Wednesday, March 30, 2011
Tuesday, March 22, 2011
Wednesday, March 16, 2011
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...
Monday, March 14, 2011
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!
Saturday, March 12, 2011
"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.
When you spend some time here, you realize how good you have it. I was talking to another mom from New Jersey. She had one week to pack herself and one of her twin one year old girls and relocate to Cincinnati... for the next YEAR. Another mom has been here since before Micah was born. I don't think anyone realizes how many families have to completely uproot their life to take care of their childs medical needs. Crazy.
On a lighter note, Micah was having fun playing peek a boo last night at the hospital. For some reason it's not posting... let me work on that. Consider it anticipation.
Friday, March 11, 2011
We went to the playroom, and Micah tore up the place like the little boy he is. There was a little 2 1/2 year old girl that was so patient when Micah kept taking her crayons. He'd take them, we'd give them back, she'd put them all back in a row... over and over again!
If you'd say a prayer for our friend Cincinnati Ella. We were hoping to see them, just not in this context. They're admitting her to watch her for a respiratory bug.
Thursday, March 10, 2011
There has been miscommunication about the plans for tomorrow, but here's the scoop, all nicely ironed out for you. They're going to redo the sclero tomorrow in Micah's room. Last time due to a drain size change, it probably didn't stay in like it should. I won't go into the drama of the afternoon... For now, Micah doesn't have an IV (first time in a week) Yay! He may need one tomorrow, but we'll cross that bridge then. The plan is to do the sclero tomorrow, try to leave it in til Saturday, then discharge us to the RMH til at least Monday, where we'll see them in outpatient.
Well, I can officially say we'll be here long enough to get mail. Ronald McDonald House of Cincinnati C/O Travis and Brittany Hartman, Room 68 350 Erkenbrecher Ave. Cincinnati, OH 45229 If it goes out tomorrow, it should get here. I'm not sure how much longer we'll be here than Monday... We'll see...
We got to go to the playroom, and today they were doing music therapy. That was fun!
In my opinion (I gotta be careful, I know some of his doctors have his blog)... there are two decisions to be made. Can he be on oral antibiotics or does it have to be IV? Is a PICC line worth it to get us out of here? A nurse would probably have to come out to the RMH to check on it, which happens frequently over there. (His peripheral is dying fast, so we need to make a decision..A peripheral only lasts a few days, a PICC can last a lot longer.) He needs antibiotics every 6 hours. If it has to be that he stays here, that's fine, let's just decide that instead of pushing it back another day.
I know, I know... impatient much?
Wednesday, March 9, 2011
Tuesday, March 8, 2011
Micah seems to be doing well. He's only on tylenol and is sleeping... like a baby. :) We'll see how he acts the rest of the day. I'm hoping since he wasn't under anesthesia for more than 45 minutes he won't be too out of it. He woke up much more quickly (and happily) this time than most. Hooray!
So, I look over to see Micah doing this: (It's too bad he got interrupted). This came out of nowhere... I'll narrate:
"one fell off and bumped his head... mama called the doctor and the doctor said.. no more monkeys jumping on the bed."
If this doesn't make you smile, you must need to go back to bed or something!
He went down about 10:45, they blocked out an hour and 5o minutes. The poor kid was just starting to act like himself.
Monday, March 7, 2011
The difference is absolutely crazy. I can't get a a pic because there is a bunch of gauze in a mesh netting around his neck... but wow. It's a huge difference. Since it apparently wasn't draining like it should-you could have fooled me- they may have to do sclero to stop it. Dr. P just peeked his head in to get a baseline, and we'll decide tomorrow. Unfortunately Dr. E is leaving for a peds ENT thing in India tomorrow, and Dr. P is going to be gone Wed/Th. Micah needs to get it together soon!
Oh... gross, I really just can't get over how gross that was.
The stitches need to come out Thursday, probably. Dr. E said there's a small chance we'll still be here in the hospital, but hopefully not. It looks less likely we'll get out tomorrow.
