Saturday, 10 December 2011

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

Tuesday, 1 November 2011

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

Friday, 21 October 2011

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

Thursday, 22 September 2011

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

Wednesday, 21 September 2011

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

Tuesday, 20 September 2011

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

Wednesday, 7 September 2011

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

Tuesday, 30 August 2011

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

Wednesday, 3 August 2011

...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 

Wednesday, 27 July 2011

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


Saturday, 23 July 2011

Getting on with talking.....

....Since having her operation, Maisie's speech has become fantastic, be it her age and a part of her growing and learning, or going from being able to walk to being immobile for the best part of the 3 months she was casted for, I'm impressed with her. As you can see in the video, these are some of Maisie's favourite words....



Steph xxxx

Tuesday, 5 July 2011

1st post Spica check up.....5th July 2011...

....It seems like a lifetime ago that Maisie was wearing her Hip Spica Cast, and the way it dominated hers and our lives in simple everyday activities. This has all now changed and we are focused on life without a Hip Spica. For now Maisie's Spica chair has been put away, we do plan on letting her use it again, when her leg is staying straight all the time, and we want to make the seat a bit softer.....

....Maisie saw her surgeon today, who is impressed with the standing and movement that Maisie has re-learnt herself to do in such a short space of time. She did all her checks on Maisie and gave us some light physio to do on Maisie during nappy changes - she did want it done at bath time too, but I told her we cannot keep Maisie still in the bath, she shuffles herself up and down the bath the whole time she is in it, which the surgeon was fine with. She now wants to see Maisie again in 4 weeks time. I also asked her about Maisie splint as it keeps getting loose and we did not know if it was right that it did that, but that Alan has been tightening it to keep it like it was when we first got it. Maisie's surgeon did not know anything about this, as it was the plaster technicians who deal with them and that we should give them a ring and speak to them about it as they can best advise...

....For the first week after Maisie's cast was removed she did very little if anything at all. It is now 2 weeks & 5 days since the cast was removed and Maisie is now able to walk pushing the push along walker, she has a huge limp, and she walks with her right foot flat on the floor, with the left only on her toes!! Things are finally starting to change for the better. I can dress Maisie so she looks like a "normal" baby again....

Steph xxxx

Saturday, 18 June 2011

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

Wednesday, 8 June 2011

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

Friday, 20 May 2011

"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

Saturday, 7 May 2011

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

Monday, 2 May 2011

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

Tuesday, 26 April 2011

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

Tuesday, 19 April 2011

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

Monday, 11 April 2011

Moving, Playing & Medication.....

.....Things have gotten worse with getting Maisie to taker her paracetamol and fluxocicillin antibiotic, personally I really do not blame her for not wanting the antibiotic...I got a taste of the so called "lemon flavour" antibiotic, ugh it was wrong!!!! There is not a chance on this earth anyone would call that "lemon" it tastes worse than adult paracetamol!!! As your refusing and literally spitting it back in my face, I thought maybe mix it, get some other ideas etc;: Making a game of it -resulted in more screams and anxiety. Let you do it as well - made tons of mess and stickiness for you to then launch the syringe. A spoon - nope not a chance could i get it anywhere close to her mouth without her arms wriggling free to knock it out of my hand. Mixing with food - we tried it in her bottle of milk, her cup of juice, favourite flavour yogurt etc, Maisie could tell each time when we had put in in something!! After finding that there was not a chance that Maisie was going to take these antibiotics with anything, we knew we would just have to try and force you for your own good, so we thought of holding your mouth shut to make you not have a choice in swallowing it - yes this did work, but the screams you gave out were heartbreaking, it was wrong and it felt wrong to do that! NOT AGAIN!!! We were informed by Alan's Mum that holding your nose stops you being able to spit something back up, so this is now how you are getting your antibiotics, propped on the floor (Maisie's too jumpy to be safe on the knee) Alan pins her hands down, i place a towel under the chin to catch dribbles, through the cries and the tightly shut mouth, I wait for the almighty open, close your nose and squirt some in, yes it takes around 4-5 squirts from the 5ml you should be having, but it gets most of it in the system!

