BAHA being this quick, maybe it was ,who knows it was 10 years ago, a lot has changed in that time.I guess in some ways activation is the real moment of truth whether things are OK or not. With my BAHA everything was plain sailing and then a short while after activation was when the problems begun.
I guess I have that slight hesitation and reservation, equally I know this is a totally new device, and I’m nervous about what sound quality will be like and how life could look with the osia. Equally, I don’t want to get my hopes up either.
Joe had to leave as he had another patient to see .Myself and Haddy remain in the appointment for possibly another couple of minutes. Haddy tells me she will see me again in 3 months time for a medical check, to check how the dizziness is, how the healing etc is and generally for a guess a bit of an MOT and check over really, so this is super reassuring .
Once the appointment finishes, I update those who have been worried about my dizziness and suspected possibility of rejection . I still haven’t seen the wound or bump yet. I must admit I’ve had a feel of it, though ,not that I can really feel anything, but it doesn’t feel awful . It feels everyone else has seen it, but I haven’t. I feel I’m missing out,so of course I have to attempt the awkward angle to get a photo of it 😅 love how I’m always the last to see 🤣.
I don’t know what I was picturing or how I thought it was going to look, but I’m impressed. It looks super neat. Minimal hair has gone, and the stitches look like they’ve either dissolved or are dissolving nicely.
It’s then time to head home to my daughter, I usually head straight back anyway but today it feels more so important to get back as I know my daughter was nervous and anxious about me going to hospital today, I defintely think last Week has affected her more than I expected.She certainly understands more than I give her credit for. I had reassured her mummy would be home soon .
I was quite lucky with the tubes both being ready and waiting ,it’s as though they knew my baby was waiting for her mummy. The train had about a 10 minute wait ,so following doctors’ orders, I ordered myself a large gingerbread coffee, my absolute favourite (all year round , gingers aren’t just for Christmas you know).
Unfortunately though I’ve no idea what they did to my coffee but its super strong and it doesn’t taste of gingerbread whatsoever, but I behave and as doctors orders I distract myself with reading my book while drinking it.
It’s safe to say a certain little someone was very excited to see her mummy home. I don’t think she’s run at me quite like that for a cuddle since I came home from hospital last week. She continuously throws herself at me for cuddles and tells me she loves me. Super cute 😍
I won’t talk too much about day 1, only purely because I think I’ve pretty much covered all/ most of day 1 in “Overnight Osia” in quite a bit of detail, instead I’ll just quickly recap day 1, although of course if I’ve missed anything just shout at me.
Day 1 was mostly spent in hospital, I was officially discharged at 9 am after a sleepless night with bladder retention. However, dad didn’t arrive at the hospital to collect me until 3 pm (ish) .
I felt absolutely fine in myself ,no nausea or headaches ,it just felt like someone had placed an elastic band tightly around my head.I guess similiar feeling to when the full head bandage was on. Tight, but not uncomfortable. I need to be more careful walking/ moving about and getting up. I can’t lie. I couldn’t bend to pick anything up – head first without head rush, at the knees slightly better but still a bit of a struggle , so if it’s on the floor, it’s staying there.
I had no appetite at all and very much had to force myself to eat.
Once I got home, I noticed sounds were massively overwhelming. Simple things that wouldn’t usually bother me were driving me insane and sounding so incredibly loud – things such as the tap running, peoples voices, general clattering and moving about (no the implant definitely hasn’t been turned on/ activated yet). I’ve also still been hearing the same buzzing/ ringing noise that I could hear in the hospital since I came around from the anaesthetic.
Day 2- Wednesday 29th November 2023
I’ve woken this morning at my parents house, my daughter woke me wanting to get into bed with me for cuddles. Every part of me wanted to allow her in to snuggle under the covers. Every inch of me craved this contact with her, I craved breathing her in. However, I knew it was probably best I didn’t. The bed in the spare room is a single, my daughter is wriggler.. After BAHA removal, when I obliged, I woke to her laying on my head, not great, but wasn’t awful as the abutment had been removed, and there was no implant to damage This time around, it’s a slightly different story.
