September 4, 2013

Day +84: Will Update

Focus on the cute face; not the bad lighting and crappy iPhone picture!


I can't believe we are just a little over two weeks away from the big Day +100 milestone!

Despite his recent hospitalization for a line infection, Will is doing remarkably well! He did have to have his central lines pulled and now has a PICC line in his left arm. He wasn't a huge fan of it at first but, over time, has learned to ignore it!

As far a recovery goes, Will is breezing through the transplant process with the exception of his kidneys. Chemo side effects hit the kidneys really hard around 3-4 months post transplant (which is right now) and Will's kidneys have let us know they aren't too happy about all of the toxic drugs we pumped through them in June.

The main issue right now is his erythropoietin (EPO) level. EPO is a hormone made by the kidneys that signals the bone marrow to make red blood cells. Will's level is basically non-existent which has caused him to still be dependent on red blood cell transfusions. This is a relatively common post-BMT issue and thankfully it is easy to treat! A synthetic hormone (called darbepoietin or darbe for short) can be given weekly to help boost the production of red blood cells. So, for now, Will is getting weekly darbe infusions as well as red blood transfusions as needed. Kate dealt with this issue post transplant as well and it took about 2-3 months of darbe before her kidneys remembered/ relearned the process of making EPO and maintaining a healthy red blood cell level.

Another area we are watching closely is Wills potassium. His potassium levels have been borderline high recently. High potassium is dangerous to the heart which is why it is watched so closely. But, high potassium is also another sign that Will's kidneys just aren't working as well as they were pre-transplant and proves that his kidneys aren't "filtering" as normal.

We are praying that his potassium levels don't get any higher as the treatment to lower his potassium levels is pretty intense. This is a semi common post transplant issue but I would love to avoid adding meds every 6 hours and re-starting fluids (and adding a specialized fluid called bi-carb).

In good news Will has been cleared for mask-free outside time! So he can now play in the back yard, on the porch, and go on walks in the neighborhood without his big mask on!

Despite these kidney setbacks, we are so amazed by Will's progress over the past 2.5 months! His energy levels are back to normal, he is hitting new milestones (learning new words daily), and truly thriving! Now we just hope and pray we can get through cold and flu season without any major setbacks!

As always, thank you for the continued thoughts and prayers for our sweet Will!

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