Thursday 16th June.......Cast removal day....

.....Today is the day that our 12 week wait has finally come around. Maisie's cast is being removed today, among the emotions of happiness are feelings of nervousness, anxious & terrified of the outcome. The appointment was not until 2.55pm, which made it a pretty long wait, with little to be able to do at home, we found ourselves pottering around, waiting to be taken to hospital. When we arrived there was a 45 minute delay as the surgeons were held up in theatre, but that was fine. We sat in the waiting area for around 5 minutes & then were called through by the plaster technicians. Maisie was asleep & had been for around 1/2 an hour, but we had to wake her up so they could start the process. I woke Maisie by lifting her out of the pushchair - which she wasn't too impressed with at all. The technician then explained that because of the vibration, she will cry, could hold her breath, turn blue and vomit. He said "to be prepared" I replied with "what to cry myself!"...

....There was two cast technicians in the room with us, the male marked Maisie's cast for where it needed to be cut as the female had never cut off a Hip Spica before & was unsure on where to cut. The female cut along the lines that had been drawn on, Maisie screamed at first then she settled into a gentle whimper every so often. The whole time I was holding Maisie's hands up and out of the way, constantly kissing her head, reassuring her that she was a "Good Girl", which she did repeat after me. Once they had got all the front of the cast cut the back needed to be cut as well, for this I held Maisie, so she was upright against me, I could feel the vibration through her body onto mine, but she stayed clinging onto me whilst the cast was being cut off, then he went on to use some scissor type things to prize the cast open & then some round ended scissors to cut through the bandage under the cast. The male technician then took her off me from under her arms and asked if I would remove her cast...which I did cautiously, I didn't want to hurt Maisie by taking it off, but he just reassured me that as long as I pull it apart before taking it of her legs she would be fine. I have to say the smell that came out of the cast was horrendous. Once the cast was fully away from her body I put her a nappy on "normally"....

....From there we were given a sheet of paper & told to go to the x-ray department. When we found it there was a little wait, but nothing too bad as far as waiting times go at hospitals. While we were waiting I took some closer photo's of Maisie's legs....

 .....This is Maisie's left leg, her skin is so hard and tender...

....This is Maisie's right leg, as it was only half casted there is only some slight irritation to the top part of her thigh...

....Eventually they called us for the x-ray, Maisie's nappy has to be completely removed for this, then once she was laid in a good position, a thick black board was placed in a drawer like thing under the bed and an ovary protector was placed over the pubic bone area to protect her ovaries. A second x-ray was required with a more straight leg approach, as we fiddled with her legs to straighten them we could not get them ideal, but the x-ray was taken, all the while Maisie was crying as she quite obviously did not want her legs to be like this. The man came back from checking the x-ray and said "it's not a perfect x-ray, but I'm not willing to put her under anymore stress" which I replied with "well, if they want another, they can arrange one for a later date at our local hospital!" He agreed, handed me the piece of paper back and told me to go back to Brian Roper Unit and wait to be called by the surgeon...

....We had to wait a while for our surgeon to call us through, but there was a few other patients there seeing her as well. She called us through, and asked how Maisie was etc. She then examined her & looked at her x-ray. She said that everything was looking good! Then she explained that Maisie would now go in to a Hip Abduction Splint for 3 months for bedtime only. I asked how to fit it, so we took it out of the packaging & I was allowed to "try it out" so that I knew how to use it, which it is pretty simple to do, however the cast technician said that if we needed any help with it, we can ring them and they will talk us through it over the phone. After he had left I asked the surgeon, what her personal opinion of what Maisie's outcome would be, she said that it was too early to tell, but she did show me the comparison of x-rays from the very 1st to this last one, she explained about the Accetabular Index and how its measured, Maisie's first x-ray showed an A.I of 50.2% - compared to this new x-ray which showed her A.I is now 32.6% the surgeon is very pleased with this result after just 12 weeks in the Spica, ideally her A.I should be no more than around 27% for her age. I also asked about the ball at the top of the Femur, this is still extremely small compared to her right (good) leg, the surgeon explained that this ball can do a few things, it might stay small, it might grow to size as the right, and sometimes they grow bigger. Each direction has its own path! The surgeon wants to review Maisie again in 3 weeks time, which is to be arranged....

