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