More Sun Then Rain

Somebody has found his sillies again...any guesses who? 

B's little body is still very much exhausted but he's finding little bursts of energy which are encouraging.  He's also gotten his 'flirt' back on with all the 'girlfriends' so life isn't too rough.


His lungs are still audibly wheezy and such but the RT said that internally they are certainly sounding better.  They weaned his oxygen down to 2 litres today without any incidence (and literally as I'm typing this he has his first desat to 85 while sleeping!!!).


Diaper snacks?!

They've upped his TPN amount and lowered his overall IV fluids to get him more nutrition.  I wasn't here today when the g-tube Nurse came by but they suggested using meplex around his stoma to stop the leakage but when I got here tonight his sleeper was soaked and the meplex was hanging off (doesn't do well when wet).  So the stoma is still leaking a good deal even though he's only getting the odd med/flush through it.  I'm not too sure why at this point.  The balloon seems intact and even had more fill in it then normal.  I'm curious if something is going on internally, some breakdown on the inside maybe.  I'm hoping surgery will be by tomorrow so that I can show them and pick their brains.  We can't get B back onto his g-tube feeds until it is resolved (or at least found a reason).  TPN is great in the meantime but it is only a short term solution when your are running it through a PIV.


It's nice to see our boy coming back again, even though he's sounding rough.  He is pulling himself up on his knees and certainly behaving like a 2 yr old when he's annoyed!  I did have to tell him he's not allowed to throw the projectiles (toys, syringes, etc) at the student nurses yet as they're not paid!

A large thank you to my friend Peter who came by to check on Mr.B and brought his Kalimba with him for B to enjoy.  B loves music so much and it nice to see him laying there enjoying Pete's playing.


No news from Cardiology today either, but that is a good thing it means they are not concerned.  They have pulled back a bit on the steroids that they are administering and it has seemingly made a difference.  His heart rate is still low but not scary low like it was yesterday.

Slowly but surely our Bug is working on beating his bugs!  The crummy part is that we've got a seating clinic appointment tomorrow for B's new wheelchair (yay!!!) but they won't let us go down to it (something about having three viruses and being contagious...).  I'm really hoping that they can come up and at least do the initial fit for us!  So exciting!

Hoping that tomorrow brings more sunshine as much as I like dancing in the rain, this Momma's tired out.


From Our Home (Unit 2) To Yours...