.....Maisie of course had a bath when we got home. I put lots of bubbles in it for her, got everything prepared then stripped her and carried her through to the bathroom. As I started to place her lying down in the bath she started to cry, I got her in the bath but still holing onto her in comfort, Hailie was there too and she started to get hand fulls of the bubbles and put them onto Maisie's head, cheeks, nose, chin - this was making Maisie laugh a little, and it distracted her long enough for me to clean her body, as I was washing her hair she started to shake, which I did not like at all, so quickly finished off her hair then got her out of the bath and gave her a cuddle to cam her down....

....Maisie is now very fragile, she does not like her left leg to be touched at all. She tries to move about but it hurts her and she cries and sometimes screams. I can only describe this part of the journey as like having a top half 18 month old baby with a newborn baby for the bottom half.....

Steph xxxx

Gone......Where is it.....There it is...

.....We have had a few dates for the removal of the cast, first it was 23rd June, but that would mean the cast being on an extra week, so the surgeon wanted it changed to the week before, as of last week we had not heard a thing, and the time is coming very close. I rang & spoke to the surgeon last week, and she said the 17th June to have it off & she would get a letter sent out. That letter came today, 16th June 2.55pm is the appointment to have the cast removed, a splint fitting & any other examinations/tests etc that need to be done...

....It has felt like a lifetime that Maisie has been a casted baby, putting up with the funny looks in the street and the constant questions from strangers are almost over. I don't mind the questions.."aww whats happened to her leg" or something along the same lines, my easy reply is "she's had an operation" which most people have just taken that answer and left it at that, where a few others have asked for more information, which I have briefly provided "she was born with hip dysplasia". During the "casted time" Maisie has learnt to crawl with her cast on and has some amazing muscle strength in her upper body, Maisie has also taught herself how to stand with the cast on, she has fell over backwards a couple of times, but she does mostly remain strong and well balanced....

...We have a new game, which is very funny & can only be done when Maisie can access the part of the cast that covers over her belly, usually during nappy changes; Maisie will get her dummy or something else (anything that will fit) and she pushes it down her cast, breathing her stomach in to accommodate it, from there she will put both her hands out to each side and say "Gone" - with a shocked look on her face, then I have to say "where is it?"....a huge smile comes upon Maisie's face as she retrieves her object of choice and replies with "there it is!!".....

Steph xxxx

"Good Girl, Good Girl...."

....We have just under 4 weeks until Maisie will be freed from the cast, but she is growing stronger & stronger as the days go by....

....We were using Jelonet gauze on Maisie's wound and after about 5 days we noticed a rash that had formed on her left side, it was all over the wound, up through the cast to her chest. As is was a Tuesday when we noticed this I rang the surgeon as she was at our local hospital in clinic, I spoke to her secretary and explained what was happening, so she kindly went and spoke to the surgeon who said to stop using the Jelonet and go back to dry gauze. Unfortunately Maisie had an allergic reaction to the Jelonet - the 1 thing that would help her wound and she has a reaction to it! Oh well, lets just hope, we thought! Later on that day as I was changing Maisie's nappy, it was almost tea time, I pulled the dry gauze from her wound and there was the discharge & a few spots of blood there, Alan was straight on the phone to the GP surgery and we got an appointment within half an hour. Once we saw the doctor he had a good look at her wound. He did say it was only superficial but that he would prescribe some antibiotic cream to apply 3 times a day & to leave it uncovered. This is working a treat, I apply it with a glove on (so I don't pass any other germs to her wound from my finger), I can feel each time I apply the cream that its getting better, which is great. On the other hand however Maisie does not like her wound being touched at all, she will say in such a sweet innocent voice almost crying "good girl, good girl" to which I reply "yes, you are a good girl"!!!....

.....A slight adjustment has had to be made to Maisie's Spica chair too, where her legs are casted wider she does not fit in the seat properly - she slides forward, so what Alan did was, get a belt, (the material ones you buy on some jeans) and cut the belt fasteners off & has securely screwed it in the middle  underside of the seat to make a loop coming up the front of the seat, so when we put her in the chair we just thread the harness into it and this secures her comfortably on the seat!....A week later we had a follow up appointment with the surgeon, she is really pleased with Maisie & how she is adapting to life in her new cast. We did have concerns about Maisie trying to stand while she's casted, the surgeon was not too worried about this but did advise us to keep an eye on her when she's trying to pull herself up just in case she hurts herself. Apart from that, once the cast is off Maisie will go into a splint for bedtime only, which will put her in the position she is now to help the hip carry on growing, and will be reviewed in July to check her progress!....

