Day 3 - Light at the end of the tunnel

So the last 24 hours have been tough. Alex's recovery felt like it took a backwards step. He was either extremely drowsy or agitated and in distress. I felt helpless watching him, unable to alleviate his discomfort and not knowing what to do except to buzz the nurses and work through the situation with them. Knowing exactly what the problem was became a process of elimination, educated guess-work then trial and error. Alex can't tell us and sometimes despite our best efforts to figure it out, we get it wrong. He stopped eating after breakfast yesterday. He was upset, his eyes started flicking up and down, he started shaking and vomited twice over the course of the evening needing full bed and clothing changes. The senior on-call doctor was paged and arrived at midnight prescribing an increase in IV fluids. The 6 bedded ward which has been home for the past 3 days was as busy and noisy as ever with multiple very unwell and distressed children. There was little sleep. Needless to say I felt drained this morning. And today was meant to be the day I set off for my 6 night cruise with my aunty. But a new day brings new opportunities. 

We saw the Neurosurgery team who informed us that Alex has some air between his skull and brain which could be causing him pain and nausea. They recommended a rotating schedule of anti-nausea medications including steroids. They also recommended Morphine be used in place of Oxycodone.

Neurology then visited and reviewed the video I had taken off Alex's abnormal eye and leg movements. They are concerned that the levels of one of the anti-epileptics is too high due to malabsorption in amoungst all the other drugs. So a blood test was ordered.

The Dietitian also visited and Alex has now been set up on continuous pump feeds for the next few days which should assist him greatly.

We trialed sitting up in bed at lunch and he ate about 3 crackers. He started to look the best I've seen him in a while so we transferred him in to his strolled chair for 10 minutes. Just long enough to walk him outside for a change of scenery. A small thing but it felt like such a big positive step forward. And just like that the mood is lifted. 
I'm also really looking forward to seeing Matt and Penny this evening who have been back in Newcastle since Tuesday night. And potentially swapping the evening shift with Matt to revive me for the week to come.

Chillin with a book
Dinner attempt - Computer says no

Comments

  1. BelNovember 17, 2022 at 8:25 PM

    What a 24 hours! So glad he was able to get out for a little bit, must have been nice for you both. Sending big love and hugs

    ReplyDelete
  2. Linda WadsworthNovember 17, 2022 at 8:42 PM

    So glad there has been a turnaround since we spoke this morning. Hopefully they are now on the right track. Thinking of you. Love Aunty Linda. X

    ReplyDelete

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