Many people will know I’ve been in hospital for 9 days with my daughter who has had a femoral bone shortened to help ease the pain of hip dysplasia . She has never been able to weight bear properly so her hip sockets have never formed properly. This meant her legs were sitting outside of the hip. She had an adductor release some time ago but it failed in one leg and left her with subsequent problems that lead to increased pain. The pain got to a point at which we had no option but to consider this surgery for her. As this is a long post I’ve tried to break it in to sections a bit.
The hospital part,
I had a bad feeling from the start, the ambulance was late, then when we arrived a little time later than the specified time on the letter, we were told they weren’t expecting us at all until much much later that day (in the evening), then I noticed a health care assistant couldn’t spell a few simple words when filling out a form. Silly, little things really, in the scheme of things they didn’t really matter at all and now all they do is add to the catalogue of failures and inadequacies that ensued throughout the duration of our stay.
My daughter’s surgery went to plan, despite both myself and my husband having to be allowed in to the anesthetic room so they could send her to sleep. We had to effectively pin her to the bed as she fought the anesthetic mask for as long as she possible could. To be honest, although that is awful I was just very grateful that the aneatheatist let us both be there with her, normally only one parent is allowed but he was a nice guy and thought it might help her.
She came out of surgery late Thursday afternoon. On Friday I met the pain team and they discussed a management plan, Ibuprofen, Paracetamol,Codine, Diazepam and Tramadol were written up as possibilities (she’s allergic to Morphine). First thing Saturday morning her epidural was switched of & she threw up her morning medicines, her anti seizure medicine, muscle relaxant and her ibuprofen and paracetamol. She started to be in A LOT of pain. She was in such a state and it took HOURS to get pain relief for her. She had to be given it in suppository form. She still didn’t settle well though. My Mum and husband had been with us all day thank god but they had to go home later that day. In the evening Paige then became very poorly. I spent 2 hours just holding her various limbs that were tremmoring so badly and just wouldn’t stop. I started to feel very anxious and managed to speak to a nurse and get across how unhappy I was. Paige then also started having muscle spasms where her whole body would jump like she’d been given a shock. I was then asked about her neurological background (she has a large aneurysm in the center of her brain, and has had a previous bleed in the brain). They then decided to issue the diazepam to help with the tremors and said if they didn’t settle they may need to beep an aneatheatist.
I was pretty distraught by this point, my Mum came back and sat with me for a while, the diazepam started to help a little and she became slightly more settled. The next few days proved to be even more of a nightmare. The pain team came in on Monday and showed me the gap in her pain relief chart and asked me what had gone on at the weekend and then told me I’d have grounds for a complaint. It was taken to the ward sister and nursing practitioner. Then I had nurses telling me we’d be going home the next day, consultant’s telling me 10 days at least. In the midst of all this her medications could be anything up to 2 hours late because a nurse hadn’t read her charts also sometimes pain plans were apparently not written up and added to her notes.
My daughter had to be cathaterized at 2.30am one morning, something that was very hard for the nurses to do as they couldn’t move her legs in the usual way (& incredibly distressing for Paige). At one point I was told they thought she wasn’t passing enough fluid and to keep making her drink as much as possible. Then it turns out she was and in fact she’d by passed her catheter.
It took 2 whole days and one night of me asking for them to finally get around to getting my daughter a simple suppository sorted despite me saying her bowels had not opened for 5 days!!! and that this would be compounding her pain.
Then came the physio’s who despite the immense pain my daughter was in was wanting us to bring her slings and chair in and get her hoisted out of bed and sat in a chair. After one physio session where she’d been sat right up and was tremmoring very badly I was told to leave her in that position for as long as possible. Thank god a decent nurse was on duty that day and agreed with me that she couldn’t be left like that for any length of time and we laid her back down. I would NEVER hinder or impede my daughter’s rehabilitation, I want her rehabilitated and able to sit back in a wheelchair more than anyone else in this world, but I could not agree with the speed at which they were wanting to ‘get my daughter moving’ given her pain wasn’t even under proper control and that prior to the surgery she’d hardly been able to move with out pain either.