....Apart from being unable to walk Maisie is getting around really fast and rather than sniping around the house she now uses her hands to walk (and drag her cast) like we would use our legs to walk is how Maisie uses her hands, the muscle in her arms is unreal, she is so strong. Maisie is constantly throwing herself from her back to her front, then onto her back again, she really is trying her hardest to do what she wants to do, nothing can stop her. With the new cast shape has come lots and lots of sleepless nights, maybe she's uncomfortable or just wants to know your their, but we have found that maneuvering the pillows in her cot and lying her a little flatter than before she is settling most nights now....

Steph xxxx

Cast Change......5th May 2011

....This is the week that Maisie got her cast changed. The week started on a Bank Holiday Monday, and we had to take her to a&e because the smell from her wound area was so vile me and Alan were almost sick with it. Taking her to a&e resulted in her being admitted overnight to be monitored, with the smell getting so bad in such a short space of time. By Tuesday morning the smell had no changed at all, but Maisie's surgeon was in clinic that morning, so the nurses rang down to inform her that Maisie has been in all night and could she come up and see her. The surgeon came up around 1pm-ish, she said that she was OK for Maisie to go home and was happy for her to attend on Thursday as planned. The surgeon did say that she may need to do a surgical clean of the wound, but that would depend on what it was like once the cast was taken off and examined! If she needed a surgical clean then that would require an overnight stay, just to be observed.....

.....Thursday 5th May 2011.....

Cast Change day is here, I was up in good timing to make sure I'd packed everything needed and not missed anything,  had left myself jobs to do to keep me awake, once I had got ready, checked the bags, they were put by the front door ready to go. I didn't dare sit down in case I fell back to sleep. We left for London at 6am - which would give us enough time to get there - the journey wasn't too bad, and neither was the traffic. We arrived at the hospital for 7.20am, which wasn't too bad at all. Once we had booked in and filled in all necessary paperwork with the surgeons registrar and the anesthetist, Maisie was given a hospital gown to change into, ready for theatre. Maisie was on the first list to go down, but there was a 5 month old baby who would go down before her. Theatre called around 9.30am to say they were ready for Maisie, so we took her down to theatre with a nurse from the ward. Maisie wasn't half as bad to put to sleep as last time, she hardly wriggled or resisted, and was gone in no time. Once she was laid on the bed, we headed back to the ward, the nurse said to go for a cuppa, but to come back in around 20 mins...Sainsbury's awaits....with cheap food and cheap cuppa's, but still really nice for being cheap! Once we were back on the ward, it wasn't long before the nurse came over again to say that theatre had called and Maisie was ready to collect!!!  10.30am-ish we took the walk back to theatre to collect Maisie, when we were close we passed a nurse, who asked if we were going to collect a little girl, so yes was the answer, and the nurse said that she seems very happy. Once we walked into theatre, Maisie was there in one of the theatre staff's arms, all awake and alert, with a BRIGHT PINK cast!!!!

Once we were back on the ward, they let Maisie settle in for around half an hour, in that time she drank two cups of juice, so they offered her some toast. Maisie ate two slices of toast, had more juice and fell asleep. The surgeon came to see us and explained that, she pressed and squeezed on Maisie's wound and nothing came out of it, so there is no infection and there was no need to do a surgical clean, and that the smell was on the cast itself, urine was one of the main causes of the smell, (which can happen & is hard to prevent) the redness on the wound is Granulation Tissue, which can sometimes happen, but she cant treat it while in the Spica, but once its been removed she will treat it, even though it is only cosmetic. Maisie's hip socket hasn't grown yet, and although the ball was not fully inside the socket, it had still remained in position! We now have to use Jelonet & gauze on her wound to prevent further infection. Also the surgeon has changed Maisie's hip position, her legs are now wider apart, this is to try and force the socket to deepen on its own, if it doesn't deepen on its own then it would be another operation to scrape the socket deeper. Once the cast is off in 6 weeks time, Maisie will be going into a night-time splint only, but will be free of it throughout the daytime to learn everything again....

