Saturday, September 18, 2010


Wow!  What a whirlwind of a day.  All morning we were standing around biting our nails waiting for discharge, then as soon as we came home it was complete chaos until just now, as Ty finally settled down and is sleeping peacefully in our bed.  The reason why I call this post "homeWORK" is because I didn't realize how much work it would be to manage his care from home. 

Without getting into the laundry list of ridiculous mistakes the hospital made upon discharge, the biggest issue is that they forgot to send us home with two of his prescriptions - one of which is an antibiotic that is not easy to come by and none of our local drugstores had it in stock.  In fact, if I hadn't realized it was missing from the list of meds on his discharge papers, Ty could have gone for a week without very important medication.  Lou was in the car trying to track it down for three hours until finally he was able to get it at a pharmacy in Franklin Square.  While that whole fiasco was unwinding, we also had two nurses visit the house to teach us how to administer his medication through IV and his G-tube (feeding tube).  That was interesting with 16-month Gavin running around tossing around everything he could get his hands on.  Hey... he was happy to be home, what can I say. 

I feel like all I've been doing is trying to get some things in order in between the constant preparation for Ty's medication, and then cleaning up after the whole process.  The schedule is something like this.... 11PM, give one antibiotic via G-tube, one via IV.  12AM, flush his IV and remove the bag from his 11PM infusion.  5AM, wake up and administer IV antibiotic.  6AM, flush his IV and remove bag from his 5AM infusion. 8AM administer two medications via feeding tube.  11AM, give one antibiotic via G-tube, one via IV.  12Noon, flush his IV and remove the bag from his 11PM infusion. 5PM, administer IV antibiotic.  6PM, flush his IV and remove bag from his 5PM infusion. 8PM administer two medications via feeding tube.  Start again with the 11PM dosing.  Also, remember to hook him up to a 12-hour feed overnight from 8PM - 8AM. I feel like I did when I was breastfeeding, can't get anything done in between!

Despite how overwhelmed we are, this homecoming was so very special for Ty and we are so so happy to be home.  Thank you so much to our friends and family who sent cards, gifts, balloons, etc.  Ty really felt special walking through that door again.  His smile reached across the room!  What a difference it makes to be home, too.  He is standing with much more confidence, playing, talking, drinking, eating, everything he needs to be doing to get strong.  And being with his little brother again is such a blessing for both of them - they love each other so much (although I definitely have to keep my eye out on GaGa so he stays away from all of Ty's tubes because that kid is crazy with a capital "C").  And, special thanks to our great friend Yasmine who came over to save me during a high-stress moment this evening and allowed me to have some fun tubby time with Gavin.  It feels great to be home.  Good night to you all and thanks for keeping track. 


  1. Oh boy! This home thing was supposed to be great. Well, tomorrow will be better and each day the routine will become...more routine. I'm so glad Ty is home!

  2. We are so happy you all are home. Let us know if there is anything we can do to help. PS-Johnny is requesting more videos of Ty eating lollies. Too cute.

  3. Wow! You are my superhero! God bless you and your husband for trying to smile through it all! You are very special people! I hope things calm down a bit and am so happy for you that Ty is home!! Please let me know if I can do anything!- Erin Barrett Holtkamp