Held together with Zip ties.

I am currently propped in my bed with Wonder Woman playing on the TV. My right leg is sore, painful to the bone but slowly getting there. Would you like to know how I got here? Are you okay with slightly gory post operative pictures? Yes? Read on! No? Close the window and find something else to read!
Last Tuesday I was up before the household, quick shower and final pieces packed and off I went, early enough to catch a night bus to the station. Travelled on the tube with the retail workers and work boots and tool boxes. My mohawk sans produce tucked up in a turban and a totally comfy but weird slogan for the day hoodie and I arrived early to UCLH. (University London College Hospital)

In totally British fashion there was a queue at the door as the department did not open till right on the dot of 7am. Peed in a cup and was told I was the first on the list. Which was a surprise but good. Went thought the standard medical questions and the nurse went off to get my gown and assorted gubbins. She returned with the news there was no bed for me at the moment and I would have to wait. No idea how long that would be and that generally these things resolved themselves. I hoped so, having to rearrange all the arrangements we had made would be a pain. The Anaesthetist arrived and was very pleased that I would rather a spinal over a general anaesthetic.

I sat around for a while, and Mr Gin joined me after dropping Squeaky off at childcare. I met Mr Hutt’s Fellow (possibly Registrar) and we signed forms and again I was told they generally sorted the bed issues out. While we waited in the waiting room Mr Hutt dropped in to say everything was ready to go ahead, all the bits assembled. He thought there was a bed but the surgery wouldn’t happen till the afternoon.

I was taken up around 11:30, dressed in the hospital’s finest gowns. I walked to theatre, this something if found interesting, normally there is a wheel chair or bed involved. I left Mr Gin behind, he wouldn’t be there when I got out as he had to pick up Squeaky.

The spinal went smoothly, both Anaesthetist , Mr John Dick and Chris (missed the last name) were lovely, apparently I sat very still but to be honest I didn’t feel it at all. Good work. Mr Hutt was relived that I had selected to be sedated, personally I didn’t want to be awake, nerves would make me extra chatty.

The operation was a bone graft, a piece of donor bone was to be attached to my femur with wires. The medicine/science is that the donor bone should grow into my bone and make it thicker, hopefully this will take the pressure that I can feel and spread the load. Thus hopefully lessening the pain from the stem tip that is resting against the inside of my femur.

I woke in recovery, a bit fuzzy and sore. Lovely staff, as always, recovery nursing staff tend to be the most attentive, I am assuming that recovery is a place that you have to be on your toes. I call Mr Gin, because they realised there would be no one to meet me and I really wanted to let him know I was okay. I had a lovely chat with a Filipino nurse, we talked about being a long way from home and the British weather. Then I was very proactive and threw up my nice short bread biscuit in a vomit bowl. I was feeling a bit dissociative which was to be expected but this nausea was not something I have had with a spinal. I was given a drug to help and then a swift and slightly painful bed change because my bladder was not really there so to speak and throwing up set it off. My blood pressure was low as was my heart rate, this was little bit weird, it is not a rare side effect of a spinal but the heart rate was causing concern. I needed to drink more water. Another nurse came in, a fellow who obviously spent a lot of time in the gym. We had a conversation about my gym experience as a 40 tiny woman compared to his as a hefty nurse. He felt my lower heart rate may result in being fit. (I am not sure if he was being nice, it is odd being called fit by a medical professional.)

I was taken up to the tenth floor where I was looked after by an amazing Irish nursing assistant called Kathleen, she found my home so I could call Squeaky which made me cry. She decided that a slightly nauseous, weepy, Australian mum needed that phone quickly and located it for me. She also took away the sausages and mash that landed on my table that really didn’t help and found a sandwich. Small things that helped. I rewarded her by throwing up the sandwich but in bowls, sadly still required another bed change. Another anti – nausea drug and pain killers followed. My temperature was low, not sure why, the nurses covered me up in blankets and tried to get me warmed. I was surprisingly in a single room, I was warned I would be moved onto a bay, which was fine, but I was happy to be a in a single room for the first night, feeling as spaced as I was.

A friend, H, who worked locally came over after work and sat with me for a bit. We looked at the amazing view over London but I have very little memory of the conversation because the combination of three anti-nausea meds, painkillers and wearing off sedatives really made life interesting. My blankets began undulate on their on accord, looking like that they were breathing. It wasn’t a pleasant experience but I think H thought it slightly amusing!