I went to the nurses station in tears one evening, 3 or 4 nurses were sat there and I was asking for Diazepam that had been due at 8.30pm and it was now 10.20pm. I got very upset (in tears), their reaction ? they sat and stared at me and said they’d see what they could do. I said I’d be speaking to my daughter’s consultant about things as I wasn’t happy with how things were being managed, I then felt ostracized, I sat and pulled the curtain round my daughters bed and sobbed. I didn’t even want to walk to the toilet as I couldn’t face any of them. I don’t know if they didn’t notice or didn’t care. Either way I actually think they shouldn’t be in the nursing profession.
I asked to be discharged early with my daughter. They had wanted me to stay in there with her until she could be hoisted in to a chair with out pain. Well considering we got out last Friday and she still has pain, just how long were they planning on keeping us ?
She is much much happier at home and I am now managing to do small amounts of physio with her and have got her sitting up numerous times now with out pain or tremors. I insist she does her physio as I am fully aware just how important it is, but I go at her pace and I LISTEN to her. Something no one had time for on ward.
When I left with her on Friday (in an ambulance) her medication was due in about 30 minutes, I was given bags full of medication and told to give it to her in the ambulance on the way home. So rather than her having being able to have her pain relief before we went on the journey it was a case of do it yourself en route. I’ll be honest though, I was so pleased to be getting out of there that I took the bags and ran.
I should add I’d pretty much administered every dose of medicine she’d had there myself anyway, she didn’t like the nurses doing it and when one did she got more of the medicine on my daughter’s bib than in her mouth. Also I popped to the loo once and on return found Paige screaming in bed because a nurse she’d not met before was about to give her her medicine (this is a child with extensive global brain damage).
I would sleep the odd hour here and there at night but I gave her all her medications through the nights. I slept once from 6.15am til 7.30am and a nurse said that I’d had a lie in. Thing is, after being awake for night shift myself I wasn’t then going home for a sleep during the day unlike the nurses so they could return to night shift refreshed. No, I had another day of trying to comfort my daughter through her pain, trying desperately to get fluids in to her (when she was refusing). Stopping leg tremors, discussing pain plans, chasing medication and much more.
I did get one night and day at home (thanks to my Mum) and I got an air mattress fitted on Paige’s bed ready for her return and had to change some furniture around in her room.
When I left the hospital on my own with her on Friday I was a bag of nerves. When I got home my husband had to go in to work, so I got her settled and then started to unpack medicine bags and draw up pain management charts and plans. I’ve been sleeping in her room with her and my Mums been helping out whenever possible (she has another job) but is doing some nights for me too. Just so I can get the odd full nights sleep.
Paige’s physio has been out and is very pleased with everything we’re doing. Her GP has been out also and I’ve shown her the charts we’re keeping, we’re even doing her oxygen, heart and temp levels. Paige is working well with me because she trust’s me, she’s allowing me to roll her on to her side, to move her legs and to get her sitting at a higher degree. She still get’s a bit of break through pain but 10 times less than she did at hospital. We’re under no illusions though, Paige’s recovery will be one step forward two steps back in places, we’ll just have to keep going and it will take months.
It is so good to have Paige home, it is however an immense responsibility. I feel that if she does or doesn’t manage to sit up again in a wheelchair that it is solely down to me and the rehabilitative care and pain management I’ve provided. My Mum helps a lot with this, she is fantastic, it’s just that as Paige’s mother, I feel that ultimately this responsibility lays squarely on my shoulders.
I’ve spent a few day’s feeling extremely dizzy and suffering with nausea, and the other day I was actually physically sick. My Mum was here so sent me to bed for a few hours which seemed to do me the world of good.
I’ve looked at photo’s of myself on my phone these past few days,trying to see who I was just 2 weeks ago, because it feels like 2 years ago. I spoken to professionals and I guess it’s not impossible that I’m suffering either PTSD or nervous exhaustion. I feel anxious, very anxious about the smallest things, I feel insecure about everything (even a bit paranoid, as in I keep thinking I’ve forgotten something or that I’m being talked about), I keep having frequent flash backs of being on the ward, I still feel very dizzy, I get chest pains where my chest feels so tight it’s hard to get air. I can’t yet face writing a formal complaint. I feel like I want to run and keep on running at the thought of returning to that hospital. I feel guilty about everything, about my daughter & what my whole family are going through and sometimes I can only think things, write them down but am unable to say them out loud. I want to be by myself, just curled up in bed. My daughter’s physio was right I think, she said it’s that fight or flight scenario, I fought and it didn’t work, I was let down, so now I’m wanting to do the flight part.
