Saturday, June 8, 2013

Outpatient to Inpatient - once again

Today started out with ECP and Xander not feeling so well. He has been retaining water and not passing all of the fluids that he receives overnight. During ECP he was not urinating at a normal rate for the amount of fluids he had been given. This is an indication of an issue. We don't want the bladder to stop flushing, so they decided to admit him to 7 East again to get his fluid levels evened out. Just within in the last 8 hours he has made big improvements and commented that his bladder feels better already.

I really need to cut to the chase here, because a major breakthrough has happened. We have advocated and convinced (with real data) that Xander will undergo Hyperbaric Oxygen Therapy with Dr. Levine's blessing! For all of you that have followed Xander's story closely, you know how important this has been in Xander's overall care from his last transplant to this one. He has had over 250 treatments! So, we start tomorrow, with the docs approval. This will be so outstanding! Yay for Dr. Levine, super duper decision for the health of the patient, to say the least. We have consulted with multiple HBOT Doctors and will dive him at 3.0 ATA for 1.5 hours. This is a therapeutic treatment for the bladder. Xander is super pleased about this exciting news and we couldn't be more thankful for this burden to be lifted. Thank you all for your prayers.

In regards to his infectious disease update; he has a CMV level of 5,500. This is still very low (normal for active CMV infection is 150,000). At this point, they are not pursuing another anti viral (thank goodness). The BK Virus has not come back yet, but this is highly likely.

Dr. Levine is moving forward on 3 of the ideas that we brought to the table:

1. Administer IVIG again
3. Reducing Prednisone dose to 30mg (WOOT!)

There is no way for the Virus' to go away until the prednisone is reduced significantly and this has to be tapered very gradually. We believe based on research that the combination of ECP and HBOT could be his answer to the proper immune suppression without a lot of side effects. The prednisone makes him pretty nasty.

Of course, couldn't sign off without a stool update - yes, today folks was the first solid stool in weeks. Way to go Xan! We even have a movie this time (but I'll refrain from posting that!)  He is basically released on the diet, although we need to keep it simple and healthy fats only. We have a lot of experience in this area, so it's not too difficult, just time consuming.

So, great news that he is feeling better. We'll hope for a speedy exit.

Peace and love to all of Xander's followers,


P.S. In hindsight it looks like the universe aligned just perfectly for Xander to be able to attend the 3rd grade play! WOW!


  1. Wow! Awesome news on the HBOT! We are so grateful for that! And we are happy that you are starting to feel better! We're so lucky we got to see you while you were out of the hospital, and it sounds like you have a great plan in place to get you back out again soon.


    The Lowensteins

  2. I'm so glad that he was able to come to the play!

  3. Yea!! great news on the HBOT and so good to see you at the play Xan...:) We will see you soon!