New Hospital...Bad News

We have moved house!! Exciting times! With the new house brings a new hospital! We had a choice of which hospital we wanted to go to, so naturally we chose the one of the best! Appointment was on time, which is rare but welcome! Maisie went for her X-Ray and we only waited a few minutes before being called to the Dr's room. Usual examination, the registrar got Maisie's new xray up on the screen. We saw straight away it wasn't good. It looks terrible from the one she had in May 2016 - only 8 months ago! The registrar went and spoke to the consultant after taking a photo of her last xray from my phone, they don't have Maisie's notes from RLH yet. They both came back in, the consultant examined Maisie and he has advised us that Maisie is to undergo an arthriogram & CT under General Anesthetic to determine what procedures need to be done to help her. The AVN is still very much present and she's also developed Functional Arthritis, meaning that he aches more towards the end if the day after being active. This could easily turn into Juvenile Arthritis if not helped. So we wait.....

Stephy xxxx

12th March 2014 - 6 month check up

The day has come around again where we had to take Maisie to The Royal London Hospital for xrays and a check up! Maisie had specifically asked if we could go via train. So we did. Maisie loved the train, wasn't so keen on the tube. It was a lovely sunny day. Being already stressed, the train was late, we got the wrong tube by accident. Tried phoning the clinic from the tube to no avail. I was getting more and more stressed. We ended up being around half hour late for out appointment. As we approached the reception desk in clinic 3, the regular receptionist stated to another staff member "see, I told you they'd be here" - she knows we travel from outer London. We were once again given a sheet to take Maisie down for her xrays. I took Maisie down to xray while Alan went for some sandwiches for us all. As normal Maisie was very well behaved during her xray, laying perfectly still whilst the big camera takes a photo of her hips in two different positions. We went back up to clinic 3 to wait to meet Alan and wait to be called. We saw one of Miss Maizen's registrars. He confirmed straight away that Maisie's hip is looking really good, he also did the usual physical exam. We told him that our local physiotherapists had provided Maisie with a 1cm instep just over a month ago to be inserted into all her footwear. He commented that her walking was good with the instep in and her range of movement was good too. They still want to see Maisie again in 6 months, he explained that anything can change while she grows so the checks need to stay at 6 monthly. The difference since August 2013 is amazing.

Steph xxxx

21st August 2013 - 6 month check-up

It was supposed to be 19th August, but apparently clinic days were changed. Of course the patient gets minimal notice of this change of appointment, no thought that we have plans, the kids have plans. We had to arrange someone to look after Hailie and Alan had to change a very important appointment at the last minute. We took the usual journey to The Royal London Hospital in Whitechapel, being an appointment at 10.20am means even though we are only a half hour drive from London, we still needed to allow for catching the back end of rush hour. We were pretty early, so went to the shop first, whilst we were standing outside, reducing the stress levels I said to Alan that in a way, it feels like our second home. This is saddening. We still had 10-15 minutes before Maisie's appointment, we decided to go up early, because she needed xrays first, logically thinking, if we get things sorted early, we have a chance of being seen quicker! When we got to clinic 3 and approached the desk, the receptionist recognized us and knew it was Maisie she needed to look for. This upset me a little inside, as it shows how many times we've been here. The lovely receptionist gave us the form for xray and sent us down for that. It looked quite busy in the waiting room, I think it was about 20 mins in total. Maisie as usual was good as gold having her xrays, doing as she's told and laying still on the bed. Once back up at clinic 3 Maisie went off to play with the toys they provide, I had to stand as there wasn't a seat, Alan had gone for more stress relief! I was standing for around 10 mins then a seat came available, we went to sit, literally sat for 30 seconds then the registrar called us. I have learnt that we only see the surgeon when things don't look very good, but still have some worry as they could call her in at any time. He sat us down asked how she is in daily life, pain etc. The registrar was silent while he loaded up Maisie's xrays and checked them over. He turned and told us that there is improvement on the femur! Yayy happy dance! We have bone growth, the left femur looks more like it should. He did say that the hip has a long way to go before they are happy with it and it can still dislocate at any time, we are not out of the woods completely, but we are getting there slowly and that is the main thing. After discussing the xrays, we asked about the instep that was requested last time - we still haven't received the appointment for this. He watched Maisie walking, went off and spoke with the physio and brought her into the room to discuss this with us. They measured her leg length and although there is still a slight discrepancy they both recommended that an instep being fitted now could cause more problems, plus so far she's done ok without it. We go back in 6 months for another check-up. For now, check out the xray!! The single hip is the left. The double is Maisie's left hip from February 2013 on the left and the new xray on the right. You don't need a degree to see the improvement!!

