Weve been waiting to post an update until we knew more information, so we are sorry for the lack of updates. I was able to spend most of Sunday at the hospital with Emily and Mike was able to go up after school today. Unfortunately, we werent able to go on Monday and days like that break my heart. Emily has continued to need increased oxygen support ranging from 8-10 liters of high flow and 60-90% oxygen. The attending said to expect it to take a few weeks to get back to her baseline. Emily has also been seen by wound care because due to a severe amount of leaking around her tube, her skin has completely broken down and is causing a lot of pain and possibly infection for her. As far as the pneumonia is concerned, they have changed her antibiotics several times and we hope she is on the right combination now. When she deteriorated so quickly Sunday, at some point during transport, Emilys gj feeding time tube clogged. Its possible it was just bad timing but normally its flushed every 2 hours around the clock and it wasnt being done while she was inpatient. On Monday, her team took her to interventional radiology which we were very unsure about based on past experience, and they pulled her tube to replace it...problem is they have not been able in the past and were not able to replace the tube in the proper location! The tube they placed is no longer in her j (intestines) but her d (right past the stomach). Just a few months ago while we were in the PICU at Fairfax, they had the same issues placing the proper feeding tube, resulting in 2 months of failed feeding attempts until they decided to send us to CHOP. Mike and I voiced our concerns and pushed back at the team to establish a plan to go forward, and after meeting with IR, General Surgery, GI and PICU they agree she almost certainly will not tolerate feeds into her D but they do not feel comfortable advancing the tube farther. Tomorrow, Emily will start feeds and at the first sign of intolerance she will get a central line placed and start TPN. At that point, they will begin the process of sending her back to CHOP for a new tube once she has recovered from RSV and pneumonia. All this means, weve been told to prepare for a few weeks minimum stay and that she will most likely not be home for her 1st birthday.
Posted on: Wed, 07 Jan 2015 06:47:57 +0000