Playing is getting better and better & more and more each day, I find that more time is being spent in the Spica Chair each day, as playing with toys in a new way is actually quite fun. As Maisie was in her chair today, i caught her opening her arms wide and grabbing the sides of the chair with each hand, getting a firm grip and then pulling her waist from one side to the other, in the tiniest bit of space that there is where the harness is at the each side. I am thinking that once the antibiotics have stopped, I may look into some natural kind of pain relief for Maisie, she's getting distressed having to keep taking all these different medicines, its not nice, we shall see.....

Steph xxxx

Friday, 8 April 2011

The first movement......7th April 2011

....What a day we have had today. Maisie was being how she normally is - playing, shouting etc etc. After around 2 hours kip she woke up and after a cuddle was happy again. Maisie managed to wriggle about while she was laid on me, so I asked Alan to lay the duvet on the floor and put a pillow in the middle of it, we then placed Maisie's stomach over the pillow, out of curiosity I started to make a video on my phone....Maisie really amazed us, 2 weeks post-op and she has started to commando along the floor a little, I'm so chuffed i filled up when i saw her doing it...

Steph xxxx

Wednesday, 6 April 2011

6th April 2011......expensive trip anyone???

....Woke up this morning and went to change Maisie's nappy. There was more of the seeping stuff from yesterday, only this time it was more blood-like looking. Rather than ring our GP we tried to get hold of the surgeon, but there was no answer, so we rang the switchboard at The Royal London and asked to be put through to an orthopaedic doctor, once they were on the phone Alan explained about the seepage yesterday and what it was like today, the lady on the phone said that she would get them to ring us back after 3.30pm. Within 10 minutes of hanging up the phone they rang back, she had spoken to the ortho and they wanted to see Maisie at 11.30am!!! the race is on to get ready, best prepare for her needing a bottle etc. We rang a cab, and he came for about 10.40am. We got to the hospital just after 11.30am, which was lucky, but they were fine with that as they knew how far we had to travel, we showed the ortho the nappy from this morning, and he was a little concerned and wanted to have a proper look at her wound. We went round to the plaster technicians room and it was the same bloke who put the cast on Maisie, he said "this is one of my casts, last time i saw you, you were asleep" together with the ortho they both looked at the cast and what they could do to enable them to see the wound without weakening the cast itself. They decided to cut just a small piece out from the front, but clipping a bigger part where the bend at the top of her leg is. Once he had cut the piece off the doctor came in and pulled the sticky dressing that was put on her after surgery, this was very damp and a little on the smelly side, there was also some fluid running from her wound which he took a swab of. Upon examining her wound he told us that he wanted to put Maisie on some antibiotics as she has a low grade infection, and he wants to get on top of it to prevent it from getting worse. Because he had pulled the dressing off, and there wasn't a chance without fully removing the cast that he could get another one in, but he did say that we would be better with some soft swab gauze folded in half to soak up the seepage, and to change it every time we change her nappy. The ortho also wanted Maisie to come back next week and see her surgeon Ms Maizen, so she can have a look at it, and go from there on how the antibiotics have worked. Maisie is to see her surgeon on 14th April 2011 at 2.15pm....

Steph xxxx

5th April 2011....

....We tried to get Maisie an appointment yesterday about the muscle cramp she had, but they had nothing. We did make her an appointment for 6th April 2011, but this morning when we got up and took her nappy off there was some fluid-type stuff that looked like it had seeped out the side of the cast at the top around where the nappy is inserted. To describe is was like a very pale brown in colour yet had no odour? So Alan rang the doctors and they could fit her in today at 11.30am!!...

...I took Maisie to the doctors and explained everything, she had a look at the stuff that was seeping out, and said it was most probably left over blood, as she couldn't smell anything she didn't want to give her any antibiotics, but said to keep an eye on it, if it gets any worse we should take her back. For the muscle cramp, we should put her paracetamol back up to 4 times a day to try and help, provided she's not had cramp in the next week then we should start to reduce the paracetamol and see what happens....

