Hello to all of Joel's buddies. It was an eventful day in Tacoma.
We showed up at Dr. Ricker's office this morning 45 minutes late, after being stuck in accident traffic & me not getting coffee....I kept my spirits high knowing that our appointment would hold good news, and it did. Joel got his passy-muir. For those of you that don't already know, trachs provide an airway that bypasses the vocal cords. No sound. No crying, no giggling, no cute baby squeals. It sucks at times, but the trach saved my baby's life, so I pick my battles. The passy-muir is a one-way valve. It allows air to go in through the trach, but not out. The expiratory air is forced to go around the trach and out the mouth...which allows vocal cord movement & sound. I got to hear my son have a "true cry" for the first time since being trached. It was truly amazing, and I fought back tears the whole time. A friend of mine gave me a passy-muir as a symbol of hope shortly after Joel was trached, and I've held onto it knowing that our day would come. And it has. Unfortunately, Joel was LIVID with it on, and his sats dropped to the 80's in seconds, so it will take some practice.
Dietary didn't have good news. Joel isn't gaining weight. He'll be 6 months old on Sunday, and he's only 14 lbs. We're not sure if it's the "exercise" of breathing on his own with his increasing sprints, or a malabsorbtion problem. He's pooping waaaaay more than he's supposed to, so we changed his formula to Elecare, which breaks down the protein even more. Joel's albumin & Iron levels are continuing to be low also, so they wanted those checked when we went down to Hematology.
Down at Hematology, the lingering question was about the blood thinners...Joel's blood clot problem is finished. The genetic testing has come back with positive results. He isn't predisposed to clotting. Something about his anti-coagulants was out of whack after his heart surgery, which caused him to go into DIC. It is nothing more than that, meaning he doesn't have to be on blood thinners for the rest of his life, only when his body is in "trauma" would we potentially run into a problem. However, Joel has a plastic porta-cath under his skin, which would cause a body to create clots, so he has to be on blood thinners until the porta-cath comes out. The plan upon arrival was to speak with Cardiology & Pulmonology as to the importance of keeping the portacath in. The issue here is this: The portacath is needed for an access site. It's Joel's only open site for a central line, as he's clotted off all of the others. If he gets into an emergent situation and needed central line access, his portacath would be necessary. The question being, Is Joel still in a risky state to keep it in, or can we take it out? This entire debate was botched quickly after, when trying to draw labs. On September 1st, Joel decreased from blood thinners 2x's a day to once a day. Sometime between then and now, he clotted off his porta-cath. It wouldn't draw anything despite positioning changes. It's a scary thought, but I'm taking it as a sign that Joel's ready to have it out. Let's hope so. We'll go in to I.R. sometime soon and figure out the details; maybe he's outgrown it, maybe it's moved around and can't be accessed as-is. Unsure just yet. God's got it covered.