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Its been a long couple of days..waiting for answers.
Dr H came by a couple of days ago and said that they heard from Pittsburgh and that the dr's up there needed to discuss Zach and decide whether or not they still wanted to transplant him. All of his mito tests so far have came back negative, but with his biopsy showing some sort of myopathy they were worried.

This afternoon, Dr H emailed me with a wonderful email from the transplant surgeon in Pittsburgh saying that they are bringing Zach up there, they are just waiting on insurance approval!!

Zach is so lucky to have such wonderful dr's that care about him so much. Dr Y is so sweet and told me yesterday that even if Pittsburgh didn't want him, he still does...aww, love him!! His entire office and him care so much for my boy. And here, he has the best GI docs..Dr H is great and even the ones we don't see often, want to make sure he is comfortable. His surgeon is awesome, Dr P is so caring...he is really worried about Zach and wants him transplanted asap.

And on the pain note...we are working on that. The pain team came by yesterday and put Zach on methadone. They started with a bolus of methadone then put him on an infusion to try to find the right dose. They also increased his dilaudid frequency to every hour as needed.

Today, they discussed what would be best to go home on. He is thinking about sending him home on a PCA pump with a daily infusion of dilaudid and a button with the ability to give extra dilaudid boluses as needed for breakthrough pain.

They think he definitely needs to be on an infusion of meds to get the greatest results and then the extra meds for extra pain.

We will remain inpatient for the weekend at least. Dr L, his neurologist will be coming by on Monday to see him again. He is trembling at times, and she can give us her opinion on his biopsy and other symptoms. And hopefully by then, the pain team will have figured out the best home meds.

And then on Wednesday all of his dr's are getting together to discuss Zach and hopefully come up with some good ideas.

We are having some good days now...he played really well today. Him and his favorite nurse, Ryanne laughed and played today. They squirted each other with water syringes and got each other in trouble. He is so lucky to have a nurse that loves him so much and goes far above her "nurse" duty to care for him. 

"Lator Gator" Ryanne!