Monday, November 24, 2008

Update

Keegan had a pretty good weekend. The blood he got on Friday really helped give him some more energy. It also brought his heartrate and blood pressure down some. The antispasmodic drug that GI started him on reduced the frequency of his stools into the normal range, but they are still loose. That won't change until we can get him to absorb more of his food. The TPN has kept him gaining little bits of weight though, so he's up to 16.5 lbs now.

Saturday, he accidently disconnected one of the fittings on his central line, and he lost some of the nice new blood he got on Friday. It looked like a crime scene in a movie on his bed, but all in all, we don't think he actually lost as much as it appeared he had. I guess looks can be deceiving when it comes to blood. I had to throw out his white socks because they were completely soaked. If there was a positive from having to reaccess his port, it was that he had his first bath in 6 weeks! He really enjoyed it. Bathtime used to be one of his favorite times of the day - still is I guess. Sunday, he tugged on another fitting, so we've now started taping them all together to avoid any more disasters.

The pancreatic enzyme levels are back, but GI is having a team conference tomorrow with all of the GI attending doctors and fellows to discuss how best to treat Keegan. I've only heard that some of the levels were low, some were not, and some were indicative that the enzymes he's creating aren't working the way they should. I don't know what any of it means yet, but we'll be sure to update when we do know. Really, all we know now is that they are discussing them and will let us know tomorrow what they plan to do about it. If he begins to process and absorb more of the nutrients from his food, then we will be able to leave his TPN on for less time each day, reducing the risk of him playing with the line again. The great thing about the levels at least being back is that we can work on starting treatment with Keegan this week and maybe go home next week. We were so worried the labs would get caught up in the holiday and not be back until next week, giving us yet another week in the hospital figuring out what to do about them. Hem/onc was still processing their labs, and Dr. Rodgers said they can't tell us much more until they have their "complete picture." Right now they are concentrating on his red blood cell production and trying to find out how to increase the length of time between transfusions.

THANK YOU so much for your prayers!! Tomorrow will be six weeks since Keegan was admitted, and we are finally on the right track. It is so encouraging to see him in a good mood and with great energy. Today, he was such a fireball that I mentioned something about him being hyperactive to Dr. Fixler. He looked at me and said, "that's how normal babies are supposed to act." We've given him blood and good nutrition with his TPN, and boy howdy, is he a handful! That's what we get for naming him "little fiery one"!! I'm almost scared to see how active he'll be when he's actually eating and digesting his food!! We are hanging in there and getting ready for the next step thanks to your support. We just can't thank you enough. Please continue to keep Keegan in your prayers as we find the best course of treatment for him.