...We have now been home two days, Maisie's is drinking more juice than she was before, the nappy that's needed to insert into the cast is now a size 4, with a size 6 still for the outside to hold it all together. Alan is going to have to make some adjustments to her Spica Chair too, as she doesn't sit in it properly with the new cast, but we have some ideas that were going to try and do. Maisie's not too keen on moving around with the new cast, it looks like she's got a baby bump, so when she's on her tummy she rocks with the curve. I have managed to get a picture of Maisie's wound too....

....the dark redness is the Granulation Tissue, that will be treated once the cast is off! This new cast is heavier than the last, and is more awkward to pick her up and hold her, but we will get used to it!....

Steph xxxx

Cast Change coming soon....

.....Maisie is getting her cast changed on Thursday 5th May, we have to be at The Royal London Hospital for 7.30am, and is not allowed to eat anything from 2am, apart from diluted juice until 6am...this I can see now, is not going to go down very well with Maisie! I'm quite nervous about going, as I've been having some really good looks at Maisie's wound, and it doesn't look pretty at all, to try and explain; its like the scar itself has got mushed-up jelly ontop of it! There is a very distinctive smell starting to come back too, but we are unsure if it is the wound itself or the bandage on the inside - this is quite badly stained -  I am hoping that while they have her cast off during the change, aswell as all the checks the surgeon is going to be doing, I hope they will wash her right out around her wound, I have been cleaning it myself with Stei-Pod's that we got on prescription, we both think that as I am cleaning it with sterile dressing's each nappy change that this is helping to keep it at bay a little bit.  I do wonder should there be any infection still left, what the hospital will do with Maisie to get rid of it keep her in and put her on I.V antibiotics or send her home with what would be her 6th course since having the operation!..

....Other than that, Maisie is doing great, eating a little bit more than she has been doing, which as a result she is putting a little more weight on from what she lost! Sanny pads are working a treat for through the night!!! I would recommend to anybody facing this situation to "stock up" on them! The Dentinox is working a treat still, which is fab! It does feel like she's a little baby again, having to sit with her while she drinks her milk, and then winding her again! Maisie is on the move so much now its unreal, this past week she has learnt how to flip herself back and forth - only while she's on the bed or sofa - she finds it hillarious, and it keeps her entertained for ages, she was sniping along the carpet this morning, all over, this way, that way, any way she could get herself, watching her as she slides along the floor, her cast bashing into walls or any other object that is in the way, then as she drags herself the cast just slides around the object, the only down side of all the movement this morning, as she is only casted to her knee on her "good" leg, Maisie got an amazing friction/carpet burn on her knee, I have been repeatedly putting sudocream on it today to get it to heal asap!...

Steph xxxx

Tried & Testing....

....Things seem to be on the up for Maisie, she is still on the antibiotics, but is almost finished with this course. Hopefully it will be the last course she needs! Although Maisie has developed a rather nasty temper since having the operation, she is getting back to being our funny lil moo moo! Moving around is getting to be really good for her, she loves having time on her front to move around and grab things, she looks at you with such amazement and joyfulness, its really lovely to see her "enjoying" her time in her cast! Tonight was quite funny, Maisie had only been in bed around an hour and a half, she started to cry, which has become a regular occurrence, as I went into the bedroom to check on her, I found her halfway down her cot, with her back arched over the leg support blanket we put under her legs to keep her heels elevated, and her left foot was wedged in between the cot bars, but as soon as she was freed and back to how she should be laid in bed, she was fine....

....Nigh times are quite bad at the moment with Maisie, we have started putting Dentinox Colic Drops into her bottles of milk, to stop her getting trapped wind/indigestion, which so far is working really well for her. She does wake quite a few times through the night, and just around every night ends up with Maisie in the bed with me and poor Alan on the sofa! It does mean less sleep for me as I don't sleep properly with her in the bed, always conscious of her, but it doesn't bother me either! =) I was reading on the Yahoo Hip Dysplasia forum the other day, and I was reading about different ways in which to enable the rather odd nappy wearing to soak more up, as Maisie wee's a lot through the night, even changing her through the night still left her with a damp/wet nappy in the mornings....as I was reading the posts and opinions, I saw that a few people use either a sanitary pad or incontinence pad to line the size 1 nappy with, which helps with the absorption...so tonight while getting ready for bed, I used the only decent pad that I had in the house and put it in the size 1 nappy, then put the size 6 nappy over the top of it all, I do hope that it works, because Maisie's urine really stinks at the minute....off all the antibiotics!...

