Day 8 - Smiles, walking and discharge planning

Another early start to the day. Despite ceasing overnight continuous PEG feeds at 4am Alex wasn't interested in breakfast at all. So we've decided to cease overnight feeds all together in the hope it may stimulate his appetite 🤞

After transferring back to bed I received my first smiles since surgery which was just lovely! Hello Alex... Nice to see you again 👋

He was then hooked up for a 1 hour PEG feed via the pump which currently occurs after every meal if he hasn't eaten followed by 3 hourly water feeds. 

Neurosurgery are happy with our plan for discharge Friday. The wound is healing well although I literally have to be on constant guard as Alex takes every opportunity to get his hands in his helmet to scratch at those stitches!

The Rehab team reviewed us. They were slightly concerned by our decision to discharge Friday but I assured them we have a good team in Newcastle and I felt Alex would improve best at home. He had a small focal seizure while they were at the bedside which lasted 10 seconds and made him drowsy for the following hour. I don't think this event helped fill them with confidence! 😂

We saw the Dietitian who adjusted the feeding plan. She has made arrangements so that we can have access to feeds and a pump at home along with local follow-up.

The Complex Epilepsy CNC saw us and gave me a hand with finding a solution to protect Alex's wound from his constant scratching. Part of the issue is a reaction to the adhesive tape which was attached to his scalp. A plan was made for the stitches to be removed Friday morning on the ward.

Neurology visited to discuss a medication plan following this morning's seizure. We are going to hold tight for a few days on the current schedule and reassess if seizures become too regular.

Speech visited at lunch to assess swallow and chewing. Alex performed well by managing to eat 3 nuggets and 3 chips! We discussed oral feeding plans moving forward and she's directed me to some free online training called the SOS Approach to Feeding...when I have time! 😂

The Rehab nurse visited to deliver the new pump for home and commence education on its use.

The Physiotherapist visited and Alex did a wonderful walk down the corridor to the nurses station and back to his room. He got a cheer from the nurses and it was just wonderful to see his mobility improving! I took some video but can't seem to upload it on the blog unfortunately. This is a screenshot though

By the time all this occurred it was 4pm. I decided to take Alex off the ward in his stroller rather than complete his shower as I needed a break from the constantness of medical interventions and was getting cabin fever!

5pm was dinner but he refused to eat so I managed to score a free meal. Then it was time for all the evening meds, PEG feeds, flushes, nappy change, ring home and that's a wrap for today.

I've ordered ready-meals to get delivered home on Friday to take the pressure off a bit  Now to co-ordinate support workers, Allied Health follow-up and equipment for our discharge home....oh and hopefully some sleep! 😴