Sunday, March 6, 2011
Hand sanitizer, anyone? I think we're making a compulsive little boy :) It makes me laugh, though, everytime. This was the night before surgery in our little hotel room.
They've got soft little elbow straighteners on, so he can grab any number of things he shouldn't have. The surgeon gave us a call and said he'd come by in the morning (thank you!) and that we should get the pressure dressings changed then. The drainage has slowed considerably, but that's always subject to change. When I asked about when we were getting out of here he gave a little chuckle. He knows how antsy I am. Unfortuately it's one of those things you don't know til you know. The drainage needs to slow to a minumum and everything needs to look good underneath the dressings. We also found out he can't get the stitches out til a week after surgery. I think we'll just end up staying down here til then. Not a lot of sense hauling him in this state back to Indiana Tuesday (or so) to bring him back Thursday. We'll see. He can get morphine every hour, but he only seems to need it every 3-4 hours, which is good.
Micah's a tough little cookie, and he's starting to win over the nurses, even while he's not fully awake yet!
To the person who thinks changing the trash (in his room) at 4 am is a wise idea... Fire your supervisor.
Once all the rounding is done, I'm going to bed somewhere. Anywhere. It's the weekend though, so that could be 8am or 10 am.
Saturday, March 5, 2011
He's technically been off sedatives since about dinnertime, but he's still pretty groggy. I'm just hoping he doesn't wake up thinking 3am is playtime. Oh, nurses! :)
I (Brittany) am at the hospital tonight, and hopefully can get some sleep. I apparently need some sleep, because I had this conversation with myself when I was in Micah's room. "Oh no, where's my cell phone? What if something happens with Micah and I need to call 911?"
Oh dear. It's time for bed, huh?
That pretty well sums up the afternoon. It takes like 9-12 hours to get him off the sedative, of which he's not happy about. He's so "thrashy" (another new word) that he's causing more bleeding, which put the un-sedating process on hold for a good two hours. The plan is to let him wake up fully and hope he'll be more agreeable to leave his head/neck alone. He may be more agreeable, but that doesn't mean he won't be equally as ornery. We'll see.
We're trying to figure out how best to get him from half sedated to awake, without giving him too much meds that it'll just sedate him further, but still manage his pain. He clearly doesn't like this half awake, half asleep thing (who would?) so it's hard to tell that from straight pain. My head is spinning because the nurses want our opinion, but what do I know? (apparently more than many families, she said).
When I switched out someone to sit in his room (only two at a time!) they were talking about dropping his sedative from half a dose to a quarter of a dose. He's been opening his eyes from time to time, so he's already waking up a little.
I can't help but feel clueless, like the only thing I know is what happened a minute ago (but don't ask me what happened an hour ago, it all blurs together!) All this and I even got some sleep last night! Sheesh!
Micah had a good night. He looks "froggered" right now, with his little arms sprawled out everywhere. :)
Friday, March 4, 2011
Thursday, March 3, 2011
The doctor was able to remove a large part of the mass, about half (by time to remove, not necessarily size) in his opinion. They didn't do some of the area under his chin, because it would have required another incision, and another hour. They didn't do by his temple, because that would have been another 3 hours. So, they did the area in between. The doc felt like they got 90 percent of what was in that area. The rest will have to wait. In the process, there was damage to a large artery behind his ear. He lost enough blood to require 200cc (about 7oz) of blood. The artery (or blood vessel, I don't remember) could potentially start bleeding again, so they decided to move him to the ICU. The good news was the LM wasn't real seepy, so it shouldn't take as long to drain. Doc thought might be out by Sunday, as opposed to another few days.
Now, they just need to let me see my child.
The OR is booked for a whopping 380 minutes.. 6 hours, 20 minutes. They'll do a scope first then start on surgery. There was a change in plans, and they are going to start on his chin first, and work up. Different risks, different benefits.