It’s been a great 4 days since we posted any updates. We’ve been home this whole time, and while we’ve been to the hospital nearly every day for hours having appts and consultations, we’re still able to come home at the end of the day. Ezra has been looking healthy, happy, and energetic. We know as he goes back for more rounds of chemo his demeanor will change a bit as the chemo weakens his body each stage, but it’s really encouraging to see how well and fast he’s recovered even from this first round.
Today we had a meeting with Dr Mark Kayton from Tampa General (on Davis Island, somebody ask Derek Jeter if we can stay at his place when we’re down there ;). Dr Kayton most likely will be the surgeon removing Ezra’s tumor from his abdomen when it comes to that point in his treatment. This was our first time meeting him, and he seems like a solid, good guy. Everything we’ve heard about him is good, as well, so that’s promising. We may or may not be going in Friday for a relatively minor surgery to insert Ezra’s Broviac line (like an IV, but semi-permanent, year or so or until treatment is done) in his chest. To do this, they make a tiny incision in Ezra’s neck, then insert the line, and tunnel it down through the skin to come out near the center of his chest. There will be nothing visible other than a slight scar on the neck and the line from his chest. You don’t see a line in the neck, although that IS where its connecting to his main vessel. The reason for this operation is his current PICC line method of IV is only good for a few weeks at a time (so we’d be getting new ones in the other arm 8 times at least during the treatment), is more apt to get infection, and more likely to be pulled out accidentally by being jarred, grabbed, etc. Because the Broviac line is tunneled through his actual skin, it is more durable, and much less likely to get infected.
Tomorrow Ezra will be getting his blood work done (which he gets every 3 days now). His platelets have been low since the chemo (a common and expected side effect of chemo), and he’s had to get some infused often. Platelets assist in clotting. If the platelets are STILL low tomorrow (possible), we will put the insertion of the Broviac off until next week so his blood can get back to healthy. If his platelets are good, we will move forward with a morning surgery on Friday to insert his Broviac. They will also then remove the PICC line from his arm, as the Broviac negates its need.
Last night Ezra must have pulled his feeding tube right out of his nose in his sleep, because around 5AM he woke up crying, and when we went in he was soaked in the formula that was being pumped in the line. 😀 We went ahead and left it out until tomorrow when we go in to the dr, and we’ll see if they think he still needs it. He’s been eating very well, but still not taking a bottle (which would be nice, since formula can have so much more calories than food). He IS drinking juice now just fine for the most part, which is also encouraging. Hopefully his eating will be enough now that they don’t think the tube is necessary to stay in – neither of us like it at all, although we’ll do wtvr is necessary to get our baby healthy and happy.
On the financial side, if you didn’t already know, our Medicaid ran out 4 days before Ezra was diagnosed, so we are without insurance. We have applied to be reinstated, and I’m getting various answers depending which hospital/DCF person I talk to about whether it will happen. Our income is now well over the Medicaid limit, but some of them have said when the child has cancer there are different rules. Either way, we’ve also applied for something called KidCare which is a guaranteed acceptance, but it isn’t retroactive and (like everything else) takes 4-8 weeks to process – so anything from when we first went in til around December 1st would be our financial responsibility. And hospitals aren’t cheap. Obviously we’re hoping the Medicaid people will be lenient and let us be approved, as we already had it and it’d be nice to get the retroactive coverage. I literally had a few different insurance pamphlets on my desk the day we brought Ezra into the ER, as I knew we were now out of insurance, and figured a week or two gap in between Medicaid running out and his new insurance kicking in would at most mean I had to pay for a couple pediatric appts out of pocket… boy was I wrong. Somebody buy the movie rights. 😉
So bottom line on finances, which I only bring up because I have had a decent amount of people ask how they can help out financially, is at the moment we’re not sure we need any help. I’d hate to accept anything if I can handle it myself, which is my plan. However, if it winds up we can’t get coverage, hospital bills can very quickly for these two months get quite high, and we may open up some sort of trust for Ezra’s medical bills, etc.
Thanks again for all your prayers, it’s apparent in his demeanor and the attitude around the house it’s helping. Also a huge thanks to MOPS for bringing us meals ever since we got in the hospital. You guys are all incredible.