Steph xxxx

3rd April 2011......oh no

.....Maisie had a pretty good day today, which is great, she finished her antibiotics, which is good, at last now were just on paracetamol wooohoooo!!!! Maisie went to bed as normal, and settled well, but she woke around 10pm and she was screaming like you've never heard a baby scream before, there was obvious pain somewhere...Alan cuddled her for a while, then I took over, we tried putting her teething stuff on her gums because she's teething again, but that did not help at all. Alan was stroking her right leg and foot, we did wonder if she was getting cramp as we know this can happen with a child in a Spica Cast, Alan gently put his finger into the cast on the right side as its only to her knee there is a nice gap around the top of her leg to get a finger in, Alan could feel the muscle that had tightened up....Muscle Cramp.....poor baby, she was screaming the house down in agony with it, I personally have never experienced cramps, but Alan does frequently, so I know how hard it is for Alan to deal with as he gets them really bad. I cannot see my baby like that again it was horrific. Maisie's muscle cramp took around a hour of screaming before it went away, then we had to get her settled again so we could put her back to bed! Will be making Maisie an emergency appointment with the doctor in the morning and see what they say about it....

Steph xxxx

2nd April 2011.....a&e trip

.....We had to take Maisie to a&e this afternoon, as her right leg and foot was freezing to touch, even after wearing toastie socks all day. Firstly Alan rang NHS Direct, who put him straight through to a nurse, she advised us, as Maisie is only 9 days post op, we should contact the ward for their advice. Alan then rang Grosvenor B at The Royal London Hospital, explained everything, they advised we took her to a&e to be checked over to make sure there is nothing wrong with the cast....

....We got a cab to a&e and were there for about 5pm, we waited around 1 1/2 hours for an orthopaedic doctor to come and check her over. He said that as her foot had warmed back up a little, he thinks that it is positional rather than anything to do with the cast itself and said we should just make sure that her leg isn't pressing on any of the cast to prevent it happening....Phew...

Steph xxxx

1st April 2011.......what a scary night

...Maisie's slowly getting back to her old self, it will take time, but its lovely to see bits of her coming back. It was around 10.30pm and me and Alan were sitting watching telly when we heard this sound over the baby monitor, Alan slowly got up to go and check on Maisie, then all of a sudden I heard this noise come over the monitor, I jumped and hastily said to Alan, "she's choking", Alan ran into the bedroom, and all he saw was Maisie projectile vomit into the air, for it to then land in her eye as well as her hair and face and pillow etc. Immediately Alan got her out of the cot, she was screaming and screaming, I cleaned her the best I could, but we had to wash her hair, as it was covered in the sick. After we cleaned her up and put a new nightie on her calmed her down etc, it was 1am and we put her back into bed, with clean sheets!....

....As we already had a doctor app for Maisie today I thought we should mention it, Alan thought it may be the nurofen as she's not eating too much, when we explained to the doctor what she was like, and what she's eating, the doctor said that we should stop the nurofen as her stomach lining was probably sore with not eating enough to cope with the antibiotics and nurofen, which would make it painful and also make her sick....that's it no more nurofen, if Maisie can't cope with her pain on just paracetamol then we will have to be given something stronger....

....Maisie had a whole day free from the stomach-stripping nurofen and she ate and drank a little bit more than what she has done, which is great stuff, hopefully it is all up up up from now!....

Steph xxxx

30th March 2011....

....Our first night home with Maisie wasn't too bad, because my mum and Grandma were still here they stayed in Hailie's room, as Hailie the madam was in our bed! I got into bed with Hailie and Alan crashed out on the sofa. Maisie surprisingly only woke twice through the night, which I thought was brilliant for a first night home....

....We took Maisie over to the school to get Hailie, which Hailie loved, and of course in true 8 year old style, she wanted to show Maisie's cast off to all her friends...that night wasn't too bad either Maisie went to bed at 8.30pm-ish, woke at 11.30pm-ish, it was then that we had to get her up and cuddle her, Maisie went back to bed around 1.30am....

