A Lil' Boy's Journey to Live….

12/26/08

Well…Happy Belated Christmas to everyone.  Sorry I haven’t updated.  Things have just been crazy!  We got home from CHOP on Monday.  Riley came home with a NG tube until his surgery on January 6th to place the GTube and to have the Ladds procedure.   We do have a pump to use for feeds.  He refuses to take a bottle at all. 
Anyway….I was extremely glad to be home for Christmas, but it was a rough day.   It actually started in the middle of the night on Christmas Eve.  Around 1 am Riley woke up crying  and throwing up.  He was very unconsolable.  We ended up calling the Fellow on Call around 2.  They told us to stop his feed and wait a couple hrs.  We did that, but Riley was still up all night.  It was a night that reminded me of being in the hospital.  A night, that had it occured there, they would have kept us another day.  The whole thing was scary because Riley has sooo many things wrong with him that any of them could have been causing the problem including his heart, or it could be a normal baby thing like teething, but the only way to truly know would be to go back to CHOP.  Although….when we were there they couldn’t figure out what was wrong.  I just know once we go to CHOP we are staying.  Anyway….this led to us being VERY tired on Christmas day.  Riley was also not his self.   It was not how I thought his First Christmas would have been.  His gifts at home aren’t even open yet.  Oh well I guess.
I will say, though, the doctors at CHOP are AWESOME!  Since we called them on Wednesday night they have called us about 6 times just to check on Riley.  That is very comforting to know that they are there, and they care.   I’m not sure that Riley will make it at home till the 4th with the feeding issues we still seem to be having, but our fingers are crossed!
Thank you to everyone who helped to give our family a good Christmas.  Thank you to Jackie, Melissa, Chris, Julia, Katy, Terry, my parents, Jim and Shirley Jacobs, Lil Deli in Riverside, Chris, Riley’s Speech Therapist, and Bancroft, everyone at GCIT, and everyone at CHOP who helped to get us out of there for Christmas.   Hopefully I didn’t miss anyone.  The best part of most of these people is they are strangers.  That just shows that there are truly caring wonderful people out there.  Thank you to all of you.
Thank you to Becca McLean for your great emails.  Sorry I haven’t gotten back to you, but trust me I will.  With the G-Tube coming it will be nice to have someone to talk to who has an idea of what Im going through.  Riley’s situation with his heart is pretty unique so its hard to find others going through the same thing so having Becca to talk with about the G-Tube will be nice.
Well…..our life, right now, seems to revolve around feeds.  It seems like by the time he eats and we clean the pumping system its time to set it all up again for another feed.  Not to mention getting his 9 meds. in through out the day.  We are kinda on pins and needles too.  If we have a feed that Riley doesn’t tolerate by throwing up and being unconsolable we have to take him back to CHOP.  That is making the everyday a little hard, but we are getting through.
Please continue to pray for Riley.  Even though we seem to be focused on Riley’s feedings right now his veins are still a huge factor.  We will go back for a Cardiac Cath probably soon after discharge from his surgery.  Thats assuming we don’t end up doing it while we are there.  You just never know whats going to happen.
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