Trick or Treat pt 2

This doctor makes housecalls... if he were only tall enough to ring the doorbell :)

Doctor Micah, making his evening rounds :)

Last stop, grandma and grandpa's house.

Paging Doctor Micah

Our handsome little doctor in training :)He's learned from the best :)

This, on the other hand, he probably picked up with mommy watching too much "House". :)

Didn't know what to put as his "Specialty" for his ID tag, thought adorable would be fitting!

I'll get more pics up later, blogger is being a pain!

Getting desperate!

So, the promised post about Micah's feeding schedule. Most of you can just skip this... (this is what most people call oversharing, I call it desperation)

For the last month or so, Micah can rarely hold down his morning feeding. Just this morning, I gave him 15 mL (1/2 ounce) of blended food/pediasure, and up it came within 5 minutes. Sometimes we can't get past his AM meds without puking.

This is his current feeding schedule.

9pm-5:30 am- 13 oz pediasure, 2 H20, multivitamin
8:00- Morning meds if he has them with 1 oz water
8:30 am- (Attempt) 4 oz pediasure, 1/2 oz water ("bolus" at fastest 15 ml every 15 min)
11:30am- 6 oz pediasure, 1 H20 (bolus 30-45 mL every 15 min)
3:00pm- 4 oz pediasure, 1 H20 (bolus 45 every 15)
6:00pm- 6 oz pediasure, 1 H20 (bolus 45 every 15)

He gets minimal food/drink by mouth, at max an ounce of each a day.

We've tried pediasure, blended food (although that usually gets mixed with 1/3 pediasure to thin out). Sometimes he even pukes with water in the morning. Occasionally he has trouble with other feedings, but about 75% of the time it's the first one. He has a BM a day, usually late morning.

I'm baffled as to why he barely tolerate anything in the morning. As you can see by our feeding schedule, we're packed the the max with feedings just to get them in. I've debated going continuous in the AM, but he doesn't have a pump he can carry and he's WAY too active to sit still for over an hour.

I'm thinking it's not a motility issue since it doesn't take anything to make him puke. I'm wondering if it has to do with his nissen... Maybe something is pooling up on top of it overnight. Sometimes the puking is caused by coughing, sometimes by suctioning, sometimes by nothing at all. Or maybe it's allergies, and he has too much going on 'junk' wise in the morning.

The puking has come and gone his whole life, but not with reason. He just came off 7 weeks straight of Keflex because of the drain. I'm sure that's left his system beat. We're doing probiotics to try to negate some of those problems.

Any ideas?

Yuck.

So far, the only day our surgeon has open THIS YEAR is December 16th. We took it, but nervously. Mr. Micah, as we all know, is the king of pulling stunts. And of course, with LM you don't know what you're going to find until you get in there. The doc has a few things in mind, but won't know for sure til he gets in. He thinks it'll be a 2-3 day max stay, so we should be okay if it's double that (which we've been known to you). Looks like potentially tonsils and adenoids, coblation (a way to remove LM tissue) on the base of his tongue (the back part) and a scope. There's so much to do, it's a veritable laundry list of things that need done in there. We usually just sign off for all sorts of things, and they'll call out with what they want to do when they know.

Not sure what the plan is between then and now, (7 weeks, 2 days). I assume we'll be down there for IVIG at least once between now and then. In theory we shouldn't be having the catastrophic drops because he's not draining. It would be super to only have to make one trip in the next two months... I can't even imagine! That being said, I'm not getting my hopes up.

Looking ahead... trying not to look too far ahead.

We've got a time frame for the next round, nothing pinned down yet. Looks like it's a scope, with potential for tonsils and adenoids and what he calls a "tongue base reduction". Probably should figure out what that entails, but I can take a guess. Sounds awful though. Still hashing out whether the t ANd A (micAH LOVES pLAYING WITh the caps lock buttoN, IT LIGHTS UP WHEN IT's on). SORRY, whether the T &A will require a lengthy stay in Cincinnati. I've heard some airway families have to stay in town for a week and a half due to the bleeding risk (and no one would want to touch our kids airway). Obviously, that doesn't seem like the norm, but I have no idea what is normal anymore.

I gotta get a post up soon about Micah's feeding schedule, because I need some of you special needs mama's to HELP!

For a friend :)

This is for a friend who needs a smile, but I'll let you all see :)

The biggest problem... isn't that big!