Steph xxxx

Another check-up

Today we had another check up at RLH. I had already told Maisie about this visit on Friday. Because she is now 3 and is capable of understanding things, I thought it would be best to tell her. We discussed that they were going to take pictures of the tops of her legs and have a feel to check they are getting better. Maisie seemed to understand. She asked questions over the weekend - which is what I wanted her to do! All was fine Sunday day time. Our eldest daughter Hailie was staying with Nanna to make things easier in the morning and so she didn't have to get up earlier with us.

The alarm was set for 6.30am. We had to get to London for 9.40am. Whilst getting ready, Maisie claimed her ear was hurting, she honestly convinced me & Alan her ear was sore, so we gave her some calpol. Most of the way there she claimed she felt sick and thought she was going to be sick, to the point she was gagging.

From arriving, we were, as always sent to the xray department. This time was slightly different from the last. This time she was able to keep her knickers on, before she was in nappy's so they had to be removed. I also was taken behind the screen. This alone makes Maisie so brave, laying there nice & still while they take each of the two xrays needed.

Waiting to be seen back in outpatients wasn't too long a wait, which was good. While in the waiting room I noticed a sign with Mr Paterson's name on, it said that in December 2012 he retired. Maisie is now back under the care of her original surgeon Ms Maizen.

Upon being called through, we firstly looked at Maisie's xrays, which are the best we've seen them! Although there is still a lot of growth needed, her femur head is now shaping to look somewhat like her good right hip. There is a noticeable hip socket height difference, that's just something she will have to live with. We explained our concerns over her recent rapid increase of pain, her refusing to walk short distances, and told how she now goes to nursery and dancing, generally more active. Maisie being more active coupled with growing and the below freezing temperatures are the probable causes for any pain and/or discomfort that she has felt. We then watched Maisie walk, first with her shoes on, then without shoes, socks or trousers. All other necessary checks were made on the bed and we're all fine. While Maisie was on the bed, I explained that while I was examining Maisie at home I noticed what felt like extra bone along side her hip socket, only a slight feel was needed before she explained, it is where they had to cut to do her open reduction, which was performed twice. The bone should have stuck itself back together, but Maisie's hasn't so has been left with a dip. As she grows and gets more weight around her hips it will become less noticeable and is just a deformity that she will have to live with. Maisie's leg lengths were measured too, there is still a discrepancy somewhere between 1/2 - 1cm for this to aid Maisie and relieve some of the pressure on Maisie's hip, we have been referred to Mile End Hospital, Whitechapel to have Maisie fitted with shoe inserts. We will go back to RLH in 6 months, more xrays and to see how the instep is going.

Steph xxxx

'Hope' Has Arrived.....

....The day after Maisie's 3rd Birthday, 28-11-2012, a parcel came with the postman. I had no clue what it was and Maisie assumed it was another Birthday present for her! So we sat together and opened it to see what was inside. It was our copy of Hope the Hip Hippo!...

....Hope the Hip Hippo is a story book for a child to read with their parents about the journey of having DDH, things that will happen and shows you with the help of Hope how things may change for a short while. It has fantastic explanation from the child's point of view!....

....Maisie loves her new book, she knows it is a book that MUST be kept safe and well looked after, because it's important. We have to thank Gina and Julie on writing this book for ours and anyone else's children who are affected by DDH. It adds an additional speciality that the book has a dedication section and little Maisie Moo or Maisie-Bug (as Gina calls her)'s name is amongst them! =)....

....This book is available to buy direct from the publisher or from Amazon. There is a Hope the Hip Hippo picture, clicking this link will take you direct to where to buy from Amazon. Money goes to the International Hip Dysplasia Institute to assist with research to try and find a better way of treating DDH than the way they have been doing for years and years...

Steph xxxx

Just beautiful....

....This beautiful piece was posted on the Hip Dysplacia facebook page by one of our mum's, it's lovely join us here: http://www.facebook.com/groups/Hiptoddlers/?fref=ts ....

FOR YOU PARENTS!!
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualise God hovering over earth selecting his inst

ruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realise it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Steph xxxx

Physiotherapy, Hydrotherapy & another check up

....So much has happened since I last posted. Following on from Maisie's last check up, we started Physiotherapy, this consisted of some exercises for us to do on Maisie every day to strengthen her muscles and improve blood flow. Simple exercises were quite hard to do with Maisie as she refused to allow her leg in the positions needed to do the physio! Unfortunately I cannot upload the physio sheets we were given, but if you would like a copy of them please leave your email address in the comments & I will email them over! We were also advised by the physio to buy Maisie a space hopper/exercise ball to assist with the stretching of her legs, this too was no good as she would not open her legs or allow you to open her legs. Even though the physiotherapist could do it to her!....

....Our physio referred Maisie to hydrotherapy, Maisie absolutely loved this, 6 half an hour sessions, this was brilliant and Maisie loved going every week. It did take a little longer than 6 weeks because the heating system for the pool was broken for two weeks. The staff in the hydro team were impressed with how well Maisie did from her first session where she would hardly move at all, to practically swimming on her own and doing most of what was asked of her. All this was great for Maisie, even if she did pull the emergency cord while I was getting her dressed at one of the sessions....