The hardest thing was telling her she needed to go to sleep in her own bed. She was upset, but she’s a very knowing and understanding child, so she got why she couldn’t climb into my bed right now.
I felt absolutely fine in myself, but I think it’s best to still edge on the side of caution.
I spent the night at my parents sleeping propped up with pillows, as this was the only way I could get comfy, and I still can’t fully lay flat ( the hospital haven’t said I can’t,I just physically can’t without it feeling like it’s really pulling)
This morning, mum advised me not to do the nursery run, as its a longer walk from their house. I felt fine to do it,but I did as told, instead gathering my things together before heading back home to my flat. Driving back to mine I noticed whenever I needed to look to my right, rather than just moving my head to the right ,like you typically would, I found myself having to fully turn my body to the right, as I realised whilst driving I couldn’t actuallydully turn my head to the right (Yes, I drove home and then realised I wasn’t actually supposed to drive yet… whoops)
Thankfully it’s only a few minutes’ drive from my parents to mine and it was just me in the car (dad followed closely behind to carry my bags indoors , so don’t panic I didn’t do any of the heavy lifting. I put him to good use in taking the side off of my daughters cot and sent him in the loft for the Christmas tree and decorations (whilst I stood at the bottom of the ladder instructing him)
This afternoon, I did the nursery collection for my daughter. Honestly, I couldn’t wait. I was so excited. It felt like the first step back to normality. Usually, it’s only me that takes and picks her up. Walking there all was absolutely fine. though my daughter wasn’t impressed to see me, in fact she was very disappointed, as she wanted Nanna
The way home, I struggled. I quickly became very out of breath. I genuinely didn’t know how or if I was going to make it home. I did (thankfully). Once home, I had this overwhelming need to just sit down for a while. After a 5-10 minute sit down, I was absolutely fine (for context, it was only a 10 minute walk)
This afternoon, the fatigue and exhaustion have really hit, so much so that I felt the need to go and lay down for an hour until my dad came round and startled me. I guess partially my body catching up from the last couple of days, really. I’ve felt very frustrated and annoyed with myself for how little I’ve been able or have got done indoors. I’ve struggled to keep bending to pick up toys from the floor and go about the day as I typically would, and I’m certainly not as quick as usual.
Implant/ surgical area wise, I’ve not experienced any pain. However, I have felt a pulling type sensation above the surgical area and my right ear lobe. The right side of my forehead has felt swollen, but as far as I can tell, there isn’t any swelling, though. Things still feel relatively normal ,although it does at times still feel like someone’s pulling an elastic band or tape measure tightly to my head – it’s not painful or uncomfortable, though.
I’ve not been very kind to myself. I’ve been pretty tough on myself. Why haven’t I done this or that? That needs doing, I should be doing this that and the other. How have I not noticed this, that or the other. Generally feeling I’ve not done enough.
I have felt silly and beat myself up for needing a sit down after merely walking to and from nursery and needing a lay down late this afternoon.
I need to remind myself that I’ve not been out of theatre 48 hours , and I’ve not even been in my own home 24 hours yet .
I know I have to remember. Today is the most active I’ve been and the most confident I’ve been on my feet.
I’ve got to remember I’m not 10 years old anymore. Things are going to take a toll or effect on my body. In years previous, I wasn’t a mum ,nor did I have my own home. I didn’t have the worries or responsibility that I do now of caring for a young child, washing, housework, and dinner to cook. I’m not a superwoman. I feel us women and mothers do this to ourselves more. Why? We’re human. Why do we push ourselves in this way?
It’s OK to stop and listen to your body. I need to remember not even 2 days ago I had surgery, but I know I can’t, after all this is me to a T.
Day 3 : Thursday 30th November 2023
I’m definitely feeling much more myself. I’m feeling much more confident on my feet ,able to stand for longer periods of time without feeling light-headed .
