The days in the hospital seem so LONG! And yesterday was no exception. It ended up being a good day, but it certainly did not start that way; "Momma Bear" had to make another appearance. Elise was scheduled for to down for placement of her central line at 8:00 am yesterfday morning In preparation for this, the nursing staff kept her NPO- "nothing by mouth" starting at 2:00 am. Around 8:05 am, the nurse came in and tells me that I can go ahead and feed her because she has been bumped until tomorrow for the procedure. I'm not sure of my exact words, but it was along the lines of, "No, that's not happening; I will feed her after she gets her central line placed, which WILL happen today as planned."
I demanded to speak face-to-face with the attending physician, patient advocacy representative, and a hospital administrator. Of course, the GI resident pops in, and I may or may not have asked him whether he had become an attending physician overnight, and if not, he needed to go and get an MD who makes actual decisions. So then the coordinator from Interventional Radiology came in asking if I wanted to "discuss my concerns." I told her, very politely, that the next person who comes into our room needs to be able to fix the obvious problem. Finally, a hospital administator showed up, and this guy was actually ready and able to take care of business. I explained to him that I could not even fathom the idea that TCH would allow a 15-month old child with a known history of failure to thrive and compromised nutritional status to be kept NPO for 6+ hour in preparation for a procedure, only to "bump" the procedure until the next day intending to repeat the whole routine again--THAT, I emphasized, is unacceptable, irresponsible, and in fact detrimental to her health. He took notes and then stated he would make some calls to see if he can resolve the problem. He returned within minutes, with our attending physician in tow, and I was told that "a breakdown in communication" had occurred, but it was taken care of, and Elise would go for her procedure at the next available time slot. Literally, within the hour, she was on her way down to the Interventional Radiology department for placement of her central line.
Okay, so moving on…
The liver team rounded as usual, and we reviewed Elise's curent labs, which look terrible; in fact, her labs have never been worse. On a positive note, Dr. Himes informed me that she is currently NEXT in line in this region to receive her type liver!! We discussed the fact that Elise's deteoriating condition is part of the normal disease process of Biliary Atresia. They reminded me that they have told me from Day 1 that she would likely require a liver transplant within the first 2 years of life. They also reviewed the fact that this situation is exactly what they have been expecting and planning for; it is the precise reason that they moved to list her for tranplant "early" 7 months ago, and as a result, she is now sitting right at the top of the wait list at the moment when she is becoming really very ill.
I also had the rare opportunity to speak with our transplant surgeon, Dr. Goss, yesterday. I had mentioned to our attending physician that I had a "list of questions" specificially for Dr. Goss, but I was not sure that he even heard me much less that he would actually facilitate a visit. Apparently, this "momma bear" is being heard these days!! LOL!!
Anyway, included in my conversation with Dr. Goss was the following:
a) Elise needs a "left lateral lobe" of a liver rather than a whole liver due to her transversed organs and malrotated intestines.
b) Related to any expected complications, Dr. Goss said, "Just forget everything you read on Google; those are national statistics, not TCH statistics." While I do appreciate his confidence, I still probed further, asking about specific complications such as Hepatic Artery Thombosis (HAT) and primary graft failure. He responded, bluntly, "Those things do happen--rarely- maybe once/year, and when they do, it's catasrophic." He then went on to review measures that they take in order to avoid these complications in most cases.
c) Living Donor tranplant as an option for Elise. Dr. Goss says he does not feel we need to aggressively pursue this route for Elise, as he feels fairly sure that they will be able to obtain a deceased donor liver for her, which will work wonderfully.. Of course, he said it can not hurt to have testing done and line up a living donor "just in case." Also he indicated that he and his partner, Dr Mahoney, would be doing both surgeries if we needed to move forward with a living donor transplant.
d) I asked whether they ever go into transplant and find the native liver to actually be in better condition than they expected based on the labs and imaging. He stated that "old livers" in patients with Biliary Atresia are cirrhotic or otherwise not compatible with long-term survival in 100% of cases that go to transplant. He further indicated, specific to Elise, that he suspects her portal vein may be in worse shape than it appears on ultrasound; he stated that he reviewed her many ultrasounds and is not sure that the vein identified as the portal vein, which does show blood flow, is actually her her portal vein. Without going into more detail on this, I will just say that I am very relieved that tranplant will likely be happening sooner rather than later.
a) Elise needs a "left lateral lobe" of a liver rather than a whole liver due to her transversed organs and malrotated intestines.
b) Related to any expected complications, Dr. Goss said, "Just forget everything you read on Google; those are national statistics, not TCH statistics." While I do appreciate his confidence, I still probed further, asking about specific complications such as Hepatic Artery Thombosis (HAT) and primary graft failure. He responded, bluntly, "Those things do happen--rarely- maybe once/year, and when they do, it's catasrophic." He then went on to review measures that they take in order to avoid these complications in most cases.
c) Living Donor tranplant as an option for Elise. Dr. Goss says he does not feel we need to aggressively pursue this route for Elise, as he feels fairly sure that they will be able to obtain a deceased donor liver for her, which will work wonderfully.. Of course, he said it can not hurt to have testing done and line up a living donor "just in case." Also he indicated that he and his partner, Dr Mahoney, would be doing both surgeries if we needed to move forward with a living donor transplant.
d) I asked whether they ever go into transplant and find the native liver to actually be in better condition than they expected based on the labs and imaging. He stated that "old livers" in patients with Biliary Atresia are cirrhotic or otherwise not compatible with long-term survival in 100% of cases that go to transplant. He further indicated, specific to Elise, that he suspects her portal vein may be in worse shape than it appears on ultrasound; he stated that he reviewed her many ultrasounds and is not sure that the vein identified as the portal vein, which does show blood flow, is actually her her portal vein. Without going into more detail on this, I will just say that I am very relieved that tranplant will likely be happening sooner rather than later.
So, it is now the early morning on Thursday, January 24, and it is a brand new day! I hope and pray that it is a good day which brings us good news. And as always, we would welcome the best news possible, "the gift of life."
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