....We saw the physiotherapist after all of Maisie's hydro sessions were finished, Maisie's angle improved 10 degrees, which is great and matches the good leg. Although we were told this anticipation was still in my mind over what the xrays would show on 25th September....

....Maisie's appointment at Royal London, upon arrival Maisie was sent for two xrays, one with her legs straight and the other with her legs almost in the Spica position but ankles together, as always Maisie was great having her xrays done. Once they were done it was back up to clinic to wait to be called by the registrar - they were on a very nice 50 minute delay! Eventually we were seen, however nothing has changed compared to her last xray before the physio and hydro. It is fantastic that nothing has changed by means of getting worse, but the problem is that nothing has got better either! The registrar advised us to stretch Maisie's legs at least twice a day in sets of two for 10 seconds minimum each time, regardless of how much she resists - easier said than done when your not trained to do so! Also we are now going onto consultant lead appointments, which will mean that we will only see Maisie's consultant and not the registrar - which is great for me, I prefer it that way! There is a little muscle what I would describe as being behind the groin, this little muscle needs to be stretched, if left alone or does not get stretched then over time it will push Maisie's femur head out of the hip socket. Lots of exercise or as much as Maisie can handle. We go back in February 2013 for more xrays and a check up to see how things are going, the AVN cannot be left to develop any more. For now Maisie is enjoying life and we are trying to be as "normal" a family as possible, taking away every time she falls we panic and check her over and over, every time she cries for what seems no reason is questioned, our panic over her running or walking too fast, we do pretty well at being a normal family....

Steph xxxx

A Check up 8th April 2012

....As always it's a stressful day, making sure we have everything to take with us. The trip itself into London is only a half hour drive, but still, it's a pain! This time was made worse because RLH now has a whole new hospital, located next to the old building, but for a first time, not knowing how to get into it etc made things worse...

....When we arrived at the hospital, spoke to an ambulance near by to ask how to get into the building, we found a very nice clean building, but without the knowledge of which lift to go for as each lift takes you to different parts of the hospital, after about 20 minutes of not knowing how to use the lift and Alan going and asking different members of staff we eventually found we needed, lift core 9 - that would take us to outpatients on the 7th floor. Knowing what lift we needed was great, it was then operating the lift, if you step inside the only buttons are emergency buttons and open/close door buttons, we stood looking and not knowing how to operate the lift. Luckily a staff member came and asked where we wanted to be, she must have seen the confusion a mile off! Anyway, there is a little box outside of the lift with numbers on, you press what number floor you want then wait until it tells you which of the two lifts we should get into. Very confusing, but now we know...

...The reception staff we great and fully understood why we were a little late. Plus the fact clinic was running late by an hour and a half! We were given the xray form as usual and sent on our way to hunt out where children's xray was, luckily it was only on the next floor or so. We were down there for around half an hour, Maisie cooperated really well and allowed them to xray her hips without a fuss. We easily found our way back to the clinic waiting room and literally just waited, a member of staff told us that there was 5 people to be called before us, so Alan nipped out to make a call, then when he got back I nipped out to go and get us all something to eat...

...Time passed quite quickly until we were called, just as Alan was getting a cuppa from the machine. We followed the registrar to his room, spoke a little about how Maisie has been since she was last seen by them in January. We explained that we had her xrayed in February because she was constantly complaining her left side was sore and the result of that was that her hip is laterally subluxed, but that Mr Paterson was aware of it and he was fine to leave it and wait until this appointment. The registrar watched Maisie walk up and down his office, then she was put on the bed with her trousers off while he examined her legs. After a few minutes he said that he was going to get someone else to come and have a look, while he was gone Alan noticed that he had left his computer screen open with two of Maisie's xrays visible, December and January's xrays, so me being me, took a quick picture on my phone;

 

...This xray really shows how different her hips actually are. The registrar returned with Ms Maizen, Maisie's original surgeon. She watched Maisie walking and examined her on the bed. After some careful examinations and trying to force Maisie's leg to tilt to the side while in the abducted position, she said that she wants Maisie to have some physiotherapy to try and ease off this restricted movement of her left hip. Also because of the restricted movement in her hip her AVN has become worse and rather than her ball being mostly bone, what's there of her ball is mostly cartilage, which if it was left would cause the ball to become deformed which is something we don't want to happen. We are scheduled to go back to RLH at the end of September for more xrays. Fingers crossed the physio works...

Steph xxxx

5 weeks - post Spica removal check-up

....I'm struggling to realise that it has been 5 weeks since Maisie had her Spica removed!....

....Maisie has been continuing to grow & learn, her walking has become fantastic, her left foot is now flat to the floor the majority of the time. Running is a bit of an obstacle. But, over the last 5 weeks, day by day Maisie has been maturing into an intelligent two year old, with regular tantrums! ....