I am still being careful and listening to my body when I need to sit down ,That said I’ve managed 3 lots of washing ( I had all washing up to date before I went into hospital, that’s kids for you never ending washing ), x2 lots of tumble drying, remade the beds, cleaned the bathroom and cleaned the kitchen surfaces and floors , picked up numerous toys on numerous occasions to name a few things.
Today, I’m finding it easier to bend at the knee as opposed to head first and seem ok as long as I dont do too much bending, walking, or standing .tonight, I’m going to attempt to do the Christmas tree and decorations. So, it’s not bad going.
No pain , the area above the implant feels tight and numb, a little tingly at times otherwise absolutely fine, right hand side of my forehead, right earlobe and above the surgical area, I don’t know how to describe it other than to say I’m defintely much more aware of these areas. These same areas are also still completely numb, whilst also feeling tight. I’m not complaining, though, as by the sounds of things ,Joe has given me a bit of a face lift during the process .
Mum came round this afternoon to bathe my little one as I’m not allowed to do anything strenuous or heavy lifting. Felt hard not to do it myself,but equally, I don’t want to cause any injury or damage to the implant, so needs must. Mum took today’s picture (I’ll post at the end of today’s write up) mum has said it looks more swollen today- I guess to be expected but honestly I’m not sure i can see it when I compare today’s picture to Tuesday Morning when the bandage was removed.
Appetite still isn’t back ,but I’m definitely starting to snack more- so far I’ve had two BN biscuits and some chocolate- I know absolutely awful intake and my skin is going to suffer in a few days, but it’s better than nothing.
The only other thing to report today is that I’ve had pins and needles in my left arm ,hand, and fingers all day since I woke up. I’ve slept on the sofa since being back home in my flat. Sleeping on the sofa I can sleep more upright with two pillows propped up against the arm of the sofa and a further two behind my back , there’s also much less risk of me rolling onto the implant too. I assume doing so, I’ve probably trapped a nerve somewhere.
A friend was due to pop in today for company, but she ran into an issue with her food shopping delivery, so that didn’t end up happening. However, we will reschedule for another date.
Today I’ve also successfully managed to have a bath on my own, nobody of course has said I couldn’t do so, however with the feeling light headed and dizzy and not being able to bend about I have delayed doing so ,just in case of any ossues as I live on my own ,so if we’re to get stuck or run into any issues I would well and truly stuck. Thankfully, all was fine, and I managed to get myself in and out with no bother.
Oh, p.s. Yes, I did put the Christmas tree and decorations up tonight…. all I will say.. It was not the smartest idea.. But it’s up, and it’s done now . If this doesn’t sum me up, I don’t know what will (I’ll update tomorrow about this)
Day 4: Friday 1st December 2023
Though it may not have been my finest moment to have rearranged furniture at 3 days post op (dont panic I dragged it about rather than lifting it) and manged to get the Christmas tree out ( dad had taken it out the loft so ,again i just needed to drag it) from my bedroom into the lounge, though it was definitely heavier to standup than I recall it being.whoops… I dont know why every year I think, oh, that’ll only take me 5 minutes – it doesn’t. I started at 6.30 pm – finished 11.30 pm in a heap on the floor (me, that is ,not the tree). It is safe to say that drained me and was a bit ouch after.
It’s been worth it this morning waking up to a little snow fall and seeing my daughters face ” wow mummy “, ” look look mummy” ” missmass tree” “best ever” , ” I love it” and pointing out all the things she can see on it. It’s far from perfect, and I’ll probably start again tonight. Little comments like this make it all worth it, and certainly makes the crumpled, drained sore mess I was last night very, very worth it.
Safe to say, I think my little girl is going to be a big Christmas fan like mummy, though she has already asked me “where the presents?” and been told no touch more times than I can count 🙈🤣.
