Just want to go home

First admission was Aug 26th.  They let us go home the long weekend for 3 days.  Admitted back on the 6th.  Surgery on the 7th.  We are still here.  I’m more than ready to go home.  I’d like nothing more than to take my son home and see how he does.

Last night’s(early morning) CT showed his ventricles still going in the right direction and getting gradually smaller.  The problem is, since Saturday afternoon, he’s been more symptomatic.  Symptoms being, lethargic, delayed responses, agitated, rashes appearing and going away, and twitching/shaking at times of his right arm and leg.  Patrick’s vitals have all been good despite these symptoms though.

Patrick’s a good eater and drinker.  The mornings are good for him, but come lunch and supper, he ‘slows down’ and has only been getting through half his meals, including the drinking.

Dr. Ranger came in this afternoon, and left scratching her head.  The next steps decided are as follows:

  • Bloodwork when he gets lethargic
  • Consult with Neurology and an EEG
  • Moving down to PCCU (Pediatric Critical Care Unit) and an ICP Monitor put in to watch and monitor the pressure in his head

I’m tired.  I want my son home.  This isn’t the first time for us going through this stuff, but the stays have been longer and longer it seems.  I know we need to get this sorted, and I’m praying it’s sooner than later.

Goodnight my friends, more to come…



One thought on “Just want to go home

  1. hey, look up my friend things will get better. You’re a strong and determind person, this has carried thru to yur son. comming up on Friday for a 7pm head mri. will buzz yuo and see where you are at!

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