18 Mar Update
Keegan has a PICC line now, but we’re not too happy with it. This is really, really hard to explain to people who have never seen or dealt with one. It kinda looks like a massive IV line coming out of the crook of his right elbow. It starts right there at his elbow, and the lumen (ends where IV lines are connected) literally end right just past his little hand, making it the perfect length to grab and swing. We tried turning the lines and threading them up his shirt sleeve (it is still in the 40s here in Boston), but the lines got kinked or occluded. It is so big that there’s a nice-sized hole in his skin where it enters. They’ve tried to secure it with a little device, some clear dressing cover, and tape, but it still eeks in and out just enough to irritate that area. Maybe we’ll get used to it, but I am just despising this thing right now. I can tell Keegan doesn’t like it when it’s hooked up either. He’s been asleep for almost an hour now, and I’ve already unwound his line from around him twice and cleared four alarms for kinked lines. Not fun.
The placement of the line went ok overall. The first problem was that his last remaining IV blew at about 5am while he was sound asleep and hadn’t moved a muscle in over an hour. Who knows. Because of his vomiting issues and vein problems, he had to have general anesthesia yet again and be re-intubated. This time, they were able to use a softer intubation tube, so at least his throat wasn’t so scratchy. It took about 40 minutes longer than the time the radiology team said would be their longest estimate. They had a bit of trouble threading it all the way through his vein to a main artery, but they said it’s in there. Then, his oxygen saturations dropped again coming out of anesthesia. This time, he just needed an oxygen mask to come back, no cannula. Thank you, Lord. Right as we were getting ready to come back to the room from the recovery area, his blood pressure started dropping, but it just gave us a good scare and came back up. No other intervention necessary. What a day!
Tomorrow, we have a big meeting scheduled with all of the specialists on Keegan’s case here at 3pm EST. Gray will hopefully be able to join the discussion by conference calling. This is a big day for us, trying to figure out the plan from here. With no truly permanent access point, I am feeling like we are back at square one yet again. Keegan has tolerated 45ml/hr for a few hours the last two days, and he’s tolerated some much lower volume feeds overnight without vomiting. However, his diarrhea is unchanged, and the next step is to increase the caloric value of his formula, where we often see the biggest problems. Our discussions tomorrow will focus on how we help that aspect because adding more volume to his feeds does very little if he is not absorbing the proper nutrients from the formula. Obviously, he will need TPN support as we work this out, hence the PICC-vs-port debate. I calculated out this evening that to simply maintain his current weight without TPN at the current caloric value of his formula, he would have to take at least 41 ounces a day! I don’t even know how much he would have to take to start consistently gaining weight. Nor do we want him connected to an IV pole 24 hours a day at this point in his development.
Please pray for wisdom, clarity, and open discussion at our meeting tomorrow. Thank you, as always, for your continued prayers for Keegan. We are still very happy and feel very lucky to be here at Children’s Hospital for Keegan’s treatment. However, we can’t help but feel anxious and wary of how to proceed. We have been fighting this battle for so long, that it is easy to lose our focus and our hope that this will ever be behind us. We just can’t thank you enough for lifting our family, especially Keegan, up in prayer during these trying times. More tomorrow after the meeting.
Happy St. Patrick’s Day!
Maddie