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.

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.

Let the spica journey begin

It has been two weeks since Squeaky had his open reduction at the Royal London Hospital.
It has been a roller coaster of a ride. 

We arrived at the hospital at 7.30 am with surprisingly chilled baby, even though he had missed breakfast.

We had met all the team. Dr Louis, the anesthetist, was amazing, calming and reassuring as Squeaky had a bit of a sniffle and said the operation could go ahead. Then Ms Biljsma and her team, we established the leg that required operating on and she seemed relaxed and happy. I said I was very keen on avoiding a femoral osteotomy. I know this was something that may have to be done but still wanted to avoid.
We were told we were first surgery and there wouldn't be long to wait. I took squeaky to theatre but we were sent back to the ward as there was no bed for when he came out of surgery.
In the end we didn't go to theatre till 11.30 am. Squeaky was very good and even napped although thirsty and hungry.

Surgery last 2.5 hours. I went to recovery, Squeaky was hooked up to a morphine drip and sporting a purple spica cast. It went down almost to his ankle on the left to just above his knee on the right. He was very upset but a mum cuddle soon sorted that out. He had a sleep in me as we waited for the ward nurse to come and get him.  Dr Louis popped in and said it went well. Then Ms Biljsma came in, she was very pleased, she said the hip went in better than she thought it would and that there was no need for a femoral osteotomy! I think a huge weight lifted at that point.

Sarah, the ward nurse arrived soon after and we were go to head to the ward. We collected Mr Gin on the way an and headed up with Squeaky in a huge bed and a morphine pump.

We got up on the ward and there was a visit from the pain management team and all the observations as well as Squeaky wanting to have cuddles. And with those cuddles as much as napping as possible.

We gave him food as soon as were allowed as he was starving. With food in his tummy he seemed more settled.

We played pass the baby and try to chill till after his dinner. Squeaky was really out of sorts and very much suffering with being doped up.  Mr Gin headed home to feed the cats and get some rest. I prepared for a night on an extendable couch.

Buckaroo on a dopey baby

It started okay, Clark settled and drifted off to sleep up kept waking. This continued with a lot of screaming and only sleeping on me. In the end it was decided to give him more morphine and some diazepam for muscle cramps. The spinal had worn off and he was very uncomfortable. He managed to pull out his morphine cannula which was a bloody mess but showed why they put two cannulas in babies, just in case they do that! It was a tough night being on a ward made it tougher.

The following day was a morning full of visitors, the pain management team, who where going to cut down his morphine with an eye for taking him off it. The OT fitted him into his buggy and gave me lots of information and was impressed with our organisation. A surprise visit from Dr Louis! The surgical team came in and agreed to make the hole around his bits bigger so we didn't have to fight to get the nappy in. The plaster technician was going to come and do this. Then for Squeaky, the best bit, Mr Gin arrived.

More cuddles, reading and playing happened. I went out for lunch and a bit of break while Squeaky slept and had lunch.

We waited for the plaster tech and got the morphine out. We then took Squeaky joy riding in his buggy! It became clear we were not going to see the tech so we had dinner and Mr Gin headed home.

I was a bit more prepared for the lack of sleep. We had some diazepam again but that hyped him up and he played peek a boo with himself for forty minutes! I managed to get him to sleep a little buy propping him up on his tummy. It was broken sleep after that and in the end I dozed on the couch with him wedge in but on me.

Mr Gin arrived early to rescue me and Squeaky played in the play room. We had a visit from the orthopedic team who chased up the plaster tech, Derek. Who some of you may remember for removing his other cast and fitting his palvik harness.

Once that was done it was a sign off from the pain team and the nurses and we could go home. I left the hospital about Lunch time and Mr Gin got Squeaky home for dinner.

A very long few days. More on the adventures with a small boy in a big cast soon.

Big hip, Little, cardboard box.

We have an operation date for Squeaky. The 5th of February. We have know a while but for a while it looked like we were going to have to move before the operation.

The end of October we had a consult with his Orthopedic Surgeon, Ms Bijlsma and I finally saw an x-ray. I really don't understand ultra sounds but I understood the x-ray. The left hip is obviously not in the right spot. The ball is forming slower than the right. The right is perfect thanks to the harness.

She explained the process and the slightly more extreme things that may happen. It is an open reduction, where the operate and move tendons and cartilage to coax the hip into place. One of the more extreme bits that may happen is a femoral osteotomy, which is where the femur is cut to release pressure on the hip joint. Personally I really want to avoid this as there chance of his legs being different lengths. Having grown up with a leg length difference due to a femoral osteotomy, I am very much hoping that we can avoid all this.