She left and I dozed for a bit. The downside to low blood pressure is that nursing staff want you to drink water, that in turn means that you need to pee and then that means bed pans! Ack, and getting onto those bastards is hard with a very stiff and painful leg! I hate, loathe bed pans. End of subject.
In the morning, the Surgical Fellow I met before the surgery arrived, looked at the scar, which is lower than my replacement scar, and felt that as long as the physio team agreed and I got an x-ray and that looked good I could go home that day. That was a little bit of surprise, we were expecting a bit longer and if we could get out in the early afternoon it would be all fine. My temperature was higher but blood pressure a touch low.

The Physio arrived, a lively lady named Stacey, arrived with crutches. I had morphine before she arrived in anticipation of this being tough but I was so ready to walk to the toilet it wasn’t funny. We went through a refresher of crutch using and I gently stood up. I then swore, a lot, it fucking hurt but manageable. Mr Hutt had told me that it was likely to be more painful than replacement, he wasn’t wrong. So, up I got, I was going to pee. I turned and my ears began to ring, my head felt tight and I felt really hot. I realised that I was going to faint. I told Stacey that I had to sit down, rapidly and she told me to lie down. She then harassed the bed to get my head lower than my feet. She was quite concerned and checked my blood pressure, which was low, not very low but a bit of concern and my colour was extremely pale. More goth than goth.  The Physio decided that I wasn’t going to be discharged the day with low enough blood pressure.  It took a while for my colour to return.

Stacey decided she would come back in the after lunch to see how I was going and do walking and stairs then. Annoyingly I was to stay in bed until she came back and that meant bed pans.

Mr Gin visited with snacks and I perfected some origami as we waited for the x-ray and physio. The Pharmacist dropped by and discussed drugs, including one that I had not tried before.
Dihydrocodeine, first test to see if it made me throw up and if it works.  During the day I ended up doubling it up with morphine as the pain was pretty full on. In an attempt to feel more human I changed into a nightie of my own which helped.

Stacey the Physio returned and I was fine with the crutches, although the leg was sore, I was happy to give it a go. We did not do the stairs as there was no wheelchair but I wasn’t going home anyway because the x-ray had not happened. But I did not have to use a bed pan so I did not care!
So, Mr Gin went off to pick up Squeaky and H dropped in before she went off a meeting. I was nice to have her company, we admired the view again and I wandered around a bit on my crutches. She headed off on to her meeting and I settled in for the night after saying good night to Squeaky. By 9:30 I was struggling to remain awake so I went to sleep.

The morning was an early start with the Physio turning up before the joy of the pain med cart. I walked on my crutches to the stairs, the leg was very sore but I was going to do this, I miss Squeaky and my bed. (I missed Mr Gin too, but I was seeing him.) There was two Physios and we went up and down a flight of stairs. Oh boy, it hurt, my leg is so stiff, the femur hurt a lot and the incision was tight. I did it though. I got back to my room and Stacey was a gem and located a some morphine, I was very pleased to see it. It takes a fair bit to put me in tears but there was I lying on the bed sobbing but after a while it settled.

Stacey was happy to discharge me, now it was only an x-ray and we were golden but considering they had ordered it yesterday, I was a little worried. I had a pain free nap and an entertaining time doing origami feeling floaty.

The x-ray happened and I got to see the hardware, I have five metal zip ties attaching someone else’s bone to my femur. No wonder it hurt! The x-ray technician thought I was brave, which not what I would call it.  There was a dressing change and the unveiling of the incision, it joins my replacement scar which means it that is one very long scar! The nurse said it was very neat.

The time was slipping away and Mr Gin had to go and pick up Squeaky. Thankfully the lovely R was pleased to duck out of work and wait with me while I butted my head against the wall of hospital policy about not prescribing oramorph. I was not happy with the pain management of the codeine, ibuprofen and paracetamol combo. It removed some of the pain but I wasn’t overly comfortable. The doctors suggested that I stay another night but I wanted to come home and hug Squeaky.
In the end I left with R and we had a bit of a tough time getting a cab due to being officially discharged at 5 pm. Getting discharged from hospital is unbelievably complicated and time consuming.

Home was lovely, Squeaky was lovely and it was good to see Mr Gin and eat real food. All in all it was a very different experience to Epsom and I felt it was odd that I only saw Mr Hutt once.

Cast free, Bracing for walking.

It has been a while since I have posted, family and work life has been stressful but not for hip reasons.

