More coblation...

He's out and alright... They weren't able to get in and do the normal tonsillectomy surgery, so they did some coblation to reduce the size of his tonsils, base of tongue and uvula (sp?).  Should help open things up, but a much longer road to the trach out this way.  The good news is they want to try a speech valve on him next trip down, in about a month... that's great news!  We all agreed it's time to slow down and let him have a normal life and longer time periods between surgery, since the trach isn't coming out too soon.  Guess it's the tortoise and the hare.  

Here's a little primer on the coblation deal.... i'm not sure it's a great of a deal as it's put out to be (or why would they not do it all the time), but you get the idea.


Unlike traditional tonsillectomy procedures, which remove tonsils using electrocautery, coblation is advanced technology that combines gentle radiofrequency energy in a saline "bath" to safely and quickly remove the tonsils. Because electrocautery procedures use high levels of heat to remove the tonsils, damage to surrounding healthy tissue is not uncommon. Since coblation does not remove tonsils by heating or burning, healthy tissue surrounding the tonsils is left intact. Thus, experience has demonstrated that the use of coblation results in significantly less postoperative discomfort and a more rapid recovery.

Patience is a virtue.

Things in the hospital can take forever.  This shouldn't be news to anyone, but boy... it's annoying.  At 11am, they decided to admit us.  By 12:30, we got to our floor.  By, oh, nearly 3 they got him into the system.  We saw the vascular access team at 4:30, and didn't get the orders for his meds til 5:30.  Didn't GET the meds til 8:30.  So, we ran around the floor all crazy most of the day because he had no reason to be in his room... Not my favorite way to spend the day! 

He's on i.v. vancomycin and rocephin (for my LM friends), two potent drugs.  i haven't had the nerve to as if the delay will cause us to be here another night.  We're on contact precautions i guess, which means the nurses are supposed to be wearing gowns and gloves... They told me that a few minutes ago.  So that probably means we can't leave the room, which is bad news for a 2 year old who feels otherwise fine.  His meds will run for 2 1/2 hours a day, otherwise he's unattached and in a room... oohh child life! Could be a very long day tomorrow and Sunday. 

He's fast asleep now and finally getting his meds.  Patience, Brittany... or, go to sleep. That's good too.  He doesn't have ANY night meds.. only vitals every 4 hours.. yippee!

O.R. Tomorrow...

So, the consensus is that the O.R. will be the best way to get rid of his infection.  We're doing it at Lutheran, (and it's not Dr. Smith, i don't care for him at all.)   it's the first surgery we've had there... Not sure if we're staying post-OP, so we'll see.  O.R. time is about 10am.. not sure, they never told me, only told me when to be there.

A hunch...

So, M's LM has been more red the last few days...But it's always changing, so sometimes it's hard to tell what on earth is going on.  Called the Ped about the redness in the morning, he wanted to see us and got us in 3:30.  Yay! 
By noon he was running "warm".. 99.0, by 2pm he was fussy and totally uncooperative for therapy. Huge waste of time.  By 3:45 he was 99.8, and when the Ped thought he felt warmer than that at 4:15, he was 101.3.  WHOA!  Half hour, degree and a half! 
Tylenol gave the fever a kick in the pants. Phew.  it's creeping up again, though.. We'll see what tonight brings.  We were sent home w/ orders for 20 MORE days of antibiotics.  (this is course number 5 since May 10...)  i pushed for i.v. antibiotics, but he said they only really work faster, not necessarily better.  As long as the fever stays not ridiculously high (my words, not his, lol!)  we'll do these antibiotics.  And, if this doesn't solve the problem, we're not sure what to do next, that's a Cincy question.  Poor little boys belly! 

Man, it's frustrating to go around and around w/ this infection.  Hopefully he doesn't have two things brewing... we don't need that!  He's seemed better since the fever has been down.

