Home again

We arrived home late this afternoon. Naomi is asleep in her own bed quite exhausted from a long day. She has her new brace which is fitting much better than the old one. Not surpising as she has grown 2.5cm and her shoulders are at different levels to before the operation. The physios measured her lung function at 31% post operatively, whilst that isnt great, it is good that it isnt less than before the operation. We will all take the weekend to rest and be family together. Thanks again for you support and thoughts this last week.

More Plastering

Naomi went to the Plaster Theatre first thing this morning to be cast for her new brace. This should be made and fitted for her tomorrow, the style will be the same, but she got to choose a new pattern from the book. The current one is OK for her to get up, but isn't fitting very well. All being well we hope she can be discharged late tomorrow afternoon, though from experience we know this can take some time. Rachel was able to leave Naomi on the ward last night for 6 hours, and get some sleep in the parent accommodation. Naomi faces probably another 12 of these operations before she has 2-stage spinal fusion in her early teens, but knowing the surroundings, the clinical team, how to turn her and get her upright, and how the ward system runs has made this week so much easier to cope with.

Doing well

Naomi went in to theatre at 8,30 today, and we were called to recovery at 11,15. Her sats were a little low so she was on oxygen for a little while. By mid afternoon we wheeled her bed so she could join in a play session with the other children in the ward. She has eaten a little lunch and is resting just now. She will be cast for a new brace tomorrow, but we may be able to get her upright again soon using her existing brace.

10pm.. We found out the ward has a wifi connection so this evening Naomi was able to read the comments on the blog, and spend some time on disney.com. We had a 'moment later in the evening when Naomi's anaesthaetist was called as her heart rate was around 55bpm, should be around 90bpm apparently. We were relieved to find out this was normal for her, due to the effect of her beta blockers. We were encouraged to get her on her feet, and with some complaining (shouting!), she made it to the toilet and back. Rachel has slept this evening and will spend the night with Naomi whilslt I head home shortly before midnight. Naomis surgeon popped by at 8,30pm to see how she was. He said the operation went as planned, and they lengthened her spine by 2.5cm during the operation.

2nd Operation on June 3rd

We have recieved the date for Naomis next operation, Tuesday 3rd June. This time they will extend the rods attached to her spine to keep it straight. We expect she will only be in hospital for 4-5 days for this operation, that we expect will be required every 4-6 months. We know the team well now and know what to expect which makes things easier.

Naomi has the first surgery slot on Tuesday. All being well the surgery will be 2 hours, and if she is breathing well there should be no need go to to HDU.

BBC News..

The BBC came to our home at the weekend to record material for some features they are working on at the moment in association with the UK Marfan Association.

We are so pleased that Marfan Syndrome is getting such good publicity on the media.

http://news.bbc.co.uk/1/hi/england/7305035.stm

BBC Regional News ran the piece over several days.

If you search BBC on 'Marfan Girl' the video is available to watch...

Posting comments

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Thank you...

Rachel and I want to say a huge thank you to all those who have supported us through Naomi's first spinal operation. The cards and gifts, texts and emails, and time with those of you who have visited were a real lift while we were in hospital and now that we are home. Naomi started part-time at school this week and we are praying for her safety around other children. She is at school in the morning and resting in the afternoon. We have booked to go to Centerparcs in the Easter Holidays, with Hair Braiding and a Zip Wire on offer Luke and Naomi will both be catered for ! Her next operation will be in May, though we are expecting the recovery time will be more like 7-10 days.

Back to School

Naomi started back at School today for a few hours a day for this week. Rachel will be with her to get a feel of how safe she is in the school. We have had some great input the last few weeks from friends and family doing things at home with Naomi, and Rachel has tried her hand at teaching. We hope that within a few weeks Naomi will be back at School full time, but this all depends on how tired she gets. We are seeing the consultant again at the end of March just before the Easter holidays.

Can I climb trees !

Naomi has been home a week and is fast wanting to climb trees, kick footballs, go the park etc. We've been told all the exercise she is allowed to do for the next 6 months is walking, and it isnt easy trying to explain this or follow her every move. We are delighted her energy for life is returning. She is certainly ready for schooling, though we need to ensure she will be in a safe envrinoment, without risk of falling. We are in the process of lifting things from floor level in Naomis room as she is limited to the chair and bed for the forseeable future.

Home again

We all arrvied home at lunchtime today...phew... It is such a relief to have Naomi back home and it is so good to be back in a peaceful environment.
Naomi will be at home for 4-6 weeks resting and getting used to her different mobility levels before returning to school.
The surgeon will see Naomi again in March, and is planning the 1st of the 10 or so operations to extend the rods in May.
The link below will take you to a video that we put together during the many hours by Naomis bedside. A similar one we found on You Tube helped prepare us for this time, and it is our hope that others facing this experience can draw from it....
http://uk.youtube.com/watch?v=KANauFWe8y8