I can't even believe I am posting this, but Noah is sick. His nurses noted yesterday that he had diminished lung sounds on the right side but everyone agreed not to worry unless he spiked a temp . . . which he promptly did today.
We did the regular panel of infection labs and took him to our local hospital for a chest x-ray. The x-ray was fine which means the diminished breath sounds are probably due to some kind of airway constriction. We started him on IV steroids which should probably help with that.
He's already on a very powerful IV antibiotic and when Dr. B spoke to Infectious Disease they said to add in another powerful IV antibiotic as well. His labs tell us he's sick but don't really tell us what is making him sick. His liver and his kidneys are really acting up (but I fully anticipate they'll start behaving again once we can get Noah off antibiotics for a while).
It's hard for me to even comprehend but at this point it's going to be difficult to manage Noah even with a three lumen line. We can use two of the three lumens for meds (the other one is constantly infusing TPN and pain meds around the clock). Most of his IV meds are "hand push" meaning it just takes 1-3 minutes each to administer them, but others go on pumps for 30-90 minutes. He now needs 1 antibiotic on a pump every 8 hours, a different one on a pump every 12 hours, slow push steroids every 6 hours, ibuprofen as needed on a pump every 4-6 hours, and diflucan on a pump every day at noon in addition to a pain medicine we always do on a pump every 8 hours. It will be reasonably do-able if he doesn't need much ibuprofen but if he ends up needing it regularly things will get kind of crazy. I don't mean that to complain - it's just that sometimes it seems like only yesterday he was running around and dragging just the one IV pump behind him everywhere he went. It feels like we blinked and went from that to wondering how to manage him with "just" 3 lumens that branch into "just" 9 IV access spots.
Having said all that, he really does look pretty good. He's as white as a sheet but he's sitting up in bed surrounded by Legos and playing on his iPad. He plays with the Legos for a bit, switches to the iPad when he gets tired, then he's back to Legos again. :-)
We don't have a nurse tomorrow so I plan to call hospice and ask if one of the hospice nurses can come out and listen to him at some point. While I can do anything and everything that Noah regularly needs, I'm just plain no good at hearing subtle changes in breathing so I'd feel better if I got some professional ears to tell me how he's doing in that regard.
His new central line site was oozing quite a bit this morning but seems better tonight after a dressing change. We'd had his harness for his wheelchair custom made to accommodate the fact that his central lines always exit his chest in the center or to the right of center - this new line is on the left side of his chest (the only option b/c of the two infected areas on the right side) and the harness really hurt him when we took him out for his x-ray today. He almost never complains about pain but this line is very tender - he cried all through his dressing change (NEVER does that) and was having to push his pain button to manage being in his wheelchair. The line is bleeding a good bit now from the harness rubbing on it. I'm hoping that this will all settle down as the line heals in and in the meantime we'll put some padding under the already-padded harness next time he goes out. If it continues to be a problem we'll need to see what it will take to get a new harness.
HUGE thanks to everyone who shared about the Ride to Give fundraiser!! I'm thrilled to say that this evening donations crossed the half-way mark - we are now at 52%!!!!! I put a little Ride to Give widget in the sidebar to make it easy to get to the site. If you click the widget to go to the site, there are buttons there that make it sooooo easy to post on FB, Twitter, email, or embed a widget on your blog (if I can do it, you know it's not hard LOL). Today is "Two dollar Tuesday" at Ride to Give and if everyone who saw this gave $2 or shared it with one person who gave $2, we'd have our goal met very fast. Again, for those reading this in a blog reader, the direct link is https://fundrazr.com/campaigns/9cn28/ab/61Edl0. We had some people donate more than they bid on our auction, so I was able to contact Ride to Give and tell them to drop the goal amount by another $1K.
Since this hasn't been the most upbeat post ever, here's a little "Noah funny" for you. Noah's never seen Star Wars but apparently Lucas Films is beaming propaganda directly into children's brains because he does have some general idea of what it's all about. He was in a lot pain a few hours after his surgery Friday and by the time the pain was under control, he was pretty loopy. He started telling me how I "never ever ever ever bought him" the one Lego set he's always wanted - the one with "lots of Ninjago guys, 2 catapults, a castle, Bruce Skywalker, Dark Vader, the Deaf Star, and Chawbooka." I have not been able to stop giggling and I absolutely think that Disney or whoever is making the Star Wars movies needs to hire him as a consultant - I mean, seriously, "Bruce Skywalker" sounds waaaaay cooler than "Luke Skywalker," and who WOULDN'T see a movie with some guy named "Chawbooka?" (BTW, for those who might wonder, this amazing Lego set that I "never ever ever bought him" does not exist! Maybe Lego needs to hire him as a consultant as well. ) :-)
Thank you all so much for your prayers for him. I don't know why on earth he's going through such a rough patch right now, but I do know the One who does know and I know that He is good and trustworthy and that He loves Noah. I also know that Noah has a lot of people praying for him and an amazing, loving, brilliant team of doctors who are dedicated to getting him back on track as quickly as possible. I keep telling myself that surely this will be the last "big thing" for a long, long time and I'm looking forward to enjoying the holidays with Noah and with the rest of my sweet family.
I'll update when I know something or if something changes.
Blessings,
Kate