Pretty decent day

Surgery started on time, and even almost ended on time, only 20 minutes late!  He slept for probably two hours and hasn't been up much overall.  They were able to get the opening they wanted which was the whole goal of the day. Dr. E did a little more on the right side to bring that down a little if possible, but really the results we have already are pretty good in the world of LM.  We'll try to do a little more sclerotherapy, maybe next time (2-3 months) and lots of airway lasering. 
Micah lost a front tooth in the process, something isn't right that his teeth come out this easy.  They didn't do anything in the airway this time.  Hopefully today will lead to good results in the future.  The docs were pleased when they came in, and that doesn't happen much.  :)
He's fast asleep, and now we're playing the pain game... trying not to over medicate him but still have his pain well managed.  Morphine and tylenol will hopefully be all we need... Dr. E and i agreed that we are here for pain management and not the drain... So that should shorten our stay.  Hopefully we can get out Sunday or Monday... that would be SUPER.  We already have to be here Thursday for a post op visit.  Still no word on whether her needs iGG.  it's about a 5 hour affair, no big deal if we're going to be here but the results may not come in for a couple of days... Silly labs. Maybe it'll be something we do Thursday when we're here.
We're on a different floor than usual, so no familiar faces :(  And no spoiled rottenness.  Hopefully we can get to the playroom tomorrow though if he's up to it!

Grumble, complain, whine, moan, etc.

We're here til Monday, folks.

Could you guess who doesn't want to be here til Monday?

This is the best pic we've gotten today (mainly because we haven't had Travis and I in the same room for more than a few minutes).

His eye swelling is going down, but his lower half of his face is still really swollen. It's almost like his mouth is swollen open... the tissue is so tight. I'm hoping that's all it is. He doesn't seem like he can move it. Thank goodness for feeding tubes!

I know it's probably not something most can relate to, but I'm so glad for familiar faces around here. We've got the herd of vascular malformation people which visit at least once a day. Our first night when we were in the PICU we had a night nurse we'd had a few times before... she's nothing short of AMAZING. Today, in walked our favorite PCA (i think it's equivalent to a CNA, sort of.) His name is Jarvis and he's always fun. He was excited to see Micah, and he's a lot more fun than your average PCA. He got Micah a very "boy" blanket for his bed... It's the little things really!

He got out of surgery about 5, and all moved in at about 6. They decided to put him in the ICU and keep him sedated all night. That was a good possibility all along.
He's stable and off the ventilator, but requiring oxygen. That's not too unusual since he's sedated, at least he did that last time.
The long story short is we have to wait and see what nerve function is left when he wakes up. They looked for an hour for the main branch of the facial nerve to no avail. It's an ugly part of this disease. The main part that was left was controlling his eyelid opening and closing... Probably needless to say that's a really, really important one to keep.
He's sleeping soundly now, all tucked in with all his tubes and wires. (Literally 6 of them total, wow!) Hopefully he'll get good sleep so I can sleep some. Oh, hospital sleeping, how I haven't missed you!

The updates as they come. 3:30 update

4 hours 15 minutes. They haven't encountered any major problems such as bleeding. They are done with his "face" and are working on his chin. Not exactly sure what that means, but it'll be a little longer. No word on whether they found his facial nerve and got it out safely. Still hoping to be done by the 6 hour mark (that's me speaking, not the doc). That'd be 5:15
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He went back to surgery at 11:15... Got an update at 1:05 that things were going fine. That doesn't mean a lot except there are no major problems.
They said they would try to update every two hours or so.
So we wait.

So, we finally got out of the hospital at 4pm and headed home. His IVIG went off without a hitch once it finally got going. No adverse reactions at all. But, we are faced with a new problem... The kid has high LDL cholesterol and triglycerides. (Inside I'm saying, are you kidding me! Okay, maybe I said that outloud). The kid is in the like 10th percentile for weight. The kid gets basically JUST pediasure. Everyone is scratching their heads, needless to say. It really feels like everytime we do anything, something else happens. The rapamycin can cause this, but it seems unlikely that's the only problem (it was high after a week of a starter dose). Does the kid need lipitor or something? He's not even two!
So, his IGG level was below 140 (supposed to be at least 350-400), not 240 like I thought. Not only that, this week it was 91. But with the IVIG it should be back in happy land, at least for a month. I'm really starting to pity these doctors trying to keep everything straight.
I have a tendency to play out the future in my head, but I can't even do that anymore. It used to be "do this, then this, then this..." you know, something that resembles a plan.
Here's where I sigh dramatically.

Some info...

