Friday, October 3, 2008

Our first night at Sloan

It was a tough night. We are in isolation since Mike has been having loose bowels. They want to test for c-diff and stuff before they will let us play in the playroom or anything so we are stuck in the room for the next few days.

The IV that he came up from Florida with is in his left hand. He is a thumb sucker and only his left thumb will do so as soon as he moved the IV beeped because he bent the line. That went on about 5 or 6 times before we realized what was causing the occlusion. The ended up putting a board on his left hand so that he didn't bend it but the nurse was good enough to make sure he still had thumb access. That thumb is the only comfort that the kid has and I am damn sure not taking that away from him!

So, after all that craziness last night they decided to put in a new IV in his right arm this morning. He is acting good, his belly isn't as distended so I feel better about that. He still has a massive case of testicular edema but apparently that's normal in kids with new shunts so I am hoping that clears up soon so he is a little more comfortable.

Apparently some of the MRIs w/ contrast didn't transfer over on the discs I had brought up so I had to call down there this morning to make sure we could get that stuff burned and fed-ex'ed up. I just spoke to the neurosurgery PA in Florida and she is going to make sure they are all done and sent up today. We are hoping that once they come up we won't have to do any more MRIs here until after the diagnosis comes in and we start treatment.

We still have no final diagnosis. I am hoping that since I brought up all of the records, the pathology slides from the surgery done on Monday and a frozen piece of the tumor from the spine that the pathology department here can get a diagnosis from all that sooner rather than later.

Thank you all so much for your prayers and good thoughts. Please keep them coming!! Love you all and I will keep updating when I can!

Love,
C

2 comments:

Anonymous said...

Mike and the family continue to be in our nightly prayers.

Anonymous said...

Sending my prayers for little Mike! He deserves a trip to Disney when this ordeal is over. I will meet you there to celebrate! that is a PROMISE!!!
Gina in Palm Coast