Sleep deprived

I haven't posted only because I have been utterly exhausted and running around like crazy.  Ty is fine, and we are all home!  We just haven't slept much for days on end and it's been brutal.  Ty was totally mixed up in the hospital because of the anesthesia, chemo and surgery.  He slept so much during the day that he was up all night.  He still isn't sleeping much at night since we got home on Thursday, only difference is that now he's not sleeping during the day, either, making for a very cranky family all around. 

At the hospital on Thursday, we had a nurse practitioner on the floor who knows us very well.  She asked us why we weren't going home, and we told her that the TPN (nutrition) team wants us to stay until Friday to make sure Ty's electrolytes and potassium remains stable as they taper down the IV feeds - otherwise he could be at risk for hypoglycemia.  She asked us if we had a local resource we could use for bloodwork and we both sat straigher in our chairs saying "yes, of course!"  So, why can't the levels be checked at home?  If we promised to get the labs in before 11AM on Friday, the pharmacy would have plenty of time to tweak the TPN medication before we need to hang it Friday night.  So began the mad rush to arrange everything in time so we could bust out of there!

(sidenote:  TPN stands for Total Parenteral Nutrition.  It is a large IV bag filled with potassium, dextrose/sugars, vitamins and lipids that go straight into the bloodstream.  Since Ty isn't eating well and he doesn't tolerate his feeds, TPN ensures him an extra 700 calories over a 12-hour period each night.)

Without getting into too many details, we arrived home Thursday night and it was completely chaotic with our home nurse meeting us upon arrival and spending 2 hours with us (!), Gavin acting like a lunatic and Ty whining non-stop with repetive demands like "I want to sit up... I want to lay down... I want to sit up... I want you to pick me up...I want a different show on..."  See!  Some things in my life are totally normal :)  In fact, my wonderful neighbors came and dropped off two delicious meals for us and I felt so bad because I could barely talk and get to know them amidst all the noise.  I felt rude, but I'm sure they understand.  I can't say enough about how helpful everyone has been.  So much of the help and support coming from complete strangers, too. 

Yesterday was totally frantic as well.  After my experience at the Putnam County Hospital, I found a much better resource at Vassar.  The Dysons Cancer Center and infusion lab bent over backwards for us.  They allowed us to come in first thing, they had pediatric oncology nurses, they had cartoons, coloring books and just overall kindness with Ty that went such a long way.  But, upon leaving I just had a feeling that something would go wrong simply because it always does.  I called Sloan Kettering an hour later (10AM) to let them know that I had the bloodwork done and to see if they got the fax yet.  I didn't get a call back until 2PM to tell me that the fax didn't come through yet.  I was on the phone for the next couple of hours to make sure they followed up with the lab, got the information they needed, and spoke to the pharmacist so they could make Ty's TPN for that night.  The pharmacy didn't get the order until 4PM.  The medicine didn't arrive at my doorstep until 11:30PM.  Ty woke up for the day at 4AM.  At least we did get a few straight hours in.  Enough to feel a little rejuvenated this morning and give me the energy to get back online.   

Ty is getting so strong!  Lou challenged him to sit up on the couch without pillows today, and Ty did it proudly!  I couldn't believe how long he sat up like this, playing and watching TV.  Probably about 15 minutes!  This will be great because it builds the muscles in his back and neck.  After he gets better with holding his upper body up, we will focus more on his legs.

I just watch a whole bunch of home videos that we've taken over the past nine months.  It is jaw-dropping, really, to see how far Ty has come.  He is such a fighter, it's amazing.  Here he is... the one and only... sitting up like a big boy and playing with a train.  I had trouble trying to edit this down, so please ignore my precious Gavin and his bad attitude about sharing.  Ty calls hin "The Lunatic" for a pretty good reason, and we all love The Lunatic like crazy :)  I just wanted you all to see Ty sitting independently, and how darn cute he is!

XOXO love, Ty.