Squeaky is doing really well. The cast came off over four months ago. It was a day that proved to be tough but wonderful. He was very mobile in the cast and had got crawling in it down to a fine art.

We arrived to the clinic and of course there was the x-ray. Then into see Ms Bijlsma. She was very pleased with the position of the hip but the socket is still a little shallow. This meant while we were there Derek the Plaster Technician would be fitting Squeaky for an Abduction Brace to be worn at night (and naps but we agreed that the poor childminders could have a break) for three months.

Ms Bijlsma

Ms Bijlsma added her note to his cast and we went to get the cast off. We had headphones and a phone loaded with “Hey Duggee” music clips and two parents trying to make it as easy as possible. It was not as bad as previous times as the novelty of the having the phone given to him was a difficult thing to ignore. He was still very upset but that first cast free cuddle was wonderful, the weight difference was astounding.


Derek told us that Squeaky would be stiff and his skin would require extra attention for a while. His skin was discoloured and flaky, the likes from the plaster liner clear on his skin. He also was very smelly. As was the cast, which we took home!

Skin after the cast came off.

That evening after a long warm bath with his Dad, Squeaky tried crawling, such a little champion and determined.

We will not miss the plaster; it was the hardest part of this process so far, hard physically and mentally. Best core exercise I have ever done but draining. He has a longish scar to show for it and hopefully that is all!

We began bracing straight away, we have had a couple of nights where he got uncomfortable or it was way too hot to contemplate the long PG trousers
Over the next few days he started to commando crawl and gaining strength to crawl “properly”.
Over the past months he has moved from crawling to standing to confident cruising to toddling with something to push.
 At three months after the cast we had another check up with x-rays. The angles are slowly getting better but Ms Bijlsma wants him in the brace for another three months. She also felt that shoes would be a good idea to help with walking. He is 18 months old now, a little behind his peers but we are not concerned with that, he has moved from complete relearning crawling to cruising in three months.


Walking will put pressure in the hip too and help with the angles and forming the ball of his hip.
We are not out of the woods yet but we are getting there, next solid walking in his new shoes and running for the edge of the woods.

The final stretch

We are over three quarters of the way through this plaster journey.
I will admit to being well over the plaster. It is heavy and awkward; it is taking a physical toll on both Mr Gin and me. Mr Gin’s back is suffering and my hands are painful. The positive notes are Mr Gin’s biceps are bigger and I can do 30 second planks.

Squeaky himself is amazing and very resilient; he is crawling, commando style in the cast and getting into all manner of fun. We have started child proofing our cluttered older parents’ home. Moving all manner of bits and pieces and putting them away from prying and curious fingers. He also has recently learnt to flip himself from his belly to back, so strong!

We have found the whole thing a steep learning curve and were very thankful for those who shared their knowledge with us; we are passing on what worked for us.

Smell and nappies.

Leaks of wee are unavoidable, having a boy I think even more so.  Having use cloth nappies before this I found the waste hard! It took us a while to work out the size of nappy we needed. He was a size 4 and we started with 2s but settled for 3s when the swelling came down. Tip one is don’t buy nappies in bulk until you are sure you have the right size, too small or big both cause leaks.

When we had lots of leaks we were recommended adding extra absorbency through sanitary napkins or incontinence pads. This was not something I was keen to do, more waste and cost! We found we could add our cloth nappy boosters into the disposable nappies. I was thrilled with this as it solved our overnight night leaks along with waking him just before we went to bed for a nappy change and no longer offering bottle at night wake ups.  We also have the cot on a gentle angle at the recommendation of the hospital.

As Squeaky is a lad we discovered that making sure his bits pointed down was vital after a couple of astounding leaks. When you have to push the nappy up into the cast it is easy to drag his bits with it. This leads to weird situations and questions you never though you would ask your beloved when doing two handed nappy changes.

So, you can imagine the spica cast began to stink as we learnt all the tricks; we use febreze and Teatree oil to mask the smells. We have an added issue that Squeaky is scared of a hair dryer so we can’t dry it out like that. We mop up with dry flannels and then spray febreze on the nappies and Teatree on the damp cast. Tea tree oil is antibacterial so helps a lot.

We came home with a second disposable nappy on the outside and I quickly bought second hand cloth nappy wraps that have served us well keeping in the tucked in disposable in place. And of course they get febreze too!

Play and sitting.
We started with beanbags for sitting before Squeaky had his surgery and found them very helpful but difficult for him to play in. We got some lap trays but they are proved to be a little tough for a one year old. We still use the beanbags although we have to be careful of him wiggling out of it and flipping himself!