Snow wise, she wasn’t too impressed when I told her to look outside… her reaction…”it’s snow.” ” Oh again,” “on your car mummy,” and sounded more like an uninterested grumpy teenager than a toddler (it’s only the second time she’s seen snow 🤣
Today’s been a really quiet one. Partly because I did all the housework yesterday – cleaned the bathroom, cleaned the kitchen floors, stripped and remade beds, cleaned the windows and mirrors, 3 loads of washing, 2 lots of tumble drying and then the Christmas tree last night. Plus, I have no funds to go anywhere to do something, and my daughter has been super tired. This week has definitely hit her hard with being out of routine and out of sync with me being in hospital. I have to listen to and respect her body, feelings, and emotions, too. So, a quiet day it has been.
I’ve been much more confident on my feet today and feel my usual self,no dizziness or light headedness. My appetite seems to be slowly returning, for the first time in weeks. If not months, I’ve had breakfast, snack wise, I’ve definitely snacked more and actually wanted dinner tonight.
However… I did notice at about 4.45pm this evening that there’s some fresh bleeding .There has been some seepage of blood and fluid coming from the bottom of the dressing that hadn’t been there before. It’s not painful. It feels more, I guess, like if you fall and graze your knee, and it bleeds a little.
I’m not overly concerned currently, as I know bleeding can be a risk with any surgery, and it is still early days. I’m keeping an eye as I know with the BAHA removal. I woke on day 5 to blood on my pillow, pyjamas, and generally everywhere. If it bleeds heavily or there are any issues overnight, or I wake in a mess with blood everywhere, I’ll contact the team tomorrow. I have my consultant/ surgeon on mychart care team ,so I can always drop him a message or failing that I have the email for the team if I need to get in touch.
Update 11pm – I’m definitely feeling a sore throbbing sensation behind my right ear . I’m hoping it’s just the anesthetic wearing off, but equally this is how things felt after the removal and it turned out there was an infection- this is where it doesn’t help that everything is numb besides this one little strip, and with everything being on the side of my head . I’m not at the point of needing painkillers. It will need to get much worse . I’m keeping an eye on things.
The fresh bleeding and seepage is where my finger is.
Day 5: Saturday 2nd December 2023
Thankfully, no more bleeding overnight .As far as I can tell, I do believe there’s possibly been more seepage, again not to be sure. It’s hard when all I can really use for reference is the previous days photo. Due to the location, it’s a bit tricky to see any other way. Today, I can definitely see the swelling that Mum was talking about.
Today, I’ve probably been the most active out of the house. Went for a drive to get my daughters’ Christmas photos done. Was booked in for 10.30-11am. Didn’t get there until 10.50.. thankfully, the photographer was super lovely and understanding, and we managed to get some shots in quick.
My daughter was adamant. I had to get in a few photos too, minimal makeup, hair shoved up, and a dressing on the side of my head … not quite the look I had planned for the photos,but definitely memories to look back on and I guess one day these photos will be all she has of me( though hopefully not for many ,many,many years yet. I’m not planning on going anywhere)
Despite knowing exactly where I was ,I somehow managed to get lost coming home . I don’t even know.. I shouldn’t be let out… how anyone can possibly manage to drive a good 15-20 minutes in the wrong direction and not know, I’ll have no idea .I found I could turn my head more today while driving, but it definitely pulled a bit and felt more comfortable to fully turn ,although I tried to keep this to an absolute minimum.
Late this afternoon ,after lunch , we went for a walk into the local highstreet for the town’s Christmas fayre and light switch on (we didn’t stay for the lights too cold and i had visions of large crowds with my head being knocked) . It was bitterly cold -1 to be precise .
The surgical site massively noticed it despite being well protected with a oversized thick beanie ( actually it’s one adapted for when I had my BAHA, must look an see if I can get one for osia) plus my thick coat hood. It’s definitely going to be like little ear and super sensitive to the cold, I think .
There wasn’t much there so we didn’t stay too long and I was super careful not to go anywhere crowded incase someone caught my head,any where packed I either backed away until it was quieter or just avoided. Father Christmas’s reindeer we hung back, until it was really quiet but then I struggled to get past people and the elbows to get back out, lots of wide steering with the pram, reversing and detouring was required. Don’t worry, mum, nobody caught my head! The pram definitely comes in handy sometimes.