I have not taken to my bed, I am keeping appointments, I am facing the world. I am cooking tea for my children and I am listening to them read etc. I won’t let the way I am feeling defeat me for their sake. All this said I am most definitely not fine at the moment, despite that being my standard response…when people ask you what’s wrong do they REALLY want any other answer than ‘I’m fine’. Rarely I think. It’s draining for other’s to hear you say still 10 days later that ‘no I am not fine’. Truthfully I don’t think that in just a few day’s time I will be fine either. I’m consumed by this responsibility. I need to get my daughter back in a wheelchair, I know people say take time out but I can’t. If I go out for 3 hours and my daughter needs her nappy changing then my husband who is her step dad can’t do it (she’s a teenage girl, it’s not appropriate, it’s not that he just wouldn’t). If she get’s an episode of break through pain then I need to be there to manage her tremors and possible body spasms immediately. So I’m not planning a night out, afternoons shopping or drinks with friends. Those are the furthest things from my mind for the next several months I imagine. I am simply 100% committed to just getting her through this time & being here for the rest of my family. This is realistically going to take months and months and at this moment in time I’m not sure when I will feel ‘fine’ again to be honest. I feel like my whole world and everything I thought I knew has been turned on it’s head. I’ve never been the most trusting of other people at the best of times, but all I can say is that my general distrust of other human beings and in human nature has taken more than a battering. I feel like one of those rescue dogs, who wants to bark at and bite everyone rather than be comforted by anyone.
Others & other news,
I should mention my husband in all of this. He has been amazing, as have my in laws who have helped so much with childcare, and my Mum who is here for us as much as she is able. They have all been fantastic, I am very lucky.
My children too, while I’ve been away my teenager was brilliant, she even cooked tea one evening (spaghetti bolognaise) and went up a level in Maths, my 8 year old won 3 awards, and the other’s did very well with out me too.
Also, my husband decided to transform our bedroom for me as a surprise while I was in hospital, new carpet, decorated, new furniture etc. The room is beautiful & it was an amazing thing to do whilst looking after 5 children, working and fitting in trips to and from the hospital. Tonight will be only my second night in it since it was finished. It will be lovely when I get to spend more time in there and enjoy the fact I at last have a dressing table !
Before I go, I’d like to thank some very good twitter friends for all of your kindness and support, you know who you are and thank you to Debbie who I met on Mumsnet also. Lastly a very big thank you to (I won’t out her and use her real name so will stick to her twitter handle) Sarcasm Queen. She kept me company through my phone for hours one very long lonely evening.
Well, that about wraps up these past few weeks. Paige is worth it all, I do the same for any one of my children, just like any mother would. That’s one thing all parent’s have in common, I’m no different so when people tell me I’m doing great I know I’m only doing what anyone would. The world is a very strange place, so many people idolize celebrities, models, singers, sports people for their dedication etc. If society is looking for people to admire then go to one of these wards and see these parents and families nursing their loved ones through the very worst of times, not out of choice, not even out of duty, just out of love. That’s what I saw. Those are the people who should be stood up holding gold medals. They’re not dedicated to a personal goal, they are selfless. Being there was like living in another world.
If you’ve stuck with this post this long I have just had some VERY good news I will share before I go. I WON, I have got my son a place at the SEN secondary school I wanted to send him to despite it being in another county. That evening I spent in tears amending his statement on our holiday was worth it. I know this school will be the making of him, feels a bit like I’ve won the lottery
Thank you to all that have taken the time to read this. Paige is happy and comfortable in herself most of the time (when she is not being moved for personal care or physio) and she has her sense of humor back. She has made me promise to take her ice skating in her wheelchair when she is able…just to laugh at me falling over despite once having being an actual figure skater (can’t stand up on the silly ice these days lol). I will do the odd post just keeping you all posted on Paige’s progress, she is amazing…and that’s not just because I’m her Mum that I think that