Upright again..

Rachel texted me at lunchtime today to say Naomis is sitting in a chair next to her bed. After 9 days horizontal she is feeling a little dizzy, but very proud and happy to be able to see more than the ceiling! Later on in afternoon she was weighed, amazingly she has lost no weight. She has grown 4.5cm as a result of the operation though !

A busy day on Bed 2...

Art class, Cookery class (yummy carrot cake), the postman arrived arrived three times, the plastic demin brace arrived, the orthotists measured it and took it away to finish it, they will bring it back on Thursday. At 7pm the team decided it was time to remove the feeding tube.... to everyones astonishment Naomi did it herself... no pictures of that!

One tube left...

Today started at early with Naomi pulled on her bed outide to the plaster theatre to have her brace cast. This seemed to go very smoothly, especially as she had been plastered from shoulders to waist 6 times before, and wasnt phased at all. We're hoping the brace will arrive on Wednesday afternoon, and then we can start getting her slowly back on her feet. This evening the Ward Sister told Rachel and I to go to the local pub for a break, and some time together. We had a couple of hours to chat and a bite to eat. Naomis anaesthetist had visited whilst we were away, and as Naomis sats were at 95% she asked that the oxygen be taken away at night-time too. The last remaining tube is the feeding tube, which all being well will be removed on Wednesday.

Wow - I can use both hands again!

Naomi had her last canulas removed today (Monday), she now just has the nasal feeding tube, and oxygen at night. She is going to Plaster Theatre first thing on Tuesday morning to be cast for a new brace to wear until the next operation in 4-6 months. We are expecting this to be hard as she will have to lay on her front for the first time so they can cast her back. The hospital school tracked her down today and arrived with a special easel so she could paint. They also rigged up a laptop, as expected she found her way quickly to the HSM2 website! She was also able to look at the blog for the first time.

Sunday lunch with ketchup!

Another quieter day today. Naomi is having a sleep this afternoon as Rachel swapped with me to stay the week. Naomi wanted ketchup with lunch... another sign she is on the mend. Her lungs sounded better today although she still needs oxygen to maintain her saturation levels. This may change once she is able to be more upright, after she gets her new brace which we are hoping she will go to the Plaster Theatre for on Tuesday. Adding this an hour later, Rachel has phoned me to say her Anaesthetist has taken away her oxygen when she is awake... a huge step forward. She has also had her hair washed, and her 30cm scar re-dressed.

Skittles and Titanium

Naomi is having a more relaxed day today with less clinical stuff going on. She needed it! Shes watched Finding Nemo and Surfs Up, in between sleeping and spending some time with her brother Luke who visited today. They took her morphine pump, and IV fluids away at lunchtime today.. 2 less tubes. She could finally use both hands, and the first thing she did was to pop some Skittles into her mouth through the hole in her oxygen mask. Her feeding tube came out at 2am, and she was very brave allowing the nurse (and trainee nurse!) to put it back. Here are her titanium rods. Astonishing to see how straight her spine is now. We are so thankful.

Heading to the childrens ward today

Naomi had a more stable day yesterday, and is starting to eat. She is watching a DVD at the moment, in between physios and doctors. At 10pm last night she was hoisted onto a massaging bed to stop any pressure sores. At lunchtime to she will be transferred to the chidrens ward, but with regular visits from the High Dependency Unit to monitor her heart and lungs. You can pray especially for her lungs to work efficiently. We have some first visitors today.... It will be great for her to see some familiar faces.

We found an internet cafe!

Hi Richard here.... We stumbled across an internet cafe on site... so we can give you some updates much more easily now! Naomi was stable and calm at 11pm last night we left her for 6 hours to get some rest. We feel much better for it... Admist the wires and tubes and titanium, Our Naomi is still the same... Im overwhelmed at her courage and inner strength being turned every few hours. We managed to rig up a DVD player this morning at let her watch Ratatouille for a little while as a distraction from the endless medical stuff and hourly physio. We so thankful for your thoughts and prayers. Reading the comments here in the cafe brought tears to my eyes....

Much needed rest

Richard and Rachel are hoping to get a better night's sleep, they've been running on adrenalin for the last couple of days so really need a good few hours to crash.

"We had had a long morning of consultant teams to see us. The lovely dietitian has been, and is happy to start tube feeding. They are keeping a close eye on her heart and might talk to our Oxford cardiologist.
Our spinal surgeon has shown us the x-rays and the bottom curve is now straight and the top is at 20 degrees. Naomi is lying down so we won't know what that looks like until she is able to stand up. There is a lot of metalwork, the rod with 2 bolts at the top and 2 at the bottom. She is being very brave, a bit tearful when she has to be turned onto her side every couple of hours. Looking at her through all the tubes and everything she is still her very sweet self.

First night

Naomi had a fair night. She has adequate pain control - too much morphine will slow her bowels down too much. She has slept on and off throughout the night, although she was sick on water a few times. Every 2 to 3 hours she is being turned onto her side and is being very brave.
They hope to start giving Naomi some food and drink today, she has a feeding tube down in case she needs it. Her face has puffed up due to being face down during the 5 1/2 hour operation. Rachel and Richard are catching a bit of sleep, taking turns to be with Naomi.

Operation complete!

Richard has reported a successful day all in all. Naomi was prepared for surgery at 8.30am and the operation took 5 1/2 hours, everything went according to plan. She is recovering in the high dependency unit and is very sleepy, having morphine for the pain. Naomi will need to be turned over every 2 hours now. Richard and Rachel managed to pass the time feeling at peace which they are very thankful for.

7am Tuesday 22nd Jan.

We spent several hours on monday with the surgical team. Naomi had an MRI and Xrays. We have asked all the questions on our minds and feel at peace. We have been told she will be going into theatre at 8am this morning. When we arrived yesterday the sat nav said "you have arrived at your destination - guidance ends at this point".... but we know our God guides from here on. Naomi is calm for which we are very thankful. We are expecting her to be out of surgery early afternoon.

All clear for the 22nd....

Rachel had several phone calls today with the team at the RNOH and after a visit to the GP Naomi has the all clear for the first operation on Tuesday 22nd. She hasnt gained any weight and her lung function measured again yesterday was 38%. This is due to the 70 degree bend in the spine compressing her lungs. She is otherwise in good shape though.

We are now turning our thoughts to what to pack for an extended hospital stay and the logistics of the next few weeks. Rachel and I will stay at the RNOH from Monday to Friday for the operation and the expected days in ITU. Rachel will come back home for the weekend, whilst I stay with Naomi. Then we swap, with Rachel back with Naomi, whilst I juggle looking after Luke, getting to the hospital for a few hours each day, and try to keep work going.

Growth rods have recently been re-introduced as a treatment for 'early onset' scoliosis with good results.