Steph xxxx

29th March 2011.......HOMEEEEEEEEEEEEE

.....When we spoke to the nurses this morning, we were told that as long as the paediatric and medical doctors were happy with the way Maisie is, then we should be able to go home!!! Fingers crossed...

...We eventually saw the paediatric doctors, who said that from their point of view, Maisie's open reduction was a success, there was no complications, and they only needed to do the reduction, there was no need to do the osteotomy, which is fab, however we do have to wait for the medical doctors to say that they are happy for Maisie to be discharged and allowed home....

....Seen the medical doctor in the afternoon, Maisie is fine to go home, but they want her to have some anti-biotics as something is slightly raised in her blood results, so we just have to wait for pharmacy to bring down her paracetamol, nurofen and co-amoxiclav anti-biotic...once they have arrived on the ward the nurses can arrange for an ambulance to take Maisie home on a stretcher....we all know what the pharmacy dept is like in a hospital....."how Long's a piece of string" as to how long the meds will take to come down, oh well, its worth the wait if we get to go home....

....It would have been around 5pm when Maisie's meds were ready, but then her temperature went back up...so the nurses had to get the medical doctor to come and check her over to make sure that she was safe enough to go home as planned! We waited around half a hour for the medic to come and see her, she spent a while reading through Maisie's notes, checking what had been going on over the last 6 days. She came and did some checks on Maisie, and told us that her temperature wasn't that bad as it was the higher side of 37oc, she was happy for us to manage her temperature at home, but stated that should we be unable to control it we would have to bring her back...which we were fine with doing! The nurses booked an ambulance at 6.30pm, and we just had to wait for them to arrive. Maisie fell asleep around 7.30pm, while she was asleep I packed her stuff up from around her cot so that we would be ready to leave as soon as transport came for us....

.....9pm came, still no sign of transport, the nurses tried to ring them to find out how long they would be as it was getting late, but they couldn't get any information on it! Maisie woke up and it was time for her to have paracetamol and anti-biotics, which the nurse gave to her from the drug trolley off the ward. Alan went back to Stevenson House where we had been staying to pack up our stuff, as we both weren't allowed in the ambulance for insurance purposes Alan's mam Maggie was going to take Alan home with all our bags. 10pm came and I was given the thumbs up from the nurse, transport was here, they were just on their way down to the ward....FANTASTIC....we got Maisie comfy on the stretcher, legs propped nicely and they covered her in a blanket to keep her warm and put the strap across her just to be on the safe side, they did ask if I wanted to sit with her on my lap on the stretcher, but there was not a chance I would have been able to hold Maisie for that long, she was really heavy and although I had some confidence with the handling of a child in a Spica Cast, I thought it would be best if she was on it on her own for her comfort. We got home around 11pm, when we got off the ambulance, the driver apologised for it taking as long as it did but he didn't want to go too fast and hit little bumps in the road, so that the journey didn't cause any additional trauma to Maisie, which was really nice....

....I also got to keep the blanket they had wrapped Maisie in lol, oh well never mind, they never asked for it back once they had helped us inside with the bags that I had with me =)....but finally were home and ready to start Maisie's Hippy Adventure.....

Steph xxxx

28th March 2011....

....Things aren't too good, Maisie was sick through the night, & her temperature went back up! The doctor has put her back on the higher dose of the saline drip...during the day Maisie did pull this drip out, and because it was on her wrist (where all the veins are) and Maisie pulled and pushed the cannula, she has hit her tissue's with it, which has caused a little lump to form where the cannula was placed. For now they are going to leave the drip out and see how she goes...

.....Maisie did need more Ora-morph today to help with her pain! Maisie surprised us today with it though, because within a few hours she was as ok as can be after having morphine, but did kind of smile with me for a photograph =).....

....We really want to go home, we know she will start to recover better in her own surroundings and we can control the heating, rather than be in what seems to be a constant sauna on the Children's Ward...I know it has to be like that, but it really is no wonder Maisie's temperature wont stabilize in a very hot environment...hopefully we can go home soon, just need Maisie to pick up eat and drink enough for the docs to give her the all clear to come home....

Steph xxxx