23rd February 2011......

...We have been getting prepared for Maisie to have her operation, accommodation is sorted for as long as we need while my Maisie Moo Moo is in hospital..great, that's a huge weight off, plus it wont cost us anything as the Children's Trust have a scheme going where they have big houses to accommodate family's around the UK (each house can accommodate different amounts around the country), but we have it booked, which is brilliant as it means that we don't have to find £400 to stay in London for what could be 5 days could be less could even be more...and i would not like the "on the night price" for a travelodge, not in London! My mum as bought a huge thick blow up chair, with a pink throw to put over it to make it comfy for Maisie after her op! i have also bought some size 1 nappies, invested in "on offer" nappy cream and a few other things in the past week...today we bought the wood that's needed to build Maisie a Spica Chair ;-) all thanks to a new friend that i have made on a Hip-Dysplaisa forum, who has very kindly gave us the instructions on how to build the Spica Chair....we are so grateful for him just taking the time to send it to me so i can understand it, no doubt i have done his head in, as i have asked many questions, but he has answered them all, which is appreciated, i am so thankful to him, and i don't doubt he understands the feelings of having a child with Hip Dysplasia awaiting an operation to correct it.....Alan and a good friend are going to build the Spica Chair together, which is great, i cannot wait until it is finished, still deciding on a design though, not sure what to choose, although i do have a base colour ;-) this is a good start....when i can get hold of the paint that is...need to do some hunting around for the right paint that we need.....

Steph xxxx

18th February 2011.....

...O.M.G.. I rang the secretary's office today to try and find out if there had been any improvements on info about a date...there was no answer so I listened to the recorded message, in it it says that if i ring back the switchboard, and ask to be put through to an orthopaedic surgeons secretary they can try and help...so i did that, spoke to a different secretary, and i explained what i was trying to find out, unfortunately she cannot help with other surgeons appointments, but did say that if i rang the operation waiting list that they might be able to help, anyway, i spoke to a lovely lady who deals with the operation waiting lists, and i explained the situation and asked if she could help, so she took Maisie's full name, d.o.b & address.....as i waited for her to get the information up on her screen it was slightly nerve wracking.....but i patiently waited for what seemed like forever, but am sure it was only a matter of seconds....for her to turn around and say......"YES THERE'S A DATE FOR HER HERE, you will receive a letter in the post!".....my response was..."really?? oh that's great"...all said with a very very shaky voice, heart pounding faster than anything, legs readily jellied and ready to just flop on me....i don't think I've ever experienced a feeling like it.....it's made this whole ordeal properly real...i was nearly in tears, and told her that, explaining that i really don't want to have her put to sleep and operated on but i know that she has to have it done...i asked her if she could tell me what the date was...and told me that it was 24th March 2011.....wow that's not far away, that's not long at all.....need to get some propper preparation started, and ring the really important ones, and let others know.....

Steph xxxx

The Waiting Game......

....Well, after the outpatients appointment we just had to wait for them to contact. After talking with two family members who work with the NHS, we were told by both of them not to just leave them to get in contact with us, as this would not get anything done anytime soon, so me and Alan both agreed that we would ring the surgeons secretary once a week to find out if anything has come to light about dates etc,. We rang the hospital on 20th January 2011, and were informed that the surgeon was off for a week and that she would be back 1st February 2011....so we just had to wait until then to see what was going on.

We then rang the surgeon's Secretary on 2nd February 2011 to find out what's moved forward with regards to a date...were told that our surgeon was talking to another surgeon (who i guess was a higher surgeon than she is) to arrange an operation date, and because she has already seen Maisie at out local hospital there was no need to have an unnecessary outpatients appointment with her at the Royal London....try again next week it is then....

We have started to notice that Maisie's right leg (the good one) is now starting to give way or buckle under her when she's walking..could this be too much muscle pressure with all her weight....or is this leg dislocating as well...as worrying as it is, we had to have it checked out, and although we don't want Maisie to have another x-ray, we knew that we had to be sure before she went in for her surgery....the doctor reluctantly let us have another x-ray and did warn us that the radiographer might say no to having it done so soon after her last one, GP also would write to the surgeon and tell her our concerns about Maisie's deteriorating and worrying state....