....Tuesday 10th January, Maisie had a 5 week check-up! Maisie was so good while she had her x-ray, we sang twinkle twinkle little star together. When we arrived back to the clinic, Maisie found herself a friend, in the form of a teenage girl who was sitting in the waiting room. Maisie had her new "friend" reading stories to her, with a new book every few minutes. Clinic was running about 45 minutes late, but we were seen at around 10.45am. This time we saw the surgeons registrar, who said that Maisie's hip remains in a good position, AVN has not got any worse. I asked if Maisie was allowed to start dancing, the registrar told us that, she would probably not be able to perform at the Royal Ballet, but some basic dancing if Maisie enjoys doing it would not hurt her. So hopefully sometime in the next few months, we will allow her to go dancing. Our next appointment at RLH will be in May 2012, where we will be in the new hospital that they have built, 7th floor, I am slightly dreading the gravity buzz that we might feel, but I cannot wait to see inside the new hospital, the pictures on the Internet & Twitter are amazing....

Steph xxxx

A crazy final 6 weeks, plus a cast removal....

....This past 6 weeks has seemed like it was forever. Although the days, nights & weeks have flown by, looking back it seems like such a long time ago that Maisie had her cast changed! There was problems getting her appointment for her "cast removal" which was then changed to a "cast change" we ended up with two appointments - 6th December in clinic & 8th December on the day unit! We only found out on the 5th December which appointment we had to go to, which was the 6th in clinic!...

....Due to our surgeon leaving there was a lot of problems in sorting Maisie an appointment for anything to happen, resulting in lots of phone calls between us and RLH....

....We were a little early for the clinic appointment, but even though they wern't open, they still let us wait inside because it was freezing, plus we were only 5 minutes before they opened! We saw Maisie's new surgeon - Mr Paterson - he told us that he wanted an x-ray done of Maisie's hip before he could confirm it was being taken off, he wanted to be sure the hip looked good enough to have the cast removed. We were back from x-ray within 30 minutes and only waited a few more minutes before the surgeon came out and said "casts coming off". We had to wait a little while for the plaster technician to come. At first Maisie started crying while he was sawing her cast off, but that soon turned to laughter and her thinking it was tickling her! Once off, Maisie's legs were not in too bad a condition, obviously there was a lot of dry skin, but none of the black hairs like there was last time. We cleaned her up a little & put her nappy on properly and went back to the waiting room to wait to be called by Mr Paterson. We only waited around 5 minutes, at this point Maisie only had her vest on because we didn't see the point in putting her clothes on to have to undress her for the surgeon to check her over. Mr Paterson said that her hip is looking really good, is in a good position, he did some movement checks on her leg and said that the movement is as good as can be expected. There has been some restricted blood flow to her hip bones, but he is not concerned about this and said that it should sort itself out over time, we asked how long it would take, which he said would be months rather than weeks, but he is not concerned about it and will just keep an eye on it at check ups. Also this time Maisie doesn't have to wear the hip abduction splint or any other type of splint/brace, he thinks her hip will do fine without the use of one. We go back in 5 weeks for a repeat x-ray to check that eveything is still doing ok and growing as it should be, he also said that where her hip was subluxed before her 2nd operation there is still some wear on her ball, but that over time it should go back to how its supposed to be!....

....48 hours post cast removal and Maisie started walking with the aid of her dolls pushchair and push along walker, she is growing stronger and stronger as the days are passing, we are all so glad that Maisie is out of her cast in time for Christmas! Now we just have to hope that her hip stays in place and that will be the end of her operations, here's hoping 2012 will be a better year for us all, it has been such a whirlwind year....

Steph xxxx

Cast Change....27th October 2011

....Getting up at 4am is a little too early, but we have to be dressed for 5am for the Ambulance Transport to arrive to take us to The Royal London Hospital for Maisie's cast change. We woke Maisie at 5.45am so that she could have a drink of juice before her 6am cut off...

...The ambulance arrived at 6am. We arrived at the hospital at 7am, I was really surprise how busy the roads were into London that early in a morning. Arriving at 7am meant that we were half an hour early, as the ward didn't open until 7.30am. Once the ward was open we were shown to Maisie's bed where she loved playing with the buttons on the side & moving the bed up & down! The registrar came to see us & told us that she would be replacing Maisie's cast and x-raying her to check the position of the hip. Also if the hip seemed unstable she would try and do a closed reduction, but if she couldn't get it in or it seemed very unstable that she would just re-cast her and have our consultant ring us with an appointment to discuss further treatment as she would not open Maisie up without talking to him first. The registrar also informed us that Maisie was 3rd on the list. Next to see us was the anesthetist, talked through the same old stuff about how she will go to sleep, what they will do once Maisie is asleep etc. We have heard it that many times! Then the nurse came around to get her part of the paperwork out of the way...