We're at a.... dare I say it???... a slow point with Micah's treatment. We got the go ahead to stop 3 medicines yesterday (that's 7 less doses a day), switch one med from twice a day to once (that's 8 less)... We're seriously only left with 4 doses half the week and 2.....2!!!! the other half of the week. This morning, it took me like 5 minutes to realize he doesn't have morning meds this morning!

The drain is out now, so we dont have that antibiotic irritating his stomach, and let me tell you, 7 weeks of a pretty potent antibiotic... UGH!!! Not to mention the one he's been on for most of the last 6 months... I hear parents so tentative to give abx for an ear infection or something... and I can't help but think that I wish we had that luxury to worry about that.

He's off the immune suppressant, the drain is out, and his iGG is fine (for now). What? My kid has an immune system (well, maybe not quite, but soon?!) Oh wait, it's October. Doesn't matter because he doesn't get a free pass out as long as he has a trach, in my humble opinion. The (sort of) good news is that he gets synagis again this year, it's sort of like a vaccine against RSV. UNFORTUNATELY, it's monthly shots for probably the next 6 months. This mama just about had a breakdown when I heard that he qualified again. It's a torturous shot (he was upset for about 5 seconds about a flu shot, this he'll scream for), and he knows by now what's coming. And we just got past weekly bloodwork/sticks. *bangs head against the wall* Poor kid... poor mama and papa. I'm just sick of it. Sick of bringing my kid in for torturing, knowing all the while we don't have a choice. RSV can be devastating for a trach kid. Most kids you only worry about for the first year, but it's constant with a trach kid. RSV is just a specific type of cold, nothing an adult would ever have a clue about having.

He's got his yearly evaluation for First Steps this morning. It's kind of silly because he qualifies for OT, PT and Speech just because of his medical conditions, so why bother? We don't ask for the 4th type of therapy anyway! They'll probably try to convince me he doesn't need PT... Good luck with that one!

Which leaves us with our two "big" problems, his puking and his swelling. I'm hoping somehow the puking is related to all the morning meds he was on (two abx and advil). Unfortunately I know I'm wrong, LOL. In the morning the kid just can't tolerate food. We used to be able to get about 5 oz in an hour. Now we're at 4 ounces in about an hour and a half, and he's still trying to throw up (and being successful if we don't get it all back out of his stomach in time). It's baffling. We've had to increase his feedings from 3 to 4 already to accomodate the increase in volume he needs to grow.

Okay, I'm being incredibly boring to about 90 percent of you who don't live in this world. Long story short, he's got swelling in his face that leaves his eye swollen shut for the first half the day, but it goes down which says it may not be LM, just tissue swelling... but why?

That's enough of a novel, I'd say.

Don't worry, it's not slowing him down (at all)

Super fun time with super fun daddy :)

This pretty well sums it up! And... he's off!!!

Wow, Mom, your ear sure is interesting!

Two steps back?

Rough morning. Lately he's had issues keeping his first feeding of the morning down. It could be any number of issues, although probably nothing alarming. We're tweaking one thing at a time trying to figure out the problem.
Until... this morning I get a text from the nurse (it was my errand morning) that there's milk coming out of his trach.
WHAT!?!?!
A basic anatomy lesson... food goes down (and up) your esophagus, not your trachea. He aspirated everything as a baby, but has been cleared for everything for a long time. No signs of aspiration since he was an infant. Milk coming out of his trach... Dang. Of course I wasn't here to see it, but I have to trust she was right.
The conservative approach would say "do a swallow study, don't give him anything by mouth until we know what's going on" . The opposite would be to say (not that one is better than the other) "given his history of not aspirating in a long time, we'll call it a fluke and go back to what you were doing."
So, I think we're going to try to keep the puking to the minimum by slowing down feedings and watch any by mouth feedings carefully. He's not been doing well with them anyway since surgery. He's holding food in his mouth, which can be a sign of other problems.
Hopefully this random aspiration is a fluke. I'm concerned it was enough to actually cough out of his trach.... Not just a little suctioned out of his trach.
(Didn't I just say I thought things were going to slow down? I REALLY need to stop saying things like that!)

Well, the drain is out... at least?!

Well, the drain wasn't work, and we haven't been able to drain anything from around the drain, so doc asked if Travis would feel comfortable taking the drain out!
I'm starting to wonder if Travis has a second career coming! Mind you, this drain is supposed to be stitched in. Luckily, as we played with a little, we found out it wasn't stitched in anymore, and out it pulled! It came out really easy. He's only gone something like 3 days without a drain in the last 7 weeks! Once the site closes, the kid can finally take a decent bath and get a haircut!!! (And boy, let me tell you he needs both!)
He's still pretty swollen around his eye. Hoping a good long course of advil will take it down (it doesn't seem to be cystic swelling, really).
Looks like we may not have to be down in Cincy in the next week! It's been 4 days and we haven't even had the conversation about returning, whoa!!!

