Alright, there is a lot to catch up on since I was gone. I just got back last night and boy have there been some changes since Monday night. This morning they had to take the PICC line out because of the possible infection and the high risk of that infection going into the bloodstream. Now, with no PICC, he had to get an IV and this makes things a lot more difficult because of the amount of meds that he is on and the fact that he struggles when he gets medicine orally. The good news is that when they tested the blood cultures today everything was negative. If we can get one more negative blood test then they can put a PICC line back in and we can get back on our normal administration of meds.
They also took out his NG tube, which feeds him, for a little bit because we think that it was upsetting his stomach and causing the vomiting. We are going to try to get rid of all the poop in his system by giving him a double dose of Miralax along with his fluids. Hopefully we can clear his system, then get back to feeds and hopefully get into a routine that way. The tube is back in his nose now, but the feeds are not going.
Yesterday he battled a fever all day long but you wouldn't know it by the way he was interacting with everyone. Yesterday and today he has not slept very much and has just been as happy as a clam. We think the lack of sleep may be because they have taken away his morphine and lowered some of his other medications and he is just feeling more active. He is currently asleep right now, but that happens when you have been partying since about 1:00 a.m. He is such a happy little guy and loves to play, we can't wait to get him home so he can really play. The fever is still there today, although it is very low.
Yesterday was also "Another Round For Robbie" back in Kansas City and we want to send a huge thank you to Mick Koch for putting this event together. This year the event was partnered with the Eagle Club (Liberty North's Booster Club) so it didn't have quite the same feel as last year, but the intentions were there and we greatly appreciate everyone's generosity in helping us out. There were 11 teams that played in the event and we had 22 hole sponsors. These funds have really gotten us out of some tough spots and allow us to continue to get Robbie the best care possible for all of his special needs. We can't wait until next year's tournament so we can all be there and help make it another huge success.
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