...Maisie was eventually called to theatre at 11.45am, she was hungry, thirsty and very grumpy by this time. It doesn't take very long for Maisie to fall asleep with the gas now, yes she screams, but that is better because she takes deeper breaths in, with the mask over her face she gets more of the gas & goes to sleep after only 2 or 3 big deep breaths. Once that was over with, me & Alan went for something to eat, even though we didn't enjoy it. Just as we got back on the ward at 12.50pm, theatre rang to say Maisie was ready to be collected. We were back on the ward for around 1pm, Maisie was lying on Alan's chest on the bed & I was sat in the plastic chair, we all fell asleep until 2pm. At this time the registrar came to see us & told us that Maisie's hips looked very stable, though very stiff, which is to be expected, her wound has healed nicely. We had noticed some rough parts on Maisie's cast that were touching her skin, the registrar rang the cast technician to ask him to come and check over Maisie's cast. Maisie will next be seen in clinic in 6 weeks time to have the cast removed and x-rays taken, if the hip has dislocated in this time we will discuss further treatment, same for if it dislocates again after the cast has come off, we will discuss where to go next. When he came he cut some of Maisie's cast at the front and put some fleecy type stuff over the top of all the rough edges....

...That was it, we had seen everyone we needed to see, all that's left is for Maisie to eat something and keep it down so we can be discharged home. Maisie ate a slice of toast, half a sandwich & 3 bourbon's, we were definitely allowed to go home...

....It was 4 days ago that Maisie was put to sleep for the 5th time this year & you wouldn't think there was anything wrong with her to watch her play, find new ways to play. It's wonderful to be able to watch her grow and cope with her Hip Spica...

Steph xxxx

Almost that time again...

....It has been just over 5 weeks since Maisie's 2nd Open Reduction. Here we are again, Maisie is going back into hospital on 27th October (next week!!!!) to have her cast changed & a possible Femoral Osteotomy. We wont know if she's to have this other surgery until she's under and her cast is off, if her hip is still unstable then they will probably do it. We have only just got the appointment for Maisie's cast change, at first she was supposed to be getting admitted to the ward, we waited & waited but nothing, so I rang, still nothing. I rang again this Monday and by Tuesday we had an admission, but were not going onto the ward, were going to the day unit instead, I don't know why....

....Maisie has been so different this time around compared to her 1st Open Reduction, she has been moving around since we got home, getting stronger & stronger every day. Nothing is stopping her this time. She can climb on and off the sofa, which at the same time as being as sweet as it is, its sets your heart going. Also she has learnt how to walk, aided by anything that she can push along the floor....

Maisie has taken to perching herself on her potty to play with her bigger toys...



          Here she is with her big sister Hailie, Maisie is managing to balance herself, but folding her half casted leg under her...

Steph xxxx

The next 4 days in hospital....

....16th September - Maisie's background morphine was taken off this morning, she was left attached to it just in case a push of the button was needed. Maisie was still very groggy today, as to be expected, but seemed to be doing fine. Maisie's line to the morphine was eventually taken out around tea time, she seems to be doing fine without it & me and Alan are both glad they've stopped it, some form of our happy little girl had came back and she was asking to be put on the floor, it was hard to say no to her. Not wanting to put her on the floor with her only being just over 24 hours post-op. Eventually we gave in and put her on the floor, she lifted her top half, then started to cry. We knew it was too soon, but because she kept asking, we thought maybe she would realise it was "too soon". This time round Maisie is refusing to take her painkillers orally, so the nurses are giving her suppositories....

....17th September - Maisie had a pretty good day today, her temperature went up to 39oC, but after some paracetamol & fan brought it down nicely. Because Maisie's temperature was so high they had the little red light attached to her toe, which monitored her blood oxygen levels and her heartbeat. Maisie was sitting with me having a cuddle when all of a sudden this machine she was attached to started beeping, a student nurse came over to have a look, she watched it for a short while, as did me and Alan, the top number (which was her blood oxygen levels) was dropped to 81, after I asked what it should be, she told us above 95. The student nurse went to get a qualified nurse, but they were busy, so she came back to us and this top number dropped to 39 for only a second then went back to being 81 again. I think the student panicked a little and she got the oxygen mask and placed it on my shoulder close to Maisie's face. The oxygen had only been on a matter of 20 seconds before the qualified nurse came over, looked at Maisie, swapped toes with the red light thingy and everything went back to normal. The readings stayed normal for the rest of the time they were monitoring her....

....18th September - We had Maisie out for a lot of day today, she did not want to be on the ward at all and was screaming every time we sat down with her, she wanted to be in our arms walking around the ward, which is OK for a short while, but she soon gets very heavy which leads to back ache and aching arms. We have been told that provided Maisie maintains a good temperature she should be able to go home tomorrow, but that if her temperature did spike again then they would have to take some blood and wait for the cultures to come back. Maisie enjoyed being out and about all day and by bedtime after her last temperature was taken for the day it had managed to stay good all day....

