Wednesday, March 18, 2009

Could it be a...PLAN??

Well, I think we actually have a plan for Keegan's teatment for the first time in the last 143 days we've been inpatient since September! Yes, you read that right. We had a very productive meeting with Keegan's team this afternoon, and while it is a bit ambitious, I think it is feasible. Here's a quick summary:

1. Increase g-tube feeds of Elecare formula - Originally, their numbers called for 24 hours of feeds, 12 hours of higher volume during the day, 12 of less volume at night, at least 26kcal formula. He can probably handle the daytime volume fairly well, and he's pretty close to his goal per hour already. The night feeds are standing in our way. Maybe he'll make it to the 35ml/hr goal fine with the anti-vomiting medication he now takes, but it seems unfathomable to me. We'll see how he does. If he handles a 5ml/hr jump in his overnight volume tonight, then tomorrow we'll try the 26kcal. This is what we are most nervous about feeding-wise, so please pray that Keegan can tolerate it this time.

2. Decrease and stop TPN - Tonight, we are cutting Keegan's TPN to only 8 hours. BIG step down from 14, and it's half the previous volume. Ultimately, the doctors would like to see Keegan reach their feeding goal by sometime next week, stop his TPN altogether (yes, you read that right!), and take out his picc-line before he is discharged hopefully within the next week to 10 days. Which brings us to....

3. Follow-up care - Obviously, we want Keegan out of the very germy, infection-risky hospital, and we want him off TPN. The doctors are hopeful we can get both of these accomplished within the next week or two. What they're not sure of is how he will handle being on just tube feeds without TPN support at home. SO, that means they are requesting we stay in Boston for up to a month after our discharge to be followed on an outpatient basis by GI, cardiology, and hematology. We weren't wholly surprised by this request, but it's still a little disappointing. However, we absolutely don't want to go home to Dallas prematurely and end up right back in the hospital. If spending spring in Boston means we get to go home FOR GOOD this time, then hello opening day at Fenway! We will likely have two to three clinic visits a week while here to watch Keegan's bloodwork and weight very closely. If he struggles at all with his weight, hydration, and/or nutrients and blood counts, then we'll go back to the OR for a new port and go home to work on feeds with TPN support.

The last noteworthy point from the meeting is that Keegan's heart is in good shape, but he'll be on a small daily dose of diuretics to keep it pumping strong for the foreseeable future. If we can resolve his GI issues to cardiology's satisfaction, we'll drop his immunosuppression further in an attempt to help his white blood cell count stay up. Today, he was back in the severe neutropenic range, but the rest of the week should be better with his GCSF altered just a touch. His red counts are holding thanks to the blood from last week.

That's the plan for now. Gray and I are very nervous about the next month or so, to say the least. This is very ambitious for Keegan, and this timeline is considering he takes off like a rocket with no set-backs in the process. Please pray with us that the setbacks are few and that we are home in Dallas to stay in the not so distant future. We couldn't have made it this far without the love, support, and prayers of our awesome family and friends, and we are so grateful and humbled that you would continue on this long journey with us.

Maddie

p.s. Thanks for your help this week, Mama! Keegan's going to miss his Mamie for sure!