Our house isn't a pretty site (or smell, for that matter) right now. Micah is sick and not swallowing, so you can imagine how that goes. Apparently whatever they did surgery wise makes his breath STINK as it heals... Oh, good grief he's smelly. REALLY hoping that improves before Christmas. That, or he's channeling his inner Pig-pen from the Peanuts shows.
You know you left the hospital too soon when... (should have been the title). M came down with a cold, it seems. Nothing too crazy, but paired with the respiratory issues that come with upper airway surgery, we had a MESS. About 5 times in the last 24 hours he'd cough or cry, and in about 3 seconds (no kidding), he could barely breathe. Or not breathe at all. It was almost an immediate plug of thick as glue crud in his trach. I think I can go from laying on my mattress on his floor fast asleep to upright in less than a half a second now.
When you have a trach kid, you get used to a degree of trouble breathing. It usually sounds worse than it is (you get some funny looks when you're out and about), but nothing where you have to act immediately. When trach kids get sick, you usually suction dozens of times a day, usually thick goop, but nothing immediate. This was different and a little terrifying (even for me). It's terrifying for the little guy too :( Luckily our super awesome doc was great about emailing us back and gave us some tips that have seemed to help get over the hump of the nasties. No scary episodes for the last 8 hours. And thanks to my LM mama friends, I still have my sanity. It's so nice they speak "Hollandese" (a classic special needs poem.. http://www.our-kids.org/Archives/Holland.html )
So, after seeing every hour of the night last night (and probably the night before that too), I'm sure hoping for better tonight.
So... Micah's doing well and is sleeping soundly in his crib on our favorite hospital wing. We have had 2 nurses we've had before, seen plenty of familiar faces, and even our favorite RT. (That's respiratory therapist). Just hoping to see our favorite PCA tomorrow, but I don't think he usually works weekends. M's on just tylenol for now, and doing great. Morphine works well, but is a rough go with the itching. Hopefully this wonderful-ness continues!
So, the doc had trouble getting his mouth open enough to do the work he needed to. This is not a new problem, although it's not one he's always had. In the process of trying to get his mouth open enough to do anything, 3 teeth popped out. This concerns me on many fronts... Speech, feeding, why his teeth fell out so easy, denistry, maxillofacial surgery.. to name a few. The doc was more than apologetic, and even paid the tooth fairy fees (isn't that hilarious!). I'm just sad my baby lost his first tooth without me, and that we've got years to wait for the new ones. Worse things could have happened, though.
Doc couldn't get in to cut out his tonsils and adenoids, so he used something called coblation. It's a radio frequency that shrinks down tissue. That was the plan for the swelling/LM on the base of his tongue. It's sometimes, but not often used for T&A too. The good news is, less pain, less risk of bleeding. Bad news is it doesn't completely remove the tonsils, but should significantly improve the situation. Apparently his upper airway was just massively swollen. His uvula was multiple sizes too large (and not in the good way, like the Grinch). Doc worked on that as well. Add in the T&A, the LM, the base of tongue and things were very tight. No small wonder swallowing food has been a massive challenge since his last surgery. I'm hoping against hope this will improve his eating.
I think that's the gist of it. Sounds like we gotta find some maxillofacial ppl... Unfortunately, Childrens (a top ranked hospital nationally) doesn't have them. Bummer.
But for now, I'm going to sleep. Because I love sleep. A lot.
We don't just go to Cincinnati anymore... we find all the fun places to stop between here and there!
This trip, Mounds State Park (free admission today, probably thought it was too cold/wet for anyone to go! They were probably right). Trav and I ended up with very squishy feet. Eww...
We had a nice time though. Micah loved the fish tank in the nature center (and the turtles too.. I'm blaming you, Jess).
We're looking at getting zoo tickets for the morning. You can get them free at guest services. Micah would love to just go stare at the fishies for hours, I think. The zoo is open year round, and has a lot of indoor exhibits, so we'll be okay if the other animals aren't out.
MaKenzie is a sweet little girl who lives a few hours away. Her mom and I have been chatting on facebook for many many months. Micah and MaKenzie have the same condition, and it even presents in a very similar way! MaKenzie was a little shy, and Micah was a little crazy, so it made for an interesting afternoon. Not sure what the kids thought of it, but Kelly and I had a great time! I can't wait to hang out with them again, maybe somewhere nicer than McDonalds!