This evening I think the area is looking a little redder in colour and slightly more swollen, I’m wondering if that’s from the cold and extra coverage from hat and hood or if it’s just a one of those things and standard healing phase.
Much ,much more myself on my feet, which is great to be able to just move and do without thinking about it (minus the crowded areas of the Christmas fayre)
Once warmed up, the surgical site didn’t look anywhere near as red and felt absolutely fine again. I suspect it’s either just got too cold or hasn’t liked the additional layers ,or even perhaps if my coat hood was too heavy on it. I very much noticed when we were at the Christmas fayre anything to my right I qas having to full turn, rather than just my head,I massively struggled to make anything out when Vendors were talking, not a negative though as it meant I spent less as I couldn’t hear them instead just smiling and thanking and walking to the next stall.
I’m still sleeping propped up on the sofa ,admittedly I haven’t actually attempted or tried to sleep in my bed as of yet,I’m just worried I will roll onto the implant, or if my daughter gets out of bed and clambers in with me without me knowing and ends up hitting it or ends up sleeping on my head again. whereas there’s no hope of her getting onto the sofa with me and my Fort of pillows and thick duvet, so I’m fairly safe here.
Day 6- Sunday 3rd December 2023
Where has that time gone? Seems crazy to think exactly a week ago. I was at my parents’ house, where I had gone to stay overnight in preparation for the early start the next morning. Panicking , if I would actually be well enough to go ahead with the operation. Thanks to my daughter having been unwell the week before until the Thursday and my voice playing up a little a few days prior
I woke on the sofa (I’m still setting up camp here of a night) at 4.15am ,for absolutely no apparent reason. I kept waking up ,very broken sleep, which isn’t like me. I was absolutely convinced my daughter was standing in front of me or walking about either in the lounge or in the hallway outside the lounge and bathroom – she wasn’t. Each time I woke up with this feeling, I turned on the torch on my phone to scan the room and checked the hallway. Each time, she was safely tucked up asleep in her bed.
I don’t know if I’ve mentioned it, but I’m still not sleeping great,I’m not getting off to sleep until around 2-3am. I just can’t slept, there’s no issue of pain or anything keeping me up, although I did expirence a lot of high pitched ringing and buzzing earlier this week both day and night,but much louder of a night, this seems to have stopped.
I must have fallen back to sleep again as the next thing I knew, I was woken up to my daughter gently stroking my face, asking, ” Please, can I have weetabix” and kissing my nose . I can think of worse ways to be woken up. I check the time it’s 8.30am. I realise she’s entertained herself as there are toys all over the lounge floor, some of which have come from the playroom.
It takes me a minute to come too.i assume I’m just tired from the broken slept last night. Once I finally came too, I realised that my head was hurting. The right side of my head has a localised headache just above my right eye. As the next few minutes pass, I realise I’m struggling to lift my head.. I can’t lift my head up off the pillow at all. I continued to lay on my make shift bed on the sofa for a few moment before realising this wasn’t easing.
Ten minutes or so later, I realise that the headache is now spreading across the entirety of the front of my head. If this is the ” it will feel like you have had a bit of a bump to the head” that Joe described. I get it. This is a good way of describing exactly what it feels like. It vaguely brings back memories of when an ex deliberately pushed me head first into a freezing cold winter nights concrete pavement a number of years ago- admittedly it’s not anywhere near as bad as that felt the next morning,but a similar sort of feeling.
Eventually, I can slowly begin to move, and I slowly get up to put on Toystory for my daughter, lightly massaging my forehead. I slowly once feeling steady on my feet, walking to the bathroom to look in the mirror. I’m not sure, but I think my head is looking a bit swollen on the left side . Right side eyebrow and temple feels like it’s bruised, I think it possibly looks like it,but honestly, I think I’m just looking for something. I don’t take anything, I’m fine.
9.10am, the headache feeling has now returned to being localised to just my right temple. Walking back to the lounge, I become light-headed. I’m not sure if this is normal healing process , where I’ve not been getting any sleep until the early hours, broken night sleep last night, lack of fluid yesterday- I defintely didn’t drink as much as I probably should or what I usually would consume in a day. Or if it’s just everything catching up and taking its toll. Besides this, I’m feeling absolutely fine.