Not much to update...

We're thankful Micah's leg has gotten back to normal without any intervention. I couldn't even imagine if it were broken or something... He'd be so ticked!!!
No luck getting Micah's swelling under control. We're trying a regimen of advil to bring down the "inflammation" type swelling. We've tried to drain it around the drain, but still no luck even after the doc working on it Thursday. Sad day. As the day progresses he can see out of his eye somewhat, but not usually until the afternoon. Doc wants to watch and wait for awhile, since we've been intervening so much in the last few weeks. I understand, but it's hard. Maybe, though, that buys us two or three weeks from traveling though, which would be a nice change of pace.
I can't remember if I put this last time, but I've requested some time off until the next round of surgery/procedures. Maybe at least a month when this gets sorted out. It's cold and flu season now, which isn't a great time to be out. Don't want to wait too long though, since the weather will turn south in December, probably.

Oh... What to do... what to do...

I've really had enough.

It gets really frustrating when you just don't know what to do next. Yesterday the Dr. drained tons of (mostly) blood and lymphatic fluid, we'd been just getting lymphatic fluid at home, so he must have gotten a new pocket we hadn't gotten in to. Still no functioning drain, so he's just as swollen as he was yesterday. I thought I understood his philosophy on all this, but the drain AINT working.

The poor kid hasn't been able to see conistently out of his eye for the last week.

Things are just really stressful around here. We don't know what to do to get this all under control. The poor kid... He's been on antibiotics for 6 weeks now. That can't be good for his belly (or for anything). We're doing probiotics, because I have to feel like I'm doing something good for him.

He didnt seem to tolerate the rapamycin again... Even after being off it for about 28 hours, it was still in his system higher than it should have been. I think the consensus is we're at the end of that road.

We've seriously thought about just taking a week and living in Cincinnati and doing whatever it takes to get this figured out... Problem is I don't think that'd even help, because there's nothing new left to do.

This disease is far uglier than I ever imagined. And if you know Micah you'll find it no surprise he's over in the next room playing. His face is swollen like a balloon, he can't see out of one eye, he's puking just about daily, but he's playing. I wish I had his spirit.

Oh, hospital, how I've not missed you in the last week and a half. Got in late (no room in the inn), finally got infusion going at 4. Should be done and hopefully out by 7:30 at the latest. Hopefully be home by 11:30. Micah was a little trooper through two sticks... Poor kid is just hard sometimes. Did call child life (Tracy Lamar would be proud) for some back up, since I can't take more than one stick!

Still waiting on seeing Dr. Elluru. That ain't gonna be pretty. At least the tylenol is in his system (and the benadryl won't hurt either) :)

A hole in the head, a bum leg and a spent immune system.

FW Doc tomorrow to hopefully fix the drain-o. Cincy Thursday to fix the immune system.

Still having leg issues. Might be slightly improved today, hard to say. Ped will yay or nay the x-ray in the AM.

The kid is a mystery!

Still not sure what's bothering his leg. It's not keeping him from walking, he's just a little unsteady and limping. As long as he has tylenol, he's quite a bit better. Doctor doesn't think it's a fracture, which is good (can you imagine if it was...ugh I'm not sure I could take it!) We avoided an x-ray for today, but may do one if things don't improve.

We had a laundry list of bloodwork to get done, I think 7 different tests in all! That might be a record. We should have the first round back this afternoon, and the rest back later this week. We've been in contact with various docs all weekend/today... The bloodwork will hopefully rule out infection, although it seems highly unlikely at this point. Unless is IGG comes back in the toilet we may not have to go down to Cincinnati this week! We are seeing a new ENT in FW to see if he can fix the drain situation. Also, learned we can do IVIG in FW if need be, although we seem to always need to be in Cincinnati for something. (Plus, I'm not sure if they'll do it at the same fast rate we've become accustomed to, since they don't have proof he tolerates it just fine). I'll take the 8 hours of driving and 3 hour infusion over the 8 hour infusion, LOL!

Is it me, or do things just seem really complicated right now? It's my life and I can't even keep it all straight!

Something strange.

