Left of Field

Again another hard post to write.

Squeaky is two! Walking, running and climbing. A chatty, happy and boundary pushing toddler who adores vehicles and anything with wheels and hugs and kisses.

We had a second check-up without Ms Biljsma, I went without Mr Gin, because we are just being monitored after being released from the abduction brace.

There was an x-ray request that I wasn’t expecting but I had dressed Squeaky in clothes that made it easier just in case. The x-ray, as always wasn’t fun but he is getting less distraught with them.
The consultant we met was Mr Manoukian. A face I had not seen before. He looked at Squeaky walking and I commented about the intermittent toe walking that he does. Then the normal check of range happened and Squeaky had a good old giggle.

Then I looked at the x-ray. The ball of the femur has almost caught up with the right in shape and bone mass. But Mr Manoukian felt the hip looks like it could be slipping out. When checking his movement the left abduction feels tight as well.

Mr Manoukian said he would consult with the team about what they should do, he felt a general anaesthetic to relax Squeaky and inject the joint with dye to see what it looked like would the first port of call. With a possible Pelvic osteotomy.  He would call us in a week to confirm if they would do anything as it seemed to sitting on the border of intervention.

I called Mr Gin at work with the bad news.

This was two days before Squeaky’s birthday.

The following day I had an appointment with my surgeon, I showed him Squeaky’s x-ray. He said he didn’t do paediatrics but that it looked like it was slipping out.

The red circles show the three months ago and recently.

The following week we waited, and then I called the Royal up and finally sourced a direct dial number. I left a message via the secretary and we got a call the next day. The team had looked at the x-ray and felt there was not need to do the arthrogram and Mr Manoukian had a surgery date for a Pelvic osteotomy and possible femoral osteotomy. The pelvic wiII require bone grafts from other sites inside Squeaky and the Femoral would have metal work. That would have to be removed in 12 month’s time. There would be another Spica cast for (just) six weeks.

It was 12 months since his last surgery to the day. I may have sat on the floor and cried. Mr Gin did the same, at work.

We have approach Great Ormond Street Hospital for second opinion from the senior CDH/DDH specialist there. We have been accepted and are awaiting a date for this.

At this moment, Mr Gin and I are planning that this will go ahead but trying not to put our lives on hold. For the moment, the surgery will happen on the 6th of April.

My feelings are mixed and wide, this has been awful because we thought it was going okay. More surgery was not in our thought processes. My questions now to surgeons will always be, what happens if this does not work.

More information of the procedures.

https://hipdysplasia.org/developmental-dysplasia-of-the-hip/child-treatment-methods/osteotomy/

Broken surprises.

It has four years since I had the replacement and four months since the bone graft.

Recovery from the graft is proving to be interesting, more difficult than I thought and with a surprise that my surgeon has never seen from this already unusual surgery.

I had a check up six weeks ago and I am still processing the news, the x-ray showed that I have fractured the bone graft. Clear through middle, where the stem tip hits the bone. We are a bit of a loss as to how this has happened and what this means for the success of the operation. It is gutting.  The unknown of this is a bit tough.

The recovery has been difficult with stiffness and flexibility. I am finding it frustrating and depressing, having a toddler around has made extra hard and I am thankful he came along after the hip replacement! It may have been easier to put this off till Squeaky was in school but we have so many other unknowns this had to be sorted.

I had four Hydrotherapy sessions and they helped. I am finding being focused on the physio difficult and really need to be better. I find I can lift and carry Squeaky but a bit loathe to run after him and he is running! Everywhere!
I need to find some motivation and not let this fracture drag me down and hope that my bone merges in with the graft. I need this leg to be back to normal regardless. I have to this but am so worried it is has failed and all this pain and the lack of flexibility is for nought.to write this a few
I have tried to be sparkly about this but am failing a bit. I am still off work and trying to get myself and this damn leg. Then forward.

Monitoring not treating for the moment.

The clinic has a lovely play area.

For the last week we have had almost interruption free sleep. It is astounding, wonderful and still a novelty. Last night Mr Gin and I were chatting and we realised that it is over nine months since this happened. We may get a full nights sleep but we were on average up four times a night, so sleep deprivation felt normal. I got to a point that I could not remember if I had got up but Squeaky had a different dummy or the such like that indicated I had been up plus being shattered! When I was very much out of action Mr Gin was up at least five times a night. So, this week has been bliss!

So, what has bought about this change? Squeaky is out the abduction brace! After six months in the brace at night and three months in the Spica cast we are not doing anything hip related treatment! This is brilliant because the last month has been a hard slog with the brace, he really was getting uncomfortable at night in it and at most he managed five hours before we had to take him out of the brace so he should sleep well. He was generally happy to go in the brace but it was increasingly obvious that he was getting unhappy with it.

We had the three months check-up last week and we both were hoping that because Squeaky had started walking that we could ditch the brace. We arrived in plenty of time to the appointment and went for the standard x-ray. This time we insisted that Squeaky have both his parents with him and as a result it was less stressful and much less upset on his behalf than last time. Holding your child down is never a nice experience but having both of us there meant it was a swift experience and he got Mummy and Daddy cuddles to help with the tears.

In medical speak his angles look good.

 We saw an Orthopaedic Surgeon, Nick, a new face as Ms Biljsma was on maternity leave. He checked out the x-ray which shows better coverage of the socket, also his walking is good, no sign of a limp and his movement feels solid, no shifting of the joint. He got in another consultant to look at all he had and they were impressed with the walking and the quickness he found a computer mouse!

We were told that we need to be vigilant for changes and any concerns with his movement we should get him in for another appointment. We will be back in three months to check progress and hope that there is no regression but the outcome of this visit is we are not treating but monitoring. I expect the monitoring will continue into his teens but it brilliant that we are brace free. Thinking back, we have done 11 months of bracing and Spica cast, this is almost half his life. Thank goodness it is over for now. Now for more sleeping through and learning to run and skip!

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.

I see dead people in my future.

I have had a bit of a time with planning my next operation. The timings all centred around Squeaky Cub and him finishing with the Spica. When we knew the Spica journey was coming to an end I contacted Johnathon Hutt at St Georges, only to find out that he was moving to University College of London Hospital to take up a position there.

This put timings out a bit and I had to think if I wanted change hospitals or surgeon.  After thinking I decided to continue with Mr Hutt and we moved hospitals and I saw him three weeks after he started in his new role.

To resolve the pain issues from the implant I am going to have a bone graft to hopefully distribute the pain that flares up and either reduces or removes it.  The pain is okay in the summer but winter it can be terrible. I ended up on my stick a couple days with a cold snap and it certainly was nagging.

This stem pain is a known side of the implant (S-Ron) and the bone graft should resolve it. If it doesn’t then I am going to lump it and chase a toddler, as the other option is a revision and I am too young for that. Neither I not Mr Hutt are keen on that option, because in his words, those replacements are hard to take out.  The graft will be donor bone, so prepare for dead people jokes and a push to donate your bits when you move on. (Tell your family.)

When I saw Mr Hutt, he was not sure what his waiting list was like and I have some plans coming up that we needed to work around. With some phone calls I sorted a date with the lovely scheduler and I have surgery on the 17th of September.  This could very interesting; the recovery shouldn’t be as long as a replacement but could be more painful to begin with. This could be interesting with a toddler!

I have had the pre-operation appointment and considering there has been no communication it is all go. Fingers crossed Squeaky is walking and we have begun planning, the logistics are a little worrisome.

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.