So as most of you know, Parker’s labs the last few weeks haven't been so hot. His kidney function still looks great; however, his immune system left the building, and another major concern has been the fact that all of his blood counts are super low. Platelets, hemoglobin, hematocrit, white blood cell counts and red blood cell counts aren't even close to the normal level. They are even lower now than before the CMV diagnosis.
On Tuesday of this week, we were called into an emergency transplant clinic appointment where Jason and I planned to go in with our guns blazing. We felt like the big picture was being pushed aside for all of these "maybe" situations. For a year now we have been dancing around the fact that his liver disease has been progressing. We completely understand and respect that his team is being thorough, and ruling out all of the minor causes before doing any invasive procedures, but we were ready for answers. We have always known, and have been told, that CHNOLA cannot accommodate Parker's liver needs now that we have progressed to this point, as they do not have the technology or expertise here for the proper testing and procedures that he will need. So before going into this appointment, we researched the best hospitals for us to seek second opinions on, not only based on their level of expertise, but also what was best for our family. We had our top 3 picks ready to discuss with them, and ask their opinions on. Well to our surprise, they beat us to the punch. Our transplant doctor quickly came in and said the same things we had been thinking. He agreed that we could be tip-toeing around the bigger picture AND he began recommending to us one of the hospitals already in our Top 3! It was like the heavens had opened and everything aligned.
On Wednesday, Dr. Arias, his liver specialist in New Orleans made the appropriate phone calls to Texas Children's and discussed Parker's case with them. They spent a lengthy amount of time going over everything from the beginning, and Dr. Himes feels like Parker needs to be seen in Texas immediately. By Thursday I was on the phone with Denise, the coordinator, who is amazing! She is about as thorough as they get, and definitely my type of lady. She gets things done and doesn't leave any stone unturned. We got records from all of the necessary fields of expertise who have seen Parker or run tests on Parker, including the Operative Report and Discharge Summary from transplant. We ran insurance approvals and got Parker registered in their system. We also found out which tests that Dr. Himes wants done here in New Orleans before we see him. So while this is all going on, Jason and I thought we had a few weeks to get everything together and done based on what they were telling us. Then today happened, and it's almost like a tornado came through!
Dr. Arias' nurse called this morning to let us know that we would need to be admitted to have these tests that Dr. Himes wants done and that they would need to be done by Thursday as Dr. Arias would be out of town after that. After several phone calls and e-mails to coordinate things, it is now confirmed that Wednesday night we will be admitted to CHNOLA and Thursday morning Parker will be having an endoscopy and MRCP of his liver done under anesthesia. Next, Denise from Texas Children's called several times to coordinate Parker's appointment, and while originally she thought we had weeks before he could see us due to his schedule, Dr. Himes had other plans. He opened up a new clinic time frame just for Parker, because he wants to see us a week from today. In SEVEN days!!
So, hopefully by next week we will have lots of answers to our questions. Dr. Himes will be able to tell us, Monday, whether Parker is a candidate for a shunt, which type of shunt he qualifies for, or if he will have to move directly to a liver transplant. Hopefully we will also get answers as to how long we have before any of these actions need to be taken.
So, as always, we are accepting any good vibes, thoughts, prayers, or whatever you're willing to give. As you can imagine, this is all a lot to process, we are having a bit of de ja vu, and things are moving much faster than we expected.
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