....19th September - By 10am we were told that we were allowed home! Obviously we had to wait for Maisie's medication to be brought down from pharmacy and then we would be free to go home. We took Maisie out for a long walk. Close to lunch time we took her back to The Sick Children's Trust so we could cook her a small frozen pizza we had for her. After she had eaten Alan took Maisie back to the ward to see if her medication was there yet, while I stayed back and packed up all our stuff. Alan had only been gone around a half hour when he rang me to say that he was on his way back, Maisie has been officially discharged and is allowed to go home. We were prescribed paracetamol and diclofenac suppositories this time, and also some lactulose. As soon as we got into our taxi and were on our way home, Maisie face lit up...she was even happier when we stepped through our own front door. Once we had settled in a little at home, I sat and read Maisie's discharge paper, it read:

Clinical Details:

Main Condition Treated:

left developmental dysplasia left hip previous open reduction left hip, subluxation left hip.

Most Invasive Procedure:

Revision open reduction left hip, tissue samples sent for MC+S + hip Spica.

Clinical Summary:

Elective admission for the above procedures under Ms Maizen and Mr Patterson on 15/9/11. No complications. Femoral head appeared reduced in the acetabulum but is mishaped. Appearance due to ?previous infection or ?AVN. MC+S of hip tissues showed no growth after 48 hours. Discharged home with analgesia. To be admitted for change of hip Spica in 6 weeks....

Steph xxxx

Surgery today...15th September

....Maisie was up by 5.30am, which was ok as it ment that she could have a drink of juice before the 6am cut off time. We let Maisie just run around the ward once all the lights had been turned on, just trying to keep her entertained and her mind off food and juice. At 9.20am we got the call to say theatre were ready for her, which was great timing as Maisie had just started asking for her juice. By 9.40am Maisie was asleep and laid on the bed, the anethatist had to hold her jaw up because it was making her make this odd flapping-type noise and we were led out of the room. We already knew that Maisie's operation would take a little longer than her first open reduction, so we went to sainsbury's cafe for a cuppa tea and bacon sarnie, can't really say either of us enjoyed them...

...At 1pm the call came to say Maisie was in recovery and is ready to be collected. Maisie had been in surgery for 2 1/2 hours. This time Maisie was on a morphine drip, with a background dose of 1ml per hour and a button to press for more if needed...once again we have a casted little girl...

Ms Maizen came around to see us around 4.30pm, she was informed that Maisie had to be given the sickness drug via her canula, because she had been sick twice since getting back onto the ward. The surgeon explained that she had taken all the samples she wanted, and that there was some dead tissue sitting in her socket, which has been removed and some has been sent off to be tested. They had do twist her leg inwards to get a good position of the femur in the socket, she also told us that it wasn't fully dislocated, but that it was subluxed. If her results come back normal at her 6 week cast change and the hip has instability, then the femoral osteotomy will be performed there and then...

...Maisie only managed a little bit of her tea and was really groggy and sleepy from being put to sleep and the morphine...

....The anethatist came round to see us, and because Maisie was sick twice and seems to be doing ok, they agreed to reduce Maisie's background morphine to 0.5ml per hour...

Steph xxxx

Admission Day....14th September

...Today is the day that Maisie is going to be admitted once again to Grosvenor B children's ward at the Royal London Hospital, in preparation for her second open reduction. I eagerly awaited for 9am to come so i could ring the admissions office to make sure there was a bed for Maisie. Once it was 9am, i rang the admissions office and the woman who answered said that she would have to speak to the bed manager and get back to me. So i waited an hour then rang her back, with needing to know so we can travel to London, there was still no news, but said she would ring as soon as she heard back. She rang back about 50 minutes later and confirmed there was a bed for Maisie and confirmed we could be on the ward for 3pm...

....Once again we are staying at The Sick Children's Trust - Stevenson House, after dropping our bags off, nipped to the shop, then got Maisie to the ward on time. After going through all the paperwork with the nurse, Maisie's surgeon came to see us and explained that Maisie should be taken to theatre between 10-10.30am, she did say that they will know a lot more once they have her opened up and are inside, while they are in they will be taking tissue and bone samples to be sent off to the microbiologist, which provided they come back OK, then it will be possible if needed to for Maisie to have a Femoral Osteotomy at her 6 week cast change. It was explained that if there was a slight infection, then putting the hardware in could make it worse, so we have to wait and see. Also she would be cleaning her hip bones. Maisie had settled herself into the ward pretty much straight away and was really enjoying running around the ward...

Ms Maizen - the surgeon left a lovely drawing on Maisie's left leg...

...Miss Ballooniverse came onto the ward and Made this balloon flower bracelet.