We have a cot mattress for the floor that makes it easier for him to lie on his tummy and he napped on early in the process but we have not used it that much.

What we have used a lot is a Spica Chair that we hired. Many people have one that family have made, we had a look on eBay for second hand one but there was none. The Royal London had a pamphlet with a link to the Smirthwaite Company who has a hire scheme. They are British owned company who make an astounding range of chairs and stuff for people with special needs. The chair has meant Squeaky can sit and play and  be comfortable (until he tips himself sideways!) It has been a boon since he started crawling as he can be contained for periods. I love to take it in the kitchen while I cook. I put his pots and pans on the table and he is chatty and throws them off when he thinks I’m ignoring him. It wasn’t cheap but it was half the price of buying one.

When we bought a high chair we researched one that would work for the Spica Cast, it is Joie Mimzie and it has worked well for us. Out and about we use a knee. There really are no other options and we cope fine with that.

Sleeping

Squeaky is a tummy sleeper and when he came out of surgery it became clear that we needed to get him comfortable and on his belly meant a lot of propping up with towels and blankets. When home that moved onto an Ikea pillow but it was a bit narrow. We used a variety of different things and it became clear they were all lacking, so I got crafty and made a pillow. A sort of Y shaped one. This has served us very well, it is narrow enough that his legs can hang and his tummy  supported and wide at the top for cuddling the pillow, it is not dissimilar to the way he sleeps on his parents.

I also looked at Sleeping bags for Spica casts and decided it was not a cost I could justify for three months so drafted a pattern and made one myself. Not pretty but it works!
We also have raised his cot to newborn level as he can’t sit to save our backs.

Clothing

We got given some Hip pose Tracksuit pants that are designed for Spica casts, for which I was very grateful for. With help from a friend I made a pattern and made some more exciting ones from cord and Jersey.  (Also I have had to repair the knees from Crawling.) We also have two dresses, dresses are awesome and great for nappy changes and show off his cute nappy covers! We used dresses in his Palvik and we were keen to do it again.
We also tried Marks and Spencer's Palvik trousers but they don’t go big enough for a cast but the high legged body suits are perfect and don’t stretch the legs. We also used body suit extenders on our normal bodysuits.

My only other hints are reach out for support, find people on line, talk to your friends, take your kid out, be prepared to explain the cast but get out. Take photos, I have written a hip journal for Squeaky in his future as my mum cannot remember my journey.   It is hard work, physically and emotionally and Mr Gin are looking forward to the end of it.

Half way there.

Written a week ago...

I'm currently on a London bus with Squeaky and Mr Gin. 

We are off to the Royal London Hospital for the cast change. The end is nigh for our purple cast. It is good it is going. Squeaky is growing fast and it is obviously getting too small. His belly button was hidden when he first went in it. Now it clear of the top of the cast.

It has been a journey. It took two weeks for all of us to settle into a routine with the cast. It was not dissimilar to the first few weeks after he was born, sleepless nights and tears all round.

The shining light through those days was the check up after the operation. Ms Bijlsma was very pleased. So pleased, she waited at the door of her office to tell us it looked good. The x-ray shows the ball in a good position. The socket looks a bit shallow, so there is a possibility of a brace after. Only at night though.

The cast has been a learning experience at a very quick rate. It took a lot of nappies to sort out the right size. The swelling created issues to begin with. We also had a number of leaks. The general advice it to use a hair dryer to dry the cast. That was okay except Squeaky is terrified of noise, hysterical crying and shaking.

This has meant we have had to make do with flannels to soak most of the wee. This lead to smells and a two pronged attack of tea tree oil and a popular fabric deodorising spray. It still smells. So glad to see it go.

Later in the day:

The cast has been changed. Squeaky did well, he has very little reaction to a general anesthetic besides wanting cuddles and sleep. He is such a resilient kid, it makes me so proud. He was much better once he had some snacks.

Annoyingly the opening for his nappy was right over his bits which meant a trip to see the lovely plaster technician, Derek. He made the hole bigger but it is still awkward. Also the cast is white. Meh.

We were finished by lunch and as we had all been awake since 5 am breakfast was long ago so we headed to the restaurant. Squeaky and I shared lunch with him perched on my knee as we ate shepherd's pie. High chairs out just don't work.

We headed home, Squeaky with his pristine cast and Mr Gin and I relieved we are on the downward stretch of this journey.