A Check up 8th April 2012

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

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

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

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

 

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

Steph xxxx

5 weeks - post Spica removal check-up

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

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

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

Steph xxxx

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

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

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

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

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

Steph xxxx

Cast Change....27th October 2011

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

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

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

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

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

Steph xxxx

Almost that time again...

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

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

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



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

Steph xxxx

The next 4 days in hospital....

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

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

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

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

Clinical Details:

Main Condition Treated:

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

Most Invasive Procedure:

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

Clinical Summary:

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

Steph xxxx

Surgery today...15th September

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

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

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

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

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

Steph xxxx