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.