....Also while changing Maisie's nappy earlier this afternoon, I got her in the right mood to be able to have a really good look at her scar (with gloves on) from what I could see, it looks quite a nasty scar, and still has some form of a lump on it too, but the lump has gone down loads since last week, so I'm happy about that. Some of the stitches came off the other day too, me being me, put them in a small snap-bag with a bit of paper and took a photo....lol!!....

Steph xxxx

Hard times....

....We saw our surgeon last Tuesday (12th April 2011) because the anti-biotics that were given to her for this low grade infection on her wound had not cleared it up. The surgeon took a look as best she could and did say that the wound from what she can see has healed nicely, but there's this "cluster" of skin right inside the cast, probably at the top of the wound, and stuff is still oozing out of it, so the surgeon suggested that Maisie has another blood test to check and make sure that there is no infection in her blood, she also gave her another 5 day course of anti-biotics (same ones). We explained how difficult we have found it to give these to Maisie, the surgeon explained that; a) a little is better than nothing at all, & b) to get the syringe to the very back, behind the back teeth pointing to the cheek (so she doesn't choke) well that didn't work either we still got covered in it so ended up giving it to her with Alan pinning her arms down and me putting a towel under her chin, getting bits in her mouth at a time then putting the towel over her mouth (but not covering her nose, so she could still breathe) to force her to swallow more that she spat out, although this is awkward, it worked....

....Maisie finished her anti-biotics on Sunday 17th April 2011, but there is now some funny bright green coloured stuff coming out of the wound. This morning (Mon 18th) I rang our GP's secetary to ask how I can get the results of Maisie's blood test that the surgeon requested she has, the GP's don't get a copy of this, but she did say that she would look into it for me ring me back and let me know. Anyway around 1/2 hour later the surgeon rang, apologised that she had not been in touch sooner but that the bloods had only just come back, and said that they look "normal" for Maisie's circumstances. I explained to her what was coming out of the wound, so were going to her local clinic tomorrow ( Tues 19th) so she can have another look at her and decide on what the next best course of action is! Later on this afternoon, I had a call from our GP, I explained that I had spoken with the surgeon and that we were seeing her again tomorrow, the doctor had gotten hold of Maisie's blood results, and was concerned at her Haemoglobin level being only 8.9 (Dr said it should at least be 11), she rang through to a consultant at The Royal London who said that a HB level like 8.9 is normal and is due to blood loss from the operation. Maisie was discharged from hospital with a HB of 8.8, 3 weeks later its still only 8.9, however, all this would be good apart from the fact that Maisie only lost around 14ml of blood in the operation (about a tea-spoon) so doesn't really account for a HB of 8.9, Dr has requested another blood test to check her iron stores in her blood to see what there doing...

...other than all these constant hard times were faced with each day, Maisie is progressing so well, her little spark is starting to come back fast, which is lovely to see, tonight she was on her rocking horse and she absolutely loved it, so much so that when we took her off it she cried to go back on...so we let her have a little longer on her little bright pink rocking horse! Although Maisie tires quickly she loves the tummy time, where she can just manoeuvre herself around, its really lovely to see her playing like a baby should play. We watched some video's on Alan's phone from before Maisie had the op, and just watching her, walking around and the general happiness in her voice all seems like it was a lifetime ago, yet hurts like hell to know that whilst doing something to benefit her when she's older, we have taken away one of the things that she loved most....her freedom! Life seems hard looking after an almost toddler in a Hip Spica, its one hell of an experience, and really tests you as a person, I am realising that I'm much stronger than I thought I was, but just because I'm always smiling, doesn't mean that's how I'm truly feeling, I hate seeing Maisie in this cast, you can look at her sometimes and she just looks sick of it all, many tears have been shed from us all in the short space of time that Maisie's had her Spica on, and no doubt there will be more to come. For now the only way is forward, once we have gone forward so far, that's when we can move up =)....

Steph xxxx