Saturday, March 14, 2009


We have had a pretty quiet few days, as expected. Keegan has tolerated an increase in the volume of formula to 45ml/hr during the day, and last night, we ran 20ml/hr overnight ... with NO vomiting! Yeah!! Today, we increased the calories in his formula from 20kcal per ounce to 22kcal. Since all this began, we have not been able to get past 24kcal. Tomorrow, we'll progress to 24kcal if he does well overnight. Then, he'll once again stop his feeds in anticipation of surgery on Monday morning to remove his infected port. The surgeons came by this morning and confirmed that the surgery is still on for Monday as long as now fevers crop up.

So, for now the immediate plan is to have his current port removed, and the surgeons will put two regular IVs in his hands/arms before he comes out of the OR. The hope is that he can keep these IVs to use for half-strength TPN for at least a few days. Unfortunately, Keegan can blow an IV just by breathing wrong, so no one anticipates these will last very long. If we do lose the regular IVs, the next step is to put in a PICC line. You may remember, we tried this with Keegan back in October before he got his port. A PICC line can be used for full-strength TPN, but they are just like a really long IV line. The last time Keegan had one, it became dislodged within 24 hours. The hope is that Keegan will start tolerating enough formula in the next week to not need TPN anymore. Most of you who have followed our story for the last several months will understand that the likelihood of Keegan being able to go from 14 hours of TPN to none in a few days is highly unlikely. Especially because in order for him to gain weight on formula, he would have to tolerate much more volume at a much higher caloric density than he currently does.

We would absolutely love that this would happen so quickly and easily. Realistically, no one thinks it will. We would much rather start turning the TPN down more and more as he takes more and more formula/food. That would be the safe, reliable way to do it. Unfortunately, we don't have that luxury. Keegan will have to go "cold turkey" for at least two days to make sure this infection is completely cleared. The doctors are completely prepared for this trial run not to work, and we're already planning another care conference for the middle of next week to discuss the next steps. We will try to push Keegan as much as possible to take his feeds without TPN, but we are extremely nervous about making sure he is not uncomfortable, in pain, or most importantly, losing all the weight he worked so hard to put on since November.

That's about it for now. Thanks to my mom being here, I was able to go get my hair cut this morning (LONG overdue). Big thanks to the brother and sister-in-law of one of my childhood friends who brought us some good ol' Tex-Mex for dinner tonight. It's supposed to be in the mid-fifties tomorrow and sunny, so we're hoping to get Keegan out in the fresh air. My sister will come up Monday, and Gray should be back in town by the end of next week. We are looking at least another two weeks here, and as much as we love our docs and nurses here, we sure hope it's not too much longer than that!! Thank you, thank you for your prayers. I'll post a short update tomorrow when we have details fro Monday's surgery. Hope you're having a wonderful weekend, wherever you may be!