So, this new medicine came with a little stronger warning from the Hematologist/Oncologist than we'd previously heard. This medicine is her 'baby' so to speak, she's overseeing the clinical study and the kids not on the study as well. We're back to being "on high alert" when it comes to sickness and germs. The first 8 months of his life were that way, and to a lesser extent, this last winter. But, back to high alert. We're thankful for the fact it's spring and there's less going around now than a few months ago. But, we were looking forward to getting out and doing group things... which isn't going to happen now... For at least a couple more months.

The docs want to know anytime he gets ANY type of illness. Luckily, our Ped knows us well and does not hesitate to see us anytime something is up. He's a great partner to the Cincinnati crew.
Therefore, we will be cutting our outings at church down at least a little and not taking him to the store as much as possible. Luckily the majority of youth stuff is outside in the summer, less likelihood of getting exposed to germs.

But... if you're sick, your kids are sick or anything like that, please keep your distance from Micah.

Anyways, enough depressing stuff, here's the cute kid. He's such a trooper! We've been to Cincinnati 3 times in 8 days, and he really hangs in there for us. It would be nice if we lived closer, but at least we're not any farther away!

Meet the Trach Fairy..

This is the trach fairy. The sign says "When a person no longer needs a trach, the trach fairy takes it and gives it to someone who needs one. This year B5CA (floor) and the trach fairy have collected..." And this sign says 6, but now it says 7! Happy decan to the little guy down the hall!

And someone, please let Ronald know next time it's going to snow. He might want to dress warmer.

Here's Micah making (hopefully) his last visit to the playroom. We have to go through the main concourse so we like to try to keep the germs away. He doesn't even really mind the masks!

Well, ENT just came by and took out the stitches from his incision and hooked up his drain to suction (a little squeezed bulb). That should (SHOULD) be the last thing.

In surgery... out of surgery

Update: Alright, he's out. Only took an hour. He did fine and we haven't seen him yet. More later

He went down about 10:45, they blocked out an hour and 5o minutes. The poor kid was just starting to act like himself.

How in the world?

Our ENT thinks Micah's such a serious little guy (and sometimes it's true) But if he can pull out a smile after the day he's had... that's pretty impressive.

If the area they removed of the LM fills back up with fluid we will likely be headed to the OR to have the area injected with a sclero agent. Sometimes it takes one time, sometimes two.

We may not know too many ppl in Cincy, but we had a room full of our doctor-friends just a minute ago. The hematology/oncology Dr on the vascular malformation team, our ENT, a guy who was just hired on here, he was around as a resident/fellow here when Micah was born. Strange thing is Travis and I actually remember him! We've probably met 50 doctors/residents/fellows since he was born. We also had one of the nurses from the from the clinic. All these smarties and Micah just snoozed through the whole thing. :)

The poor kid is just beat. He doesn't want to even sit up, let alone get out of bed. Hopefully he'll be feeling more like himself (although that would be a different problem!) soon.

We're on the fun floor now, they have wagons you can take them for a walk in!

We'll let you know if we end up in the OR tomorrow.

Oh, gross.. ooh...

So, Dr. E just came to the bedside and drained (violently) at least 2 ounces of fluid from the mass... Oh goodness.... Probably the most disgusting thing I've ever seen (and blood doesn't usually bother me). Travis is sitting here going "wow, that was cool". Don't let him fool you, he didn't watch most of it.
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.

Sneak peek!

They finally took off the dressings and the headband this morning! :) Of course, it's really, really swollen (you can tell even his eye is swollen). From what I've been told, the middle third (from top to bottom) is where they worked, and from his cheek all the way back to his spine. I'm not sure he will look too different from the front.

They'll be covering it up with gauze soon, so I thought I'd snap a picture. They said we get to move to "their floor" (ENT has their own unit). It's a slight step down from the ICU. We can have more visitors over there, even though our visitors went home yesterday). There's a few other differences. He should be able to get up and out of bed over there. After 4 days of being in bed, that oughta feel good. Micah keeps signing 'up, up' so it'll be nice to get him out of bed.

I hadn't thought about it until the middle of the night, but they've been so concerned about this damaged blood vessel that they took him off his feedings and put him on IV fluids in case they need to ship him to the OR. Yikes! That hadn't crossed my mind, nor had I heard anything about it. Hopefully they'll let him eat again soon.... or else... dun dun dun... We'll have one cranky kid. But for now he's resting-ish, just wishing that people would leave him alone. They had to draw blood at 4am... if looks could kill....

Still no word on when they'll let us out of here. Either way, we have to stay til Thursday to get the stitches out.

