Just like clockwork, Paul is leaving for a business trip and Coleson goes into emergency surgery. Let me first say that Coleson is such a tough dude. We are always surprised when we walk into clinic and they hit us with some bad news since most of the time you wouldn't know it from the way he acts. He had recovered from his last drop in Oxygen sats well, but started to have a dry cough on Saturday. Back up 2 days earlier and he sounded great in clinic and his sats were still high 90s. Fortunately we have a very thorough Dr. and he was not merely satisfied with the fact that he sounded good, he wanted to get to the root cause of all his coughing even though at that time it had disappeared. So Thursday he ordered a more detailed CT scan... which Coleson handled like a pro. Typically little ones don't stay still in the machine, but he did so good. I hadn't heard anything by the weekend so was feeling pretty good that nothing remarkable showed up and Peyton and I enjoyed a nice weekend with our old neighbors and her first best friend, Sammy and Bree. It was a quick visit but we did have time to see Disney's Live Pirates and Princess, courtesy of the RMH on Sunday morning.
So we walked into clinic on Monday at 8:30 and the Dr. told us that the CT scan revealed some fluid around his heart (periocardial effusion) and he ordered an echo for 10:00. Plus late Friday he had gotten results from his lab work that he tested positive for Adno virus (though not a high cell count of it) and we were scheduled to see a pulmonologist at 10:40. Well, we never made it to pulmonology because the echo revealed enough fluid around the heart to schedule immediate surgery (Periocardialcentesis) As a side note, I am going to have to re-write the ABC's of MPS as we've added several new words over the past 90 days.
So we got readmitted to the BMT ward, in the same room as our last stay, and prepared for surgery. In the meantime we met with all kinds of Dr.s & Anesthetists to review the procedures, risks, etc. The cardiac surgeon even said, that he wouldn't know by the way Coleson was jumping and laughing that his heart function was being compromised. So Coleson went into surgery and Paul left for the airport and waited for me to confirm that everything was OK, about an hour later I was able to do. They got 6 ounces of fluid from around his heart and put a drain in there so any additional fluid would be able to drain out. We've gotten another 6 ounces in the past 24 hrs. Just to give you a comparison, it takes 9 hrs of his G-Tube feeds to equal 12 ounces. Needless to say that's a lot of fluid around his little heart! He's been sleeping pretty soundly for the past few hours so not sure if anymore has built up. Usually a lot drains when we move him which we try not to do since he's in quite a bit of pain.
We are in wait and see mode now. We are waiting for the fluid to stop draining, waiting for the adno cultures to come back to determine next steps. It could be as simple as do nothing if adno comes back negative, or if it comes back positive, to take him off his immuno-suppressent meds early (which is what is used to prevent Graft vs. Host disease) and hope his own immune system can fight off the infection, or put him on an IV anti-viral medication which unfortunately can damage the kidneys, sometimes to the point of requiring dialysis. I don't like the sound of either option so am hoping the adno virus cultures come back negative and the earlier labs had gotten contaminated.
Meanwhile, my baby boy needs me and I am trying to just focus on being mommy right now and just holding him so he can be as comfortable as possible. I have been trying to do too much and yesterday scared me back to the reality of this awful disease and the risks associated with it. He needs me right now more than ever as do I him. Please keep him in your hopes and prayers. He needs to feel the love and support from his worldwide family.