Maisie looking like she's enjoying the hospital food, this was the only time she ate the hospital food

Steph xxxx

MRI results...13th September 2011

...The eagerly awaited and a little late phone call from Maisie's surgeon came today. Maisie's MRI results show that the hip has dislocated, but she was reluctant to do two surgeries in one in case there is some infection, as putting hardware inside her body could make an infection worse. She would send off samples of the tissue and bone of her hip to the microbiologists to be tested, but we would not receive these until the 6 week cast change. Also there is some oedema around her bone, but not in her hip socket. So off we go back to the Royal London Hospital for Maisie's second operation....

Steph xxxx

Maisie's MRI scan 6th September 2011

....Monday 5th September 2011, we set off for the journey to Whitechapel, London where we were going to be staying at The Sick Children's Trust - Stevenson House the night before Maisie's MRI as she had to be at the hospital for 7.30am. It's so nice to have a wonderful charity like this so close to the hospital, it has made life so much easier being able to stay just minutes from the Royal London Hospital. As it was last time we stayed there, it was a very warm welcome. Once we were given the keys to our room, it had turned out that we were staying in the room we stayed at the first time we stayed with them for Maisie's operation. We bought some merchandise that you can see in this picture....

....We bought 2 "Pencils with a point", 2 "Pens with a point", "a cuppa that cares" mug, and their tea towel. We headed up to our room with our bags, to sort things out and unpack the stuff from under the pushchair so we could go and get some stuff from the shop. Maisie was surprisingly good, to say she's never slept their before, she was settled in the travel cot provided by 8.30pm-ish. Which gave me and Alan some time to just sit and have a cuppa before bed. All alarms set, my mum will be ringing 6.45am to check were awake...

....Tuesday 6th September 2011, Maisie had a pretty good night, she woke at 12.30am so she had her bottle of milk, I was quite glad she woke for it before the 2am cut off. Maisie didn't cry again until 6.15am, which I put her in the bed with me and just laid next to her, Maisie of course as usual went back off to sleep, while I stayed awake, which I had been on and off all night & so had Alan. My mum rang as planned at 6.45am and we then got up and got washed and dressed while Maisie slept. Maisie woke at 7.10am, which was good, we left her nightie on, changed her nappy, put her coat on & went downstairs. We got to the hospital just before 7.30am, the nurse put Maisie's name bands on and before 8.15am the anaesthetist was round talking to us explaining everything, and that they may put a cannula in because the sonographer may want to inject some stuff at the end of the MRI to give them different views. We agreed to this, we really don't mind adding "maybe" something else, if it will give them more of a picture of Maisie's hip. Maisie played with the toys on the ward for a while, there was a ride-on fire engine, which she took a shine to, but she soon figured out that she could push it up the hallway to the other half of the ward!! After a while of playing, colouring on paper and drawing on her hands and face with felt tip pen, Maisie started to become restless and asking for her juice, which sounds like "Joos" when Maisie says it. It was hard to hear her asking for a drink and telling her "not yet" then listening to her cry. Maisie was eventually called down at 10.15am, unfortunately this time only one of us could be there while Maisie was put under because the room was much smaller than others. I went down with Maisie, and after a little struggle with screaming, Maisie was wedged in a position that allowed the mask to cover her face and after 2 large breaths from Maisie she started to go off. Once she was under, on the count of three, myself the anaesthetist and the nurse lifted Maisie onto the bed and laid her down, they kept hold of her dummy & dumbo for when she came round, I gave her a huge kiss on the side of her head from me and daddy and went back to the ward with the nurse. Me and Alan went to a cafe for some breakfast and a cuppa, the nurse asked if we could be back in around 40 mins, which was fine. The call for Maisie was around 11.30am, Alan went with the nurse to collect her. It only took 15 minutes to collect her, but it felt like it took hours for them to come back with her. Maisie was groggy as to be expected and drank half her cup of juice in one go & then wouldn't let go of it. The nurse said as long as Maisie kept the juice down then they would make her some toast. Maisie had a cannula in, so this was removed and after the bleeding had stopped the nurse put a plaster on it. Around 45 minutes later Maisie was given 2 slices of toast, which she sat in the cot watching cbeebies eating away. The nurse came to see us at 12.30pm to explain that we would be getting the results in a few days, what to do if we have any concerns, who to ring etc. I signed Maisie's discharge papers and we were allowed to go. We took Maisie back to Stevenson House, we had a cuppa and Maisie sat and ate a yogurt. Maisie was happily playing Alan stayed downstairs while I went and packed our things up, brought them downstairs and handed the keys back. Alan phoned for our taxi and waited for him to turn up. We got in the taxi at 3.30pm and were back home for around 4.15pm. Maisie was in bed and asleep by around 8.30pm and slept brilliantly....

....We bought The Sick Children's Trust T-shirt, and it is a little big for Maisie, but here is a lovely photo of her wearing it today (7th September 2011)....

Steph xxxx

Devestating news....