Out of surgery...

Micah got out of surgery around 3:50, but they still (as of 5:15) haven't got him settled, and I haven't seen him yet. I'm one fiesty mama when you deny me seeing my child. Because of a complication, they moved him to the Peds ICU (from here, the PICU), instead of the complex airway floor, which is a small step below ICU. Unfortunately, only parents can visit the ICU.

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.

Delayed surgery...

They're running behind schedule, last we heard they should be here soon. Micah is taking a nap, so at least he's not upset and hungry.

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.

He's out

Micah's out and he's doing fine. He's been pretty unhappy, but he's asleep now.

Dr. E went first in surgery. They were planning a scope and trimming his epiglottis. They got in and found out that the mass had expanded a lot and was displacing his upper airway. (The rapid expansion of the mass is likely because of the cold he had a few weeks ago.. and this is how it may always be.) The malformation distorted the upper airway anatomy and they decided it wasn't a good time to work on his epiglottis. That part went pretty quickly. Unfortunately the mass expanded a LOT and is really affecting the floor of his mouth now. It's pushing his tongue up. All along we were hoping he was just learning how to use his tongue and that's why it seemed to be moving more. He came out and told us what was happening while Dr. P got started. Dr. P was unable to do any sclerotherapy in the area of his temple and behind his ear. The tissue is too dense... the first time we've heard that. He was able to drain and inject some areas under his chin, which is the most important place. He is hoping for significant results, including the floor of his mouth. They also told us the area of his esophagus responded very well to the sclero last time, they didn't need to do any more work. They did as much as they could, and are going to try steroids to see if that'll reduce the swelling and help his airway get closer to normal. Eventually the plan is to get his tonsils out, just because they're in the way.
Unfortunately, with sclero not working in about 2/3 of his mass, surgery is our only option. The original hope was to wait to age 2, but now the plan is 1 1/2 because it might not be able to wait. Dr. E said it'll likely be a 6-7 hour major surgery. Ugh. They want his nerves to develop as much as possible before going ahead with surgery.
Of course, I (Brittany) am bummed. It's mostly not good news... as Dr. E put it, this is a really hard problem to treat. He's still hopeful to be trach free by age 5-6. I made Dr. E sad, because he's not used to me getting that frustrated. We'll just keep plugging away... They want us back for a clinic visit in a month, and to return for more sclero in a 'few' months.
Even though they didn't do much, we're staying in the night and will most likely get discharged in the AM.
Thanks for your prayers.

He's out...

Micah is out and doing well. Mixed news, but mostly good.

They didn't need to do any lasering in his airway, which is super. Where they got last time looks really good. They did notice, however, that he has laryngomalacia. Essentially, his airway is narrowed near his epiglottis. They'll need to essentially trim some of that back (ouch) to open up his epiglottis. Problem is that when they do that, he may aspirate more if he doesn't have it under control. They're thinking there's a chance that his very narrow epiglottis is why he's not aspirating food and not needing suctioned too much. So unfortunately, we'll see what happens with that... Might be a step backwards.

They were able to do the sclerotherapy in his esophagus and on his face. Hopefully that'll keep the mass in his esophagus under control which might help his swallowing. They also did a small part up near his temple, essentially just to see how it goes. They can only use so much of the medicine at a time, so if it helps, they'll just do little bits at a time. Unfortunately it causes a lot of swelling, so by mouth feeds will be on hold for a few days to a week.

He's all settled in his room now (which is A3 North Room 3, not B5 like we were thinking) The plan is that if all goes well. There's internet access in his room, which will help kill the time.

I think that's it...

Back in surgery

He went back about 8:30 or so.. we got to talk to the surgeon and the interventional radiology (IR) doc before he went back, which was nice. Also got to see Micah's old surgeon for the first time since Micah left the NICU. That was great!
Micah should be out around 10:45. We'll try to get the blog updated tonight, whether it's me or mom.
They've got some grand plans today for surgery, but I'm not going to go into it all. A lot of it depends on how stuff goes, and the IR doc warned they may not be able to do all they are hoping. Plan is still to go home tomorrow.

For those who can visit, we'll very likely be on B5 tonight.. Complex Airway Unit.. there are only 10 or so beds, so come looking for us. If I can get a room number up later I will. Come see us!