I'm so excited to share some great test results with you! We called today and got Brady's HVA and VMA levels back (urine marker for NB). His HVA is 17.9 (it was 151 back in Feb) and his VMA is 14.3 (it was 87.1 in Feb)!!! Both levels are well within normal limits. This is fantastic news and tells us that obviously there is far less NB in Brady's body. What remains is so small that it isn't even registering in his urine. This is another small step of reassurance for us. We will repeat this test in 3 weeks.
On to the Broviac...it doesn't look good. The site is red and irritated and it appears that there may be some discharge. Matt called this morning and we didn't hear back, so I called at 3pm. The NP said that we should bring him into the clinic to have it swabbed and tested for infection (which will take days!). I told her that we have an appt with our pediatrician tomorrow and that I will have her look at it and give us her opinion. I'm hoping to have her as an ally in advocating for removing it ASAP. I think it is ridiculous to speculate about whether or not it is infected. Let's assume it is and get it out now! Why take off the dressing, swab the site, clean the site, and apply another dressing while we wait for test results! It just seems insane to do that at this point. The NP is calling the surgical NP tomorrow to see if there is a way to get it out sooner. Frustrating...
The scans and reports are on their way to Sloan today. I sent them out myself and will follow up with my new contact there on Tuesday morning.
Brady had another great day at PT. He bops around the PT room, walking the whole time. He is becoming so bossy these days, telling us just what he wants to do when he wants to do it! He is interacting well with Linda the new PT and we are both so amazed at what he can do. Certainly his crawling days are well behind him. God is so good! I definitely think it is time for another Brady walking video to be posted on the blog. I'll get Matt to work on it over the weekend. I need to share my little miracle with all of you!