...So, the next day 9th February 2011 we took Maisie for her x-ray, and they did let her have it, when they told us to ring our GP in a weeks time, we expressed our concerns and explained Maisie's condition, so they found a Consultant to check the x-ray over for us...which was really nice of them to do that...luckily it came back that her right leg looks normal..which is fantastic!!!! We also spoke to the secetary again today, and were told that our surgeon has left a message for the other surgeon to arrange an operation date and that they would contact us as soon as they have a date for Maisie!!!....

 

Steph xxxx

11th January 2011.....Outpatiens Appointment

...Today is the day that we meet the surgeon who is going to be performing Maisie's operation, 10am! The Surgeon was running around 20 Min's late, but that's not too bad for a surgeon. When we went into the room, Maisie's x-ray was up on the computer, and she explained to us that Maisie will need "open surgery" in an attempt to fix the hip dysplasia!....deep breath.....took that one rather well....the surgeon then checked Maisie's hips, like the same test that's done at birth and at their 6-8 week checks, she told us that she could feel where the left leg didn't move as much as the right leg, and that she could feel some muscle tightness in Maisie's groin area. We asked her if she had any idea on how long Maisie will be in hospital for, the surgeon said it is usually around 3-5 days, but did stress that it all depends on the patient as every patient is different! then we will need to go back after the cast has been on for 6 weeks to have it changed, and while there changing the cast they will also x-ray her hips to see how its getting along. We have been advised from the surgeon that should there be no bone growth Maisie will need a 2nd operation, most probably before her 2nd Birthday. The surgeon also explained that we must not give Maisie calpol to help the aches/pains that she gets as hiding the pain with painkillers will result in Maisie not feeling the pain, doing more, causing more damage, but we are just to let her walk around as she wants too, because Maisie will stop once it aches or if she gets any pain. Maisie is being referred to The Royal London hospital for her operation. Link at the bottom of the post. We were then told to wait for a phone call for a date for Maisie's surgery, but that we would be looking at around April, which we think is too long for such a small child to wait, but we could get a cancellation appointment, so this left us with a waiting game....

Steph xxxx

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4th January 2011.......Paediatrician appointment

...So this is the date that we saw a lovely paediatrician about the x-ray on Maisie's hips, the appointment was at 11am. He checked the x-ray and explained to us that Maisie's left hip is not in it's socket and that there is no socket for the leg bone to sit in, and will require surgery to fix it asap! I have never been so overwhelmed in all my life, I burst into tears that I tried to fight and hold back, I was just so shocked that she would need surgery. We explained that since having the x-ray we had noticed that Maisie's spine was starting to get a curve in it at the bottom, which is a worry, he checked her over on the bed, and the leg length had now changed from the 1/2cm that the physio measured to 1cm...all in the space of a month! He watched her walking around his room with nothing on her bottom half, and could see that she waddles when she walks and he saw the curve in her spine! He was rather shocked it had not been rushed through faster, but told us that he would fax the details as urgent to the Orthopaedic Surgeon, and that we should wait no longer than 3 weeks to hear from them with an outpatients appointment. We left his office quite upset and not really knowing what was going to be in store for us in the coming weeks/months. It is heartbreaking knowing that the perfect child you made now needs major surgery....

Steph xxxx

14th December 2010......the x-ray

...the day of the x-ray. We took Maisie to the hospital to have her hips x-rayed to find out why there was this 1/2cm leg length discrepancy. We laid Maisie on the table and undid her vest and pulled it up so the studs weren't in the x-ray machine's view. I went and stood behind the window and Alan put on a long heavy vest type thing, to protect him from the x-ray. Maisie was very good and laid very still. The radiographer asked us to wait while they checked they had a good enough image.... As we waited one of the staff came back through into the room, and asked us if Maisie had ever had any trauma caused to her....we were shocked at that, but went on to explain that she has had a few falls like all babies do as they are learning, also told them about the time that she tried to escape from her bouncer and got her legs caught in the straps. They just replied with "ok" and walked off!! Me and Alan just looked at each other, not understanding what was going on. While we continued to wait they got a doctor to come and have a look at the x-ray, then they came out of their little x-ray viewing room, and told us to not let her walk about too much and to see the doctor for the results of the x-ray........ So we got in touch with a doctor, not ours as she was not their, and this other doctor referred Maisie to a paediatrician, and explained that we were to wait for an appointment to come through.....

Steph xxxx