He will be in hospital at least one night with possibly up to four nights depending on how his pain levels are. He will be casted the same way as before, in a spica cast, waist to ankle on the left, waist to knee on the right leg. He will stay in that cast for 6 weeks, have it changed and then another 6 weeks. Squeaky will be curtailed but thankful as of this moment he is not really crawling and certainly not walking or even wanting to put weight through his legs, we are not sure if this related to the hip. Once he is out I am be wanting those little legs to working hard!

We are currently planning out what we need and how we will survive the 3 months. We have a bean bag and hopefully enough clothing to go over him and his cast. It is all starting to get real, I am doing my best to not to get nervous. We can deal with it comes but the build up is tough.

The Big Hip update, is I will be having surgery to sort mine when Squeaky is done. I have agreed that with MR Hutt.

A tale of two hips.

Hips, our lives recently have been revolving around these joints.

Squeaky had his closed reduction this week. It was long and ultimately disappointing day.
We arrived at the hospital at 7.30 after a very early start with a chilled baby, surprising considering he had missed breakfast. We got shown into the day ward and settled in with the standard visits from the anesthetist, surgeon and nurses with their repetitive but needed questions. We signed forms and Squeaky smiled at every one. We changed him into his huge hospital gown and waited to be called to theatre.

For reference, a closed reduction is when the patient is put to sleep and the hip injected with dye and x-rayed and then manually manipulated into place, and x-rayed to check the placement.  It is done under General so all the muscles are completely relaxed. Once the joint is in place the patient in put in a spica cast, a plaster cast from waist to ankle of the affected leg(s), knee on the other, for 12 weeks.  Sometimes a tendon in the groin is released (cut) to release the tension on the hip to stop it being pulled out of place.

I walked him to the theatre, no bed for him, just the comfort of mum’s arms. He was very interested in everything going on.  I sat in a chair, answered the questions as they made sure they had the correct patient. I held him as they put him to sleep, not a pleasant experience as he struggled against the mask and then went floppy. I had to hold my head back because the smell of the anaesthetic gave me some unpleasant flashes of the times I had smelt the same smell.

Mr Gin and I went and had some down time in the hospital restaurant. We went back and waited for the return of our small boy. The surgeon, Ms Bijlsma came to us in her scrubs and a serious look on her face. She was not happy with the procedure. Squeaky’s hip that felt stable was in fact very unstable and she was not convinced that the hip was in place. It looked good on the x-ray but she wasn’t that happy. She said she will order a CT scan to take slices of the hip from other angles to see if it is in place. If not then we would have to look at more invasive options. Not great news and we crossed our fingers it worked.

I went to get Squeaky from recovery; he was being nursed by a nurse whilst he screamed. I held him and tried to settle him, the poor possum was in a strange place, in a cast and hungry.  We got back to the ward, he was still screaming, I pretty much squashed the suggestion of offering him water. He was hungry and needed comfort. So juggled him around and fed him, the cast made him heavy and awkward. The feed settled him and he went to sleep on me, we changed parents as beds and then got him to sleep in the cot.

I took him to the CT scan in the stroller/buggy and he was starting to be his normal self. Mr Gin had gone to get some fresh air and lunch. Squeaky was chilled in the CT scanner and we returned to the ward to wait.

Ms Bijlsma arrived and the look on her face said it all. It had failed, the back of Squeaky’s hip socket is flatish making it difficult to stay in place. Poor Squeaky, going through all this for it not to work.

The next step is an open reduction, more invasive using surgery to ‘fiddle’ with the joint and tendons and fat to get it to stay in place.  Then into a Spica cast, again.  This cannot be done till he is one. I can remember my final open reduction, I was six. My heart breaks for Squeaky.

We took him off to have the cast removed, another situation that bought back a lot of memories. I am so glad we had not taken the Ear defenders off the buggy.

Finally, we took out little boy with his stitches from his tendon release, home. He was super cuddly and clingy the following day as we managed his pain and generally rallied together.

Before Squeaky’s operation I went and introduced Mr Hutt to Squeaky and we discussed my thigh pain which has not disappeared. I am having a CT scan this week to work out what our next step is and if I want to have surgery to fix the issue.  At this moment it is going on the back burner a bit because Squeaky is the priority.
For now, we are going to do a lot of swimming while he is cast free.

In other news, we are running a fund raiser for the hospital that treated Squeaky on the Isle of Skye, Info here: Fund raising for MacKinnon Hospitial