9.20am- I’ve got a much milder version of the localised headache beginning to re-emerge on the left. My neck is a little achey too when I turn to the right. I’m wondering if it could possibly be where my hair has been up day and night since Monday evening/ early hours of Tuesday morning ?
Throughout the day, I expirence these headaches,but nothing on the scale of when I first woke up. Today has been a family day at my parents, I drove to theirs as I felt fine tp drive,otherwise I would have walked or asked dad to pick us up. I noticed I could turn my head to the right when driving which is great as I’m not having to full body twist though this was only a few minutes drive ,I’m not sure if this would be the case for longer drives yet.
After dinner at my parents we headed to a local garden centre to see father Christmas’s reindeer that had popped in for a visit and completed a kids scavenger hunt to help a snowman find all of his festive friends where the children then received a free prize of their choice of a wooden shaker or a wooden set of bells. Of course, my daughter chose the bells. It was super hard when my daughter wanted me to lift her up to see the Reindeer and having to keep asking my parents to do it, as I’m not allowed to lift her.
I had a bit of a silly moment late this afternoon, when I was looking at some gifts my mum had got my daughter for Christmas. The gifts were stored under her bed (it’s one of those that lifts up). I caught my head… only ever so lightly on the base of it ..ouch.. I barely touched it, but that teeny tiny knock was a slight ouch. I’m not sure where exactly I knocked it due to the numbness, but I think it was just above the implant.
This evening, the area is throbbing slightly, nothing awful ,headache still ongoing, and I’ve felt a little bit sick, but I’m absolutely fine and certainly not reaching for any tablets. I don’t think it looks as red or swollen today compared to yesterday, but it is certainly sensitive to the cold as noted again when going out this afternoon, also actually from day 1 I’ve noticed this sensitivity whenever I open the fridge or freezer as both doors are on the right , that creates an odd sensation of sensitivity. I’ve also noticed the ringing sound is back this evening .
Day 7- Monday 4th December 2023
I know I said this yesterday, but I honestly can not believe it’s been a week since the surgery already. I genuinely don’t know where that week has gone ,it’s absolutely flown, not sure if it’s also where I missed some of Monday evening where I was under the anesthetic and then where I wasn’t home until Tuesday evening that it’smade tge weekfeel likd it’s gone fsster,or if it genuinelyhas just gone fast ?
I’ve woken on the sofa again this morning. I’m feeling absolutely fine today. The headache has completely disappeared as if by magic. Perhaps it was just tiredness and everything catching up with me after all? I was definitely in two minds last night. I had woken again this morning, like yesterday, whether to message Joe lr to get in contact with the hospital, but all seems well.
Today hasn’t been a particularly exciting day , nursery run this morning before walking into town just for something to do to pass the time. I was due to meet mum and her friend in town for coffee, but I talked myself out of it as I knew mum would be coming over later and did she really want to see me twice in one day? Instead, I just wandered aimlessly. I should have gone for coffee, really. I noticed again today that the implant area is sensitive to the cold despite layering up. Admittedly, it is a little windy out today, which possibly doesn’t help matters, especially as it keeps teasing to rain but doesn’t actually come to anything.
Today, I’ve had a little bit of soreness/tenderness on and off , its not sore/ tender as such but this is the best way of describing it.I originally believed the soreness was above the implant and down behind my right ear,however, I recorded a quick video for my Instagram and tiktok. Upon watching it back to add captions, I was surprised to realise that the soreness is more to the back of the implant, and nto where I had thought at all. There are still areas that are completely numb , so I think this is why I didn’t realise where the soreness/tenderness was coming from .
My hair is officially doing its own thing and doesn’t want to be tamed, although greasiness wise surprisingly were all good I’ve not yet had to use any dry shampoo ,which I’m super impressed with. I’ve likely jinxed myself now by saying that.
goshgurl95 