End of March update

On Tuesday we went back to Cincinnati for what I'll call a "well, shoot" visit. We were all hoping that his lymphatic malformation would stop draining so much from where thy did surgery, but it hasn't. We 're at almost 4 weeks post-op and it's not even slowed down. Well, shoot! We did two rounds of injecting that usually helps shut it down but that didn't happen. The consensus is to take one more stab at it. It's (relative to other options) a lower risk option. (We've still got one vote out on this one, yet..and a rather important one!) Sounds like we'll do this the week of the 11th. They'd have us do it sooner, but we'll be gone all next week. The big change is that they want to start him on a medicine that shows some promise to stop the drainage. First, let me explain why the drainage is such a problem. Apparently lymphatic fluid carries protein, and as he loses the fluid, he's losing protein. He's been losing 4-5 ounces of fluid a day for pretty much the last month. The drainage also contains some blood, which he doesn't have any to give. His blood work wasn't stellar when we left the hospital on the 12th. So....about this medicine. The hospital has been using it occasionally for the last few years with some success, usually in cases of inoperable lymphatic malformations and other vascular issues. It's an immune suppressant, which is the biggest problem with the medicine. It's typically used as one of two or more drugs to supress the immune system in transplant patients. The medicine is a little mysterious in exactly how it works, but at this point it's all we've got. The hope is to use it for a short time (although sometimes it needs to be used for a longer time) and take him off, do another surgery and use it again if it's needed. We're pretty bummed about all of this. The medicine has always been mentioned as a possibility. I'm glad that it was, so this wasn't totally out of nowhere. That said, it still came out of left field. Other than the immune suppression, the side effects are generally tolerable. (Other than immune suppression, geez....They give antibiotics to try to curb bacterial infections, but there's still a risk of viral infections). Of course, this is a small part of the whole story. We have to decide pretty quickly about the medicine but they're giving us a few days. Of course we hope that we get the drainage stopped before we have to make any decisions, but it's not very likely.

We must be home, right?

Of course, when the updates stop, we must be home!

We've had a CRAZY busy week, but yesterday we had nothing to do but errands. SWEET! Since we got home Friday, we've made two more appts in Cincy. One a week from today, and one three weeks from today. Luckily, our new chariot awaits!

All of Micah's stuff plus our Chevy Prizm just wasn't working. The backwards car seat meant I had to sit behind Travis, which meant I just didn't fit. This car is so big!!! We haven't been able to drive it (stupid BMV) but I look forward to loading it up in 12 days when we go on our youth work trip! I'm giggly just thinking about being able to sit with my feet on the floor!

I just heard the American Academy of Pediatrics is recommending kids be backwards for the first TWO years (they better mean til they turn two) or they outgrow their car seat. I thought we were doing good at 18 months! He'll outgrow the seat before he's two, his feet already are almost touching the seat.

Anyways, I hope you're enjoying the spring weather. The flip flops are out, and they aren't going back til Winter! (Sorry Mom, I know you tried to teach me better.)

Home, for now!

So, they let us out yesterday and we got on the road around 2. Got home, only to find no heat in our house, a chilly 55. Really? This week hasn't been wild enough? Luckily, Micah's room has electric heat, and we have a small electric space heater. ENT asked yesterday that we come back Friday to check on how things are going. He was nice enough to call us and check in this morning.
When they pulled the drain (which was no worse than a shot) the site closed up within an hour. Unfortunately that means the fluid is pooling up again. Just in the last few days I've realized how ENDLESS this disease is. I know, in theory the trach should come out eventually but I just can't see how it's going to happen. We're debating when to do the next surgery, the surgeon was aiming for 3-6 months (dead summer). So it'll either have to be mid may or after labor day. It looks like we're going to have some jaw surgery to remove scar tissue that limits the opening of his mouth severely, or at least that's what we think is happening.
And so it goes...

Please, send me home!

"Yeti or not, here I come!"
Found this shirt at target, too cute, and hopefully, very timely!
The plan is to pull his drain tomorrow at noon, and send us home. If by some fit of the bad luck we typically have, they can't get the drain out, they'll have to put him on the surgery wait list and get it out under anesthesia (boo!)
We will plan on coming home tomorrow afternoon and hope it actually happens! And if not, we'll call it another "pulling a micah".
Yeti or not, here I come!

Well, maybe, just maybe...

We have the thoughts from one of the two voting parties in Micah's care. Vote 1 says pull the drain, close the incision and send us home. Vote 2 is still on it's way from India. (LOL) This would be a lot easier if vote 2 wasn't the vote that would do this! There's a million more people that can do it, it's just getting them in the same place we are.

Maybe go home today, maybe tomorrow. If we're here any longer, we're going to the zoo! The weather is supposed to be almost 70 Thursday!

Here's Micah's first pair of flip flops... (Tara, this one's for you!) Aren't they cute?

You know you have a tubie when...

Here's a little snippet of my life as mom to a tube fed kid. One facebook group asked the question...
"You know you're a mom to a tube feeder when..."
- when Caleb was looking at a toy store at a GI doll. My mind went gastrointestinal and it took me a minute to realise it wasn't a doctor doll, but a soldier.
-You see a cute outfit for your baby, and wish it had buttons instead of a zipper.Any one piece outfits that have feet in them, that were given to you.... have a tiny whole cut in the foot/leg.
- When your holding your child and all of a sudden you feel something warm...you think he/she pee'd through their diaper when come to find out its stomach bile coming out of the med port that never stays closed without being taped!
-When you celebrate and praise your child for putting food up to his mouth. (not that he took a bite, but he tried!)
- Who are a mother of a tubie when your child starts screaming and instead of pulling out a teddy bear as a lovely you give him a syringe and he is quiet


Hope you enjoyed.

So, it's showing up as I type here, but not on the page. I don't know what I'm doing wrong! It's working on facebook, so if you can, you can check it out there.