October
31 days of dreams come true
Our Awareness video made for our beautiful SB and Hydro warrior showing our journey with Maya. :-)
Lots of fun in her wheels!!!
Mayas Birthday Party invites
Perkins Great Eastern Run
We celebrated Mayas 3rd Birthday with our SHINE family running in the Peterborough Perkins Great Eastern Run. Team hungry caterpillars raised around £700 and we were joined by team Daisy and Team Tilly, Benny Bear and Shine's Chairman Richard Astle who was completing the 10K as one of his chairman challenges as welL as many others to raise lots of money for SHINE charity. Fantastic day with Fantastic people... Same again next year everyone?!?! :-D
SHINE's video of the days best bits
Poorly Maya
On Wednesday 22nd October Maya became very poorly. We rushed to our local hospital at Peterborough with an unresponsive Maya and she was admitted to HDU. She seemed to be in some sort of status type non convulsive seizure. The local hospital performed bloods, ct scan and tried to start her on medication but were unable to get a line in and she was unable to take medication orally. In the early hours of the morning the decision was made to transfer her to Addenbrookes for further investigation and treatment.
We were admitted to the Paediatric Oncology and Hematology ward at addenbrookes as there was a bed available and the bed manage felt this would be a suitable place for maya to get the level of care and treatment she may need. Through the night we were visited by several different teams including neurosurgical, neurology, oncology, urology and nephology and other specialist pediatric consultants to examine and investigate her. A canula was put in and she was started on intravenous fluids and antibiotics.
Maya remained like this for several days. It was very traumatic and we had no answers. Different tests were performed and different speecialists were called upon but no one seemed to know what was going on with Maya or if she would get better. We feared the worst and this was one of the worst weeks of my life. I felt like we had lost our beautiful little girl. Our loving caring happy smiley little chatterbox of a daughter. I longed for her to shout 'Muummmyyy' In that tone three year olds use to get your attention. for her to demand cbeebies on and to play with playdough and draw pictures. I thought she would never ask for sausage and mash again and that i would have to cut it up just right and put it on the plate just as she likes it and wait to pour the gravy on otherwise she always asks more! I was clutching at straws, loosing hope and I was almost defeated. Thankfully I have the wonderful support of my family and Aaron's family. Especially my mum. who came and looked after max. drove backwards and forwards to the hospital and back so i could be there for both my babies. She was my rock and there to pick me up and drag me though it all to be there for Maya even though it must have been so hard for her to see us both that way. (Love you Mum!) Also to all my wonderful SB/hydro Mummies and Daddies (Especially Hannah, Nikki, Charlotte, Claire, Kathrine, Jo - Kathrine's Mum, Selina, Tracy, Sally, Emilie, Laura and Sonia to name but a few), the wonderful group Spina bifida and Hydrocephalus parenting support group on facebook and all our friends near and far with out all your support, information and advice I really dont think we could have got through it! Also SHINE charity and all the amazing people who give us support through their work including Robin and Gill with their health advice and everyone else been our no.1 supports!! :-) (THANKS GUYS!)
On the 27th October (5 days after we were admitted) Maya started to show some improvements. She started to drink fluids again but had still lost most function of her arms. unable to sit/move. unable to talk or eat but could cry and for the first time she looked at me (rather than through me) and moved her hand out for me to hold her. By lunch time she began to start to take notice of her mobile and bells a little but she was very very tired and slept pretty much all day and night and only opening her eyes when we woke her.
On the 27th October (5 days after we were admitted) Maya started to show some improvements. She started to drink fluids again but had still lost most function of her arms. unable to sit/move. unable to talk or eat but could cry and for the first time she looked at me (rather than through me) and moved her hand out for me to hold her. By lunch time she began to start to take notice of her mobile and bells a little but she was very very tired and slept pretty much all day and night and only opening her eyes when we woke her.
The following day (28th October) was a much better day. Maya sat up for the first time in a week. She had started taking interest in things and playing. We had some words return too and she recognised who we were. She woke up in the morning and said mummy and daddy and when Nana visited at lunch time she said Nana :-) My little girl had returned. Although a long way off been how she was there was great improvements and HOPE once again.
Unfortunately on the 29th October Maya took a turn for the worst again and had another 6hr long episode with lots of siezure activity. She had long lines inserted into her arms and legs for access to give her life saving medication. She was ventilated and put on oxygen to help her fight. After 6 long hours of fighting she started to show improvements and was able to breath independently again. Unfortunately her lines stopped working and the decision was made to fit an ng tube (the tube in her nose) so we could still get her medication and fluids into her tummy safely. She was very sleepy and unaware of what was going on around her but she was made comfortable and we hoped she would recover again. The decision was made that a full body mri scan was needed but that they would wait til the following day hoping to give her time to recover before anethetising her for the scan. They believed she was too unstable to have it that day and that she needed the anastetic as the scan would take about an hour.
Her MRI was performed on the 30th and came back with some abnormalities to her brain. It was unclear though if any of the abnormalities were new due to the nature of her conditions and previous meningitis. she has significant areas of brain damage and areas of structural concern and has unusual brain activity related to her siezures and epilepsy. However they did rule our shunt malfunction/blockage. swelling of the brain and spinal cord. She had a settled day and was recovering by the minute with function gradually returning. By bed time she was able to hold her book. say some words and take sips from her cup although her ng tube remained and they managed to get canulas in theatre when they did the MRI scan giving new access for her medication.
Happy Halloween!
By the following day (31st October) Maya had made a really good recovery and was able to sit up in bed again. She enjoyes dressing up for Haloween as Harry potter and went to the play room to enjoy spooky games and crafts! This seemed to make a world of differnece to Maya and we had smiles back and her tubes were able to come out as she was eating and drinking again (thanks Mich the ward chef for your perseverance and creativity!) By the afternoon she was even able to tolerate being in her wheelchair again for short periods of time and even made halloween cupcakes for the ward. Thank you to al lthe team on the Oncology and Haematology for all your hard work. Superb care and amazing nursing. Thank you also to the fantastic play team who helped get Maya back on track bring us toys and things to stimulate Maya and then lots of things for her to enjoy once she was feeling up to it! They do such a great job!
We were finally discharged a few days later. With no real explanation for what was happening or if in fact it would happen again. With lots of follow up appointment to attend to keep an eye on her.