We leave in less than 48 hours, and I'm maybe 30-40 percent packed. Uh oh. I've got M's medical stuff 90% packed, and that's the important part. I'm not psyched up for this surgery... at all. Usually I can get to the point where I'm ready for it, but I'm still waiting this time. I don't know if it's because of the uncertainty of what they're doing/not doing... I'm really hoping to get caught up on sleep before we leave, Lord willing. Tomorrow is phone call day... Call his nurse for his bloodwork numbers and call same day surgery for the details on when he has surgery. Gotta make a trip to the Ped, then we'll be ready to go on Thursday. The sliver of good news is that we're planning on seeing our Cincinnati friends from when the kids were babies. We haven't seen them awhile, so it'll be great! We got Luke Bearowitz this week, can't wait to post pics! Luke is a stuffed bear that carries Micah's story all around the world to other kids that have the same condition. They are called Traveling Awareness Bears. We had a super great fabulous time meeting with the girl bear and her friend this week! Leia (yeah.. Luke and Leia.. get it?) Bearowitz has the story of a little girl that lives about 2 hours away... and we got to hang out on Monday. Pics to come!
Time to really start worrying in overdrive. You'd think I'd be used to this, I think this is something like surgery number 11? I usually start packing about a week and a half before (I know, a little irrational). I have my super long list of what I need to pack for him, but always forget something anyway.... (Which reminds me, I need to order his meds tomorrow...) We're chancing it again and not bringing some of his bulkiest equipment. We've done it before, but only when we know it's only going to be a night. This time there's a chance he could be discharged to "local" and we'll be stuck there... Hoping not. Usually I push that if it's a possibility, but we aren't going to be in the Ronald McDonald House, and I'd rather not be stuck in a hotel room with him for any length of time.
I'm really hoping this one goes smoothly. No reason why it shouldn't. In theory, this should be easy. (Haha). We're planning on being down there til Monday, but if we can go home sooner, we'll just forego the loss of paying for the room...
In the meantime, I think I'm going to nap. I'm too stressed out. (It won't happen, but it's a nice thought!)
Micah is doing fine. He isn't sick, knock on wood. We have to take him to a doc Monday and Wednesday which is exactly what you don't want to do this time of year.... But you gotta do what you gotta do.... (Which reminds me, I need a pre-op physical form. Why didn't they send that?)
If you havcn't noticed before, I have a really short attention span. :)
Feeding therapy is H-E-you-know-what. Dante must have reserved a special level of you-know-what for this. If you have kids, you remember those days where everything was "no" and was thrown or pushed away everytime? That's about everyday in my house. I don't think I can find something that makes me want to jump off a cliff more than feeding my own kid. It's AWFUL. EVERYDAY. On the best days lately you'll get 5 bites... Of barbeque sauce. Dinner tonight was PUDDING. CHOCOLATE PUDDING. NOTHING. Lately he's been spitting out (for lack of a better term) what he's drinking sometimes. My heavens, that's so irritating I could scream. He doesn't mean to, but ughhh.....
Here's what some other trach/g-tube moms said about feeding: "I am constantly telling my friends that I would rather Harrison be g-tube free than trachless Obviously, if I really had a choice, I would take getting rid of the trach bc of the potential for long term damage, but as far as my patience goes, the g-tube drives me crazy. We have taken such gigantic steps backwards in the eating department, and most times I try practicing with harrison, we both end up in tears. "
"We were there for a loooong time. And it sucks. It sucks worse than the trach, worse than carrying a ventilator around......"
"Do you ever just get sick of it? I feel like we are stuck."
Alright, it's official. Since our hotel of choice isn't open to Children's patients anymore, we had to branch out and try a hotel we've not tried before. Now we beg God to keep Micah healthy since we can't get out of the hotel reservation if we need it...
I need to write "The Parents Guide to Hospital Stays" book. If only the RMH was easier to get into. We're not even going to try, since we're only going to hopefully be there Thursday-Monday. Hopefully. Really hard to say... Stupid hotel policy.