We have been one busy family -- and that's a very good thing. This weekend I had a great photo session in the morning and later in the afternoon we took the kids on a hike on the horseshoe trail -- as far as Gavin's wheels could go until the terrain got a bit to rough! Then on Sunday we were able to take part in the Sesame Place Challenge, sponsored by the Variety Club, giving families with children with special needs a free day at the park. Despite the heat we had lots of fun! Gavin didn't do so hot in the heat as he does not regulate his temp very well, but we managed to get a few smiles out of him.
Gavin has been having a tough past few days. Today he has been running a fever, which we still are trying to determine if it is hyperthermia or true fever. Also, despite getting blood last week his counts are again very low and we will be heading down to duPont on Thursday for a transfusion. The other issue we are having is with little fingers that pick off his ostomy bag at night! Other mom's with ostomy experience -- what the heck do we do? We tried all the basic stuff and nothing has worked. On top of daily blood and gastric juice baths we are also having major issues with tangling at night. Although Gavin does not crawl or walk he does roll back and forth -- over and over again! He gets himself so tangled we are afraid that one of his lines will snap. To give you a better idea Gavin has the following lines attached to him at night:
Ostomy drain tube.
Apena monitor complete with two cables.
G-tube hooked to suction tubing.
Urine Cath, which is kept in overnight.
That a total of eight lines that get into a complete rats nest.
What do other parents do?