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/

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!

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.