More shingles and another fracture

Anna’s shingles looked like they were beginning to clear up by the end of last week so she came off her aciclovir (anti-viral medication) and hyperhydration. Everything seemed okay but then over the weekend new spots appeared. So, on Monday she went back on the aciclovir. The anti-sickness medication continued and she’s back on hyperhydration (aciclovir can be quite toxic to the liver so they hyperhydrate to flush it through). It might be another five day course or longer – it depends on how quickly the rash starts to clear up.

Her gripper site (where the gripper needle plugs into the port-a-cath under her skin to give her medicines and fluids intravenously) has shingles around it and was inflamed, bleeding and oozing fluid. Her gripper was taken out for a short period to see if it could recover. If not, she would have needed a cannula in her hand. Neither reinserting the gripper into a sore and open wound or having a cannula put in were attractive options. However, she needed one of them done as otherwise she wouldn’t be able to have anything intravenously. so she was very brave and had the gripper put back in. I think it was very, very sore

Anna’s bones are so thin and weak that slight pressure exerted in the wrong place can cause a fracture. She woke up on Friday morning with a sore knee. The doctor examined it and she was sent to x-ray. Although initially there was no sign of a fracture, closer inspection revealed a small undisplaced fracture just above her knee in the growth plate. So although the cast on her arm was taken off on Friday, she was only cast free for about an hour. After a lot of discussion with the nursing team we now have a very detailed care plan in place specifying exactly how she is to be moved for toileting or going into her wheelchair, specifying how many people are involved and when the hoist is to be used.

The daily weekday routine includes a visit from the hospital and outreach teacher, a session with the physiotherapist, discussion with others such as the dietician/dentist, a visit from various doctors (oncology, orthopaedic, general registrar) as well as regular medication (she is currently on metoclopramide for sickness, Oramorph on request for pain, cholecalciferol – vitamin d, posaconazole – antifungal, aciclovir – anti-viral, potassium – blood levels are low) and observations. She is also still having an overnight feed through her NG tube as her appetite has not picked up.

Her red blood count is still low so she has had 2 blood transfusions in the last week. Her platelets are extremely low so she has had a platelet transfusion. She is neutropenic (her neutrophil count lower than one so she is unable to effectively fight infection). Her liver function has not been good but has not deteriorated further.

Despite all of the above, she is mostly smiling, laughing and singing. She’s in bed tonight with everything she needs – her new doll Emily (thank you Jim), piggy, sick bowl, NG tube with feed, IV tube with fluids and Disney princess blanket.

A great holiday… and now off to school

It’s been a great summer holiday –
Nathan has enjoyed his football coaching classes and outdoor activity days at almondell country Park. Anna has enjoyed Barnados summer club, days out with me and other family, had hospital stays, fractures and various other medical interventions.

Both have loved going away to Rachel house children’s hospice (an amazing place!), up north with granny and dad and, for the last week of the holidays, to (the wonderful) Crieff hydro with auntie Mary and her two girls (and Courtnay, Neil and the children). Thanks all for being there – it made it even more special.

My plan over the summer was to involve Nathan in as many energetic activities as possible, both to use up his never ending supply of energy and also ensure he was doing the things he really enjoyed as i feel he does sometimes miss out because of Anna’s needs. At the same time, I wanted to allow Anna to be as normal a little girl as possible, and do the same things as other 5 yr olds .

It’s generally worked out that way – although it seems impossible to tire Nathan out! Anna particularly enjoyed Crieff hydro, where she was able to go into the children’s club along with all the other children (up to 6 hours a day!), eat high tea with everybody, dance at the disco and laugh along with the magician.

However , it’s also been very, very hard work. Anna’s day time care needs over that period of time has been absolutely exhausting. Even Crieff Hydro, with 6 hours a day in the children’s club, was exhausting as I still had all the overnight care. Anna continues to wake several times every night asking to be turned on to her side or back, usually around 1 o’clock 3 o’clock 5 o’clock 7 o’clock. At the moment she’s tending to be sick both in the night and as soon as she wakes up. And Anna going to the toilet is always a huge effort for all involved – maybe more on this in a future post.

Yet we finally made it to the end of the holidays and Anna starts P1 tomorrow. It feels like a huge event, for all kinds of reasons. I have the same feelings as all the other P1 mums and dads but also I’m very aware that Anna at times seemed unlikely to make it this far.

So we are ready – or at least nearly ready – even though there have been several hiccups along the way. Her uniforms has been bought (after trying on numerous outfits due to her swollen stomach not fitting many things), her school bag is packed, the travel plans are falling into place (taxi company are in the process of ordering and installing the snapdragon lock down system for the car, and Anna’s motability vehicle is on its way), the medical room has been converted, a hoist has been installed and tested and a new P7 buddy chosen.

After a quick trip to A&E this afternoon, Anna now has matching casts on her legs for her first day at school. The left leg cast is on as a precaution after an accident today. X-rays showed no fracture but it will be reviewed on Friday at fracture clinic when the other cast is taken off, which is on following a fractured femur some five weeks ago.

Both Anna and Nathan are upstairs asleep. Tomorrow is going to be a big day – for all of us.

Second fracture

Anna fractured her femur again last Friday.

I was away at my Pampered Chef conference when it happened but both granny and dad looked after Anna, with Auntie Clare taking charge of Nathan. It seems that her bones are so weak that even a bit of pressure can cause a fracture. At the recent meeting with the endocrinology team, ongoing treatment was discussed and it was suggested that we hold off unless she had another fracture. So, having now had another fracture, treatment looks likely to start at some point soon.

The whole week has been quite a juggling act as Nathan is on school holidays. As always, it’s been with help and support from a whole number of people. So huge thanks to everyone that has been involved in looking after Nathan. And of course thanks to everybody has helped me both in the hospital and at home, trying to make sure that somebody is with both Anna and Nathan when necessary. Both granny and auntie clare have spent quite a bit of time at the hospital this week, which has been a huge help.

It has been increasingly difficult moving and lifting Anna in the house and there has been an ongoing discussion about manual handling over the last couple of months, especially as she prepares to start school. It had been agreed that a hoist be put in place in the house as well as in school. Obviously that has become even more important as she has her leg in a full cast – hip to toe – so a number of people have been busy this week ensuring that the hoist will be in the house on Friday ready for our return home. It’s not been straightforward – there have been a few problems along the way – but once again people have gone to great lengths to make sure things work out for Anna. Thank you. We really appreciate it.

After Anna had her leg x rayed and put in a cast on Friday, she was admitted to the hospital (ward two was full so we came to ward four). Most children would have been sent home but it was felt important to monitor Anna, especially as after previous infections/fractions she has shown signs of poor liver function and associated concerns. This time there seemed to be no real problems. She did spike a temperature on Tuesday (it went over 38°C) but that seemed to resolve itself. Today, she has had her leg recast, with the knee slightly more bent and another x-ray.

Both Oncology and the surgical team have given the go-ahead to be discharged. I’ve had discussions with both the dietician and pharmacist. We are just waiting for medicines and I’m about to pack everything up in the car and head home. A hoist arrives at the house tomorrow and we’ll start practising. Hopefully it will make at least some things easier.