.....The last few weeks have been joyful and tearful, 8 weeks post Spica Maisie finally started walking again! We were so delighted that she was finally walking again and could start to "enjoy" being hands free to carry whatever around with the struggles. Maisie is more pleased with herself each day she does more and more. However for a few weeks now there has been a concern on the pain that Maisie seems to be in while she's in her splint. I cannot get her leg to sit in her splint at all, it sits very far away from the hard part at the back. It has also started to become uncomfortable during the night. The other night I ended up taking it off because she seemed in pain with it on, and i must have been right, because as soon as i had taken it off she curled up into a little ball and went off to sleep and stayed asleep. After this i decided i was going to ring her surgeon and explain what its come to....

....The phone call was made this morning while she was at our local outpatients clinic. I explained to the secretary what my concerns were and asked that she would speak to the surgeon to get her view, while i was still on the phone, the secretary rang down to her room and before i knew it Maisie's surgeon was on the phone to me, I explained about the pains and her discomfort & explained to her how Maisie tells us she's hurting around her scar area. The surgeon told us to leave the splint, we cannot force her into it and if it's hurting her then there is no point to use it. She also explained that she had showed Maisie's x-ray form her last appointment to her other colleagues who had said that Maisie's hip has re-dislocated. The MRI is still required to find out exactly what is going on, but a surgery date has already been arranged for 15th September for a second surgery for Maisie. I asked her what kind of surgery we would be looking at, and she replied by saying, another open reduction with a possibility of an Osteotomy being done at the same time, but that they would know better once they had the results from the MRI. Maisie's surgeon wont be there on Tuesday 6th September, but once she has Maisie's results and has spoken to her other colleagues and they have a clear picture she will let us know what is to be done.....

Steph xxxx

...MRI phone call...

.....The eagerly awaited phone call from The Royal London Hospital arrived around 1.30pm. It was confirmed that Maisie needed an MRI scan, and as Maisie needs to be put to sleep for it to be carried out, this could be done on 6th September 2011, We will need to be on the day stay unit for 7.30am & she is not allowed any food from midnight. Unfortunately its landed on the same day that Hailie starts back at school after the summer holidays! I did want to say it wasn't suitable because of Hailie, but at the same time I was too scared to refuse it & not know how long it would take to get another appointment, so I accepted it....

....We are hoping that they can tell us straight away what the MRI shows and means for Maisie's future...

Steph xxxx 

We've had a set back...26-07-2011

....Over the past week or so, Maisie has started to change. When she is walking with her push along walker her left leg seems to have turned out and her leg is further apart from the right leg than what it was the other week. Maisie has since started jumping followed by screaming while trying to fit her splint on a night time & is now also rubbing her back again like what she did before her open reduction in March...

...So, this morning we rang the surgeon's secretary and explained some of our concerns about Maisie. The secretary put me on hold & rang down to the surgeon, who told her to tell us to come to clinic and she will check Maisie over....

....When we got to the hospital we were seen really quickly, the surgeon listened as I explained the concerns we had with Maisie. The surgeon then watched Maisie walk holding my hands and was impressed. She then asked for Maisie's trousers to come off so she could examine her hip. She pulled, bent and stretched Maisie's left leg and said that for the length of time it has been since the operation and cast removal her hip is feeling good, however she was concerned about the things we had reported and asked us to take Maisie for an x-ray in two positions, 1 with the legs as straight as possible and the other with her legs abducted (knee's bent and open legs). Once the x-rays had been done we went back to the surgeons waiting area to be called back in. When we went in, she was busy checking Maisie's x-ray's. She said that Maisie's hip has not dislocated again and the socket has deepened even more, with an Acetabular Index of 27 now =) however, she could not interpret the x-ray and see what was going on, she also told us that she was really concerned that Maisie has taken so many good steps forward, to have gone back was a worry....

 

....I found this x-ray image from google. I wanted it so I can try and explain a bit better what Maisie's new problem might be...You can see where the ball at the top of the femur bone sits nicely in the socket on the left side of the hip x-ray, you can also see that it follows in line with the pubic bone, joining onto the other side of the hip (which yes is slightly out of socket, but irrelevant). As Maisie has left hip dysplasia its her right side that is running in line with her pubic bone, her left however although still in socket does not follow suit and run in line with the pubic bone. Our surgeon is wondering if the ball is sitting too far back in the socket and if her pubic bone is broken....

....Maisie's surgeon has a meeting tomorrow (27-07-2011) with the radiologists at The Royal London, and she is going to discuss with them if it would be better to do an M.R.I scan or inject her with the dye and do an examination, she needs to discuss which would give them all a better picture of what is going on with Maisie's hip. Either way Maisie will need to be put to sleep to have done as she needs to stay still. Which should only be a day stay at The Royal London. But, the anethasists waiting lists are massive, but she is wanting and will try to get Maisie seen ASAP. We have been told to carry on as normal with Maisie & to allow her to carry on as normal....

Steph xxxx

http://www.chiropractic-books.com/Hip-Dysplasia-Ortolani-Galeazzi.html