Thursday, March 5, 2009

Keegan Update: Live from Boston!

Hello All…

This blog update will cap off a very good but long day. Keegan slept well for the most part last night. He woke up a few times with some air that needed venting but there was no vomiting. He woke up this morning around his normal time ready to watch Elmo just like he was home or at CMC of Dallas.



We started the day with lots of visits from the doctors. The GI attending and fellow came by first thing to tell us that they had heard from the hospital in Dallas that the cultures from his port taken on the 3rd had grown back positive. We thought this was kind of strange since we had been over 48 hours before we left with negative cultures. They have continued with his “vanc” (high big gun antibiotic) in the meantime. They also stopped by to let us know that we were having a meeting between the cardiology and GI department attendings today around 1pm. This was going to be their first chance to sit with us and go over what they had reviewed from their records. We also got a visit this morning from the infectious disease fellow. They als wanted to speak to us about his port infection.

We will write more about the specifics of what we have seen about the hospital later but before we walked into our meeting I saw the wildest thing. Right outside our room there was a woman playing the harp (yes… a harp, Disney songs in fact…) as we walking into our meeting. Apparently that happens quite frequently. It was very relaxing but a little strange. Believe me… I can get used to nice live music, but it caught me by surprise.

Another nice note before the meeting... Our nurse told us that the attending and fellow on the GI side had been in the conference room all morning doing nothing but preparing for our meeting by pouring though Keegan’s records. She said they have done nothing else pt fill up two large white boards and toss around ideas about his care. Maddie and I were impressed and glad to see they were jumping into things so quickly.

The talk with the doctors went well today. Maddie is so much better than I am abut keeping up with the specifics and the history of what Keegan has been through. I try but I really don’t compare. I really think that meeting gave the Doctors a sense of just how much research she has done on Keegan and his case. We spoke a lot about his infection. It sounds like the short term goal is to put an antibiotic lock on the central line when it is not in use while continuing the “vanc.” They have had some success with that. While we are waiting and watching on that end they wanted to discuss looking for an alternate site for his central line incase it would need to be replaced. They haven’t made that call yet but since it was so tough to find a spot last time they figured they would need to start that early.

We discussed the diarrhea next… they have decided to start Keegan tomorrow on a different elemental formula that we haven’t tried before. It is called Elecare (I think). The hope is that they might see some change over the weekend. If they don’t then they may look at replacing his g tube with a g/j tube. They would use the same hole he already has but the tube would actually be in two parts. One would go to his stomach and the other to the entrance of his intestines. They hope to see an improvement with his motility issues. We discussed a few other things in the meeting but pretty much what I have told you holds true for the short term goals.




We finished the day with the sonogram looking for the new central line sites. That went well, and Keegan fell asleep. Tomorrow he have another echo in the morning, and we are planning to start the elecare formula after that. In the meantime it is getting late so I am going to wrap this up. Maddie promises to post pictures from the trip and the hospital soon. We have some great videos too.




Thank you so much for the prayers… Little man continues to hang in there. Busy making new girlfriends in Boston!




Goodnight,

Gray