Planning for Home!

Happy Sunday!  A little update on our tough little man.

On Friday, doctors decided they wanted to take Austin to the operating room for his PICC placement.  We were hoping to avoid another round of anesthesia, but his safety comes first!  Since he had vomited on Thursday and he has Downs Syndrome, they felt better putting him out for the placement.  He did great, but woke up very sad.  He doesn't like the way his throat feels when they remove the breathing tube.  They had me go back to PACU (post anesthesia) to comfort him and we were soon on our way back to his inpatient room.  He did great on Friday evening and we restarted his feeds slowly.  He got up to 40ml/hr by Saturday noon and has tolerated it great!  40ml/hr will be his rate for a week or two until we get everything balanced out and then we will begin going up 1-2 ml/week with a goal of 53ml/hr.  Of course this goal could change when he begins gaining weight.

With the new line in, we restarted his TPN/lipids Friday at bedtime.  We have to start out with it running over 24 hours so his little body can adjust to the sugars, minerals, vitamins and electrolytes too, but mostly sugars!  Over the next couple weeks we will move towards 12 hour cycles meaning that he will only be connected to the TPN/lipids overnight!  Thanks to PHS (Pediatric Home Services) coming back into our lives, we will be able to make these adjustments at home!

Speaking of home, the plan is tomorrow!  There are things that need to be in place for us to transition back to home, but Children's is wonderful and we are well on our way!  Austin is already showing signs of feeling better (as you can see in the pictures) and we are very grateful!  They will continue to monitor him (including labs) and make any adjustments necessary to be safe at home and then we will get the go ahead.  If you remember, the hospital can make daily changes to his TPN/lipids and at home we only make weekly changes.

Love and hugs to all!  We are always thankful for your thoughts and prayers!
Go Vikings!
Tara and Brian
Max and Austin