Thursday, March 13, 2014

Clinics, Biopsies, and SuperMax

Hey all!

It has been another busy week with little time to spare, so we have found it difficult to find time to update everyone before now.

On Tuesday morning, Max went in for his first cardiac catheterization and biopsy to check his heart function and test the muscle tissue for any signs of rejection (he will have many of these throughout his life, and anywhere between 3-6 this year alone). The process is relatively simple and involves inserting a catheter, which is a thin and flexible tube used for a variety of purposes, into the internal jugular vein and down into the various chambers of the heart.

Just like this. Only on a much, much smaller scale.

This probe checks heart function, internal pressures, and is also used to take small pieces of the organ to send off to the labs for examination. These tests check specific levels and can determine if the body is beginning to develop any type of cellular immunity--in the form of T cells, also known as cytotoxic T lymphocytes (smart cells)--or if any antibodies are present in the form of observable B cells (dumb cells). Even though there are various outward signs of rejection, a biopsy can often detect these changes long before any other symptoms arise, thus making it easier to battle any potential rejection of the foreign organ.

Wrong kind of "dumb cell."
Dad jokes.

While the physicians had a direct line into Max's heart, PCH's Doctor of Electrophysiology used this as an opportunity to test the electrical patterns of the organ since Max has had issues here in the past. This doctor attempted to stimulate the heart in such a way that could elicit an arrhythmia or any form of electrically-related tachycardia. Luckily, Max's heart behaved normally and did not respond to this stimuli.

Pictured here: a scientifically accurate depiction of Max's heart.

After both the cardiac cath and electrical study were completed, Max was released back into the CVICU for monitoring since these procedures are not free from risk and complications. This was a nice opportunity to see a number of our former nurses and for them to see how well Max was doing. Our transplant coordinator and primary doctor wanted to wait for the results of Max's earlier blood tests and initial biopsy results so they could potentially remove the RA line while Max was admitted to the hospital if everything looked acceptable.

After what seemed like days back in the hospital--it was NOT fun to be back at all, especially after having to check in at 5am after a sleepless night with Max--we received the preliminary results back from the lab.

Drum roll please...

Not only had Max's magnesium levels risen since our last appointment last Thursday, but his biopsy showed that he has absolutely no signs of rejection whatsoever; he scored 0 for 0 on his lab test. This was such an incredible and relieving discovery since this was the next big hurdle we had to get over. So, with the mag levels steadily increasing with just oral meds and no signs of rejection, Max was cleared to have his right atrial line removed, meaning that we would no longer be responsible for flushing this at home (terrifying) and we could get rid of this potential source of infection and discomfort for Max. Removing the line was a mini-procedure in itself, since the line had been in there for a month and has a small cuff beneath the skin to hold it in place, but once again, Max held strong and came through with flying colors.

We were back at the hospital today for a clinic visit and to make sure Max was doing well after the multiple procedures on Tuesday. The boy was looking great, gaining weight, and doing what babies are suppose to do: eating, sleeping, pooping, and being awesome. Since he had his line removed on Tuesday and no longer has a way for the team to gather noninvasive lab draws, Max had to have his first poke today. Since one of the best veins is in his head, they took the draw from here. Yes, his head. Even his cardiologist winced when hearing about this, so you are not alone.

But, once again, Max is a tough baby and was fine as soon as the draw was completed. His blood even coagulated very quickly despite being on mild blood thinners; what a badass kid!

Everything at home has been amazing. We have been able to spend nearly every waking moment with him and have started to develop our own family routine. It has been amazing to be able to feel like a normal family for the first time ever and to have many little moments free from the hospital, heart transplants, medications, outside germs, rejection, and knowing that Max is sick. We have been cherishing the small moments and every day is new and a step in the right direction.

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