Update: It's Sunday morning, and no real change. Tried tylenol last night, didn't seem to help. Got a baseline for where he was this morning (worse than yesterday) and am trying tylenol again. There's a fair chance we're going to stop the rapamycin, either just for awhile or maybe entirely. It can cause joint aches, and the hematologist isn't convinced it's doing anything for him. It's hard to say, since he was only on it two weeks, off it ten days, and been on it for about ten days again. Unfortunately, we can't get blood work unless we go to the ER. So, we'll go get it as soon as we get the order in on Monday AM. It can take 2 days to get the rapa level back, although we should be able to get the CBC/IGG back sooner, if they order them.

Micah's got some strange symptoms going on. His right leg seems to be causing him pain and is weak. He's limping/dragging his right foot just a little. The reasons could be endless. Luckily, the hematologist called me today (on a sunny Saturday afternoon) because it could have been an infection, which at this point is a trip to the ER. Looking less like an infection, and more like just about anything else. Hoping to figure it out soon. Could be entirely innocent, but it's been going on for 24 hours now, so who knows.

Coming soon!

I've been invited to take part in a really fun project, Lymphatic Malformation Awareness Bears! They will be named Luke and Leia (teehee, I didn't pick them, but they're cute!) The bears travel the country, visiting children that have the same condition as the bear. Each bear carries a story of a child with LM, and Luke will carry Micah's story! The bears are outfitted with the medical equipment of the child (trach and g-tube in our case) and carry a passport and journal.

Isn't this a super fun idea? You can read much much more at
https://www.facebook.com/#!/pages/The-Traveling-Awareness-Bears/280749945273598

and if you're not on Facebook
http://www.travelingawarenessbears.org/

They have bears for different conditions, including pediatric stroke, congenital heart defects, chiari malformation, cavernous venous malformations, and esophageal atresia/tracheo-esophageal fistula. Those bears are off on their adventures, and it looks like more are in the works.

It will be a little while til Luke and Leia begin their adventures, but you can request a visit on their website.

This is Pat, the Pediatric Stroke Awareness Bear :)

Post #301... Super exciting!

I've got something exciting to share... but you'll have to wait to find out!

(And no, I'm not pregnant... this is a Micah medical thing, sort of!)

Abbreviated surgical history

This is for my medical mama friends (and myself, it's hard to get all the info in one place!), the rest of you guys can feel free to read it if you'd like.

8/31/09
Birth- EXIT to airway, intubated 3.5 tube
9/3/09
Micro laryngoscopy/bronchoscopy (ML&B), Neck dissection (bilateral)
10/2/09
ML&B, G-tube w/ Nissen fundoplication
10/7/09
Tracheostomy, ML&B
12/10/09
ML&B
3/4/10
Ultrasound of head/neck mass, ML&B with lasering of lymphatic malformation in airway, ABR hearing screen, bilateral PE tubes
4/12/10
Sclerotherapy, ML&B with lasering
6/23/10
Sclerotherapy, ML&B
3/3/11
Neck dissection (behind ear)
3/8/11
Sclerotherapy
3/15/11
Sclerotherapy
8/22/11
Neck dissection (bilateral), right parotidectomy
9/1/11
ML&B
12/16/11
Coblation tonsillectomy/base of tongue lasering
3/1/12
ML&B, sclerotherapy right temple
5/10/12
Mass excision right side, removal of right masseter muscle
6/15/12
Abscess drained (Lutheran) 

What you really came for...

This was at the Camp Mack Festival on Saturday. We all had a good time, and I know I can say I ate entirely too much delicious food.

The other is him just bopping around the house. I'd moved this chair out of the way, and now it's his little climbing sanctuary.

Avoiding this...

I've been avoiding the blog mostly lately, because I don't really feel confronting what's going on. The kid isn't swallowing. Okay, maybe he is sometimes, I don't know... But not for the most part. Which means he's not eating or drinking for the most part. He's trying to eat and drink, for the most part it's just staying in his mouth or dripping back out. Speech and occupational therapists want another swallow study. ENT doesn't think he did anything to cause such an impairment. His 2 yr molars are near the surface, which could cause drooling, but something else is going on... The possibilities are nearly endless and I don't know where to start, if we can even convince ENT there's a problem.

We go back down tomorrow. Someone asked how many times we've been down there... I think it'd be interesting how many days we've spent down there in the last 800 or so days... Including the time we were there before he was born, we're at roughly 120. That doesnt even count the clinic visits/follow ups/day hospitals. Maybe someday I can figure out a general number. It's kind of depressing, so maybe I shouldn't.