Monday, January 30, 2017

Week 180: Ever vigilent

We have arrived at a day that I have been awaiting a long time: Lemon has been completely off antibiotics for two full weeks, for the first time since September. I contacted our nurse practitioner today and it's official, we're off hospitalization watch. If Lemon gets sick again, our intervention plan will be another round of Cayston. I'm told that we have a refill on our existing prescription, so tomorrow Papa Bear and I will get things in motion to get that refill into our hands so that we have it when we need it. We are currently accepting bets on how many hours of our time it will take to get everything in place to receive the refill. I'm so glad that we've finally found something that works for Lemon, after years of mucking around with oral antibiotics that, if I really think back on it, probably never actually cured him of anything in his life. But, it does drive home the reality that when he gets sick, we're signed up for a minimum of a month of three treatments a day--we can't even pretend anymore that just pushing another medicine through his tube twice a day will do anything. Still, if it keeps us out of the hospital and away from PICC lines and IV infusions, the extra time and energy of the inhaled antibiotic is 100% worth it.

On Friday, I took Lemon to see his regular pediatrician, who wants to follow him every 6 months. Honestly, I thought about cancelling the visit, because Lemon is actually well at the moment and I wasn't sure it was worth the infection risk to even bring him to a pediatrician's office at this time of year. But, I had an important agenda item: I needed someone with an MD to fill out the prior authorization form for our insurance company so that we can get our second opinion in Milwaukee. So, we went, and I'm really glad that we did. Lemon and Lime's new pediatrician is a genuinely kind, caring person. I immediately got more traction with him on the idea of a second opinion than I did with our clinic. The clinic's line has always been, "Oh, yes, that's a great idea, we really encourage that." Which has not, since I raised the idea, turned into a shred of actual support in terms of getting there. The pediatrician, on the other hand, upon hearing about the situation, said, "Oh yes. You need this. Let me take your copy of the form and the names of the doctors there." So, with any luck, we're one incremental step closer.

The other good thing about the visit is that we got the pediatrician to put some orders for bloodwork in the system for Lemon. As you may remember, back when he had the PICC in October, we drew labs and he had really high values for a number of liver enzymes. Our nurse practitioner attributed that to the fact that he was sick, and said we'd retest in March. But, since Lemon is healthy now, and who the heck knows what will be happening in March, I got the orders put in now so that I can take Lemon over to the hospital at our leisure to get blood draw, probably later this week. It's an extra trip to the hospital with all the attendant risks, but I really want to see what those numbers are when he's well. He's also been a little pale lately, even for his usual pasty white self, so we're also going to do a blood count and see if there's anything to be seen there or if it's just the natural pallor of a Wisconsin winter.

The one piece of bad news that we got at the visit is that Lemon has actually lost a pound over the last month. I think we'd become a little complacent about nutrition since his last clinic visit, because everything was looking so good--his vitamin levels were all in the normal range, and he was gaining weight like a champ. I think we mentally checked the box in our heads that said "Nutrition plan working." And, of course, as soon as you stop paying attention, things change. Lemon hasn't been eating much at all these last few weeks, and he's been feeling great so he's been EXTREMELY active. And that has had its inevitable result. So, we're going to try increasing his overnight feed from 3 to 3.5 cartons of formula and see where that puts us in a month or so. I feel like we're due for a recalibration of his nutrition plan anyhow--it's been nearly a year now since we had the feeding tube placed, and he's grown so much since then. So, now  that we (however briefly) have pulmonary under control, maybe we can focus our next clinic visit on that.

Oh, right, one more moment of hilarity from the pediatrician visit. The doctor checked Lemon's g-tube site and then asked me who was in charge of it. I gave him kind of a blank look. He clarified, "You know, which doctor is following up on it and doing the tube changes?" I had to bite my tongue not to laugh, and he did his best to hide his shock and dismay when I said that it was my understanding that I was in charge of it, and no medical person has looked at it or changed the tube since surgery decided they were done with us.

Out there in the world beyond this blog, it has been a big week for our country. I don't want you to think that I'm unaware or disengaged. But, I have made an editorial decision that this is a blog about the life of our family as it unfolds. Writing these weekly updates is therapeutic, relaxing, and a chance for me to try to view what's happening in our lives at arm's length. Honestly, at the current moment, it's a bit of an escape for me too, to take an hour and just think about what's happened in these four walls and look at all the cute pictures from the week. I hope that reading it is and will remain an escape for you, and that it will renew your energy and your commitment to fight for the causes that you hold dear.

1 comment:

  1. Oh Dena. You have such a gift for writing. I think you should write a book. I know I would read it!
    Great job! Please tell Ez Julie says HI!!