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.

Oh, so silly.

We're at the Ronald McDonald House now! It's good to be here, but we're still wishing we were home. Micah is enjoying the playroom and all the toys.

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.

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.

Quick update...

The plan is still the plan, even after 24 hours. They tried injecting the site with the sclero agent, but just like last time, it didn't seem to stay in. The good news was they used ultrasound to see what was going on, and some of the area is shutting down like it is supposed to be.

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.

I'm up for the fight...

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!

Fiesty mama on the loose.

I'm really starting to push about what (if anything) can be done to get us out of here (at least across the street to the Ronald McDonald House). I can empty a drain every 6 hours... the question is just about antibiotics. Is it worth a PICC line to get out? Maybe not, but it's hard to say not knowing how long this will keep draining. Some kids take weeks... Hopefully regular antibiotics will suffice. Fiesty mama on the loose! He's just so much more unhappy here.

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?

Another day...

Well, each day we are here they keep adding another day. It's such a fluid (pun intended) process. The drain they put in yesterday was capped, but still leaking around the site. They uncapped the drain and got out about an ounce of fluid (some lymphatic fluid, blood and doxycycline). They've got it on bulb suction, which is supposed to pull it out and pull the area together so it'll scar shut from the inside. After about 24 hours they'll see how its' doing and take it off suction if they can. Then they'll watch for awhile (read: another day) and see how he does. I'm starting the idea "can't we just do this from the Ronald McDonald house? It's like watching paint dry around here!

The good news is we get to go to the toddler playroom this afternoon! Hooray! We've not been there before, but it'll be nice to play somewhere other than our room. We've taken periodic trips around the unit, but we'll have fun playing.

Funny, funny kid

Labeling posts... So, almost two years later I figure out how to label the posts... with 218 posts to date, I can't label them all. I went through and picked out the big milestones and hospitalizations. It's an easy way for me to keep track of hospitalizations, and for the people that surf on over to learn about lymphatic malformations, trachs or whatever.


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!

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.

The next Howie Mandel?

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!

Well, do something!

What a MISERABLE night. I slept a half hour, maybe an hour broken up into little 15 minute chunks. Nothing seemed to go smoothly AT ALL. His last IV is shot, so I assume he can't get pain meds in until they get a new one.

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.

Houston, we have a crib.

Now that Micah is awake we finally got him into a crib. I can finally relax and know he's not going to roll off the bed! It's a "climber crib" where there's a plastic part that comes down from about 6' up and encloses him in there good. I haven't seen him stand up to see how far up the siderails he comes, but I'm not pushing my luck until I see it with my own eyes.

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?

When you're up, you're up...

What's the camp song? When you're up, you're up... when you're down, you're down, but you're only half way up you're neither up nor down.

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!

Waking up?

ENT said we should be able to wean him off sedation today. I'm excited, but I can only imagine it's not going to be a lot of fun. Now we actually have to keep him in one place. Hopefully he can get off his IV's so if they go bad they don't have to put a new one in. I'm not sure if the plan is to let us out of the ICU once he wakes up or not. It looks like the earliest we'll go home is Monday, and that they think they'll get his stitches out before he goes home (we were afraid we'd have to come back). That would be super.
Micah had a good night. He looks "froggered" right now, with his little arms sprawled out everywhere. :)

Micah versus sedation...

Last night, Micah most certainly had the upper hand. Overnight, the sedation won out and he slept great. Today has been quite the epic battle of little man (Micah) versus the Man (the docs). He's kept us guessing all day what's up with him. As long as the kid gets some sleep tonight, hopefully they'll let him wake up at latest midday tomorrow.

T.K.O!

So, it took hours to get to this state of completely knocked out. He was on quite the cocktail of meds to keep him sedated and still. 5 meds later, they've finally got the right mix and the right dose and he's been asleep since about 8:30.

They have him in a regular bed, which is so strange. Seems a little dangerous, but this is apparently what they do! I'm not used to him being this quiet, it's strange!

He's sporting the Richard Simmons sweatin' to the oldies headband... pretty snazzy. (Don't be jealous now!)I think I'll try to keep that for a ski band next year in the snow for him!

So far, we've been able to stay off the ventilator (or bi-pap), lets hope it stays that way. (For all you trachy parents) He's requiring about 1.5 L of 02 at 30% to keep his sats up on mist collar, which isn't terribly unusual considering the sedation I'm told. What do you think, yay or nay? Off 02, he's only at 92-94. His respiratory rate is like upper teens-25. Not great, not awful.

Anyways, we just wanted to thank everyone for their kind thoughts and prayers... and thanks to Craig for driving all this way to spend the day in this lovely city (that apparently tried to keep you here with their traffic! Sorry!)

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.

2:00 update

We hadn't heard anything in 2 1/2 hours, so I had them call back. Apparently no news was good news. They're just truckin' along and the nurse said Micah is doing "great"

If they take the time allotted, we'll be here til 5:30 or 6.

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.

Surgery tomorrow...

We're thinking about 5 hours, although they'll tell us for sure tomorrow. The nice thing about a feeding tube is you can push his formula through til 2:30 AM, and clear liquids til 6:30 AM. That makes for a much less cranky child come surgery time. (Although that will probably make me the cranky one in the morning!)

We just got a call saying there was an opening at the Ronald McDonald house for us tomorrow. YAY! That saves us quite a bit of money in the long haul. Plus, there's always food which saves more money. We'll check in awhile after his surgery is over.

I think we've told most people about the surgery he's having, but I guess I just want to put out a little on w hat to expect. They'll hopefully be able to remove half or so of the mass, starting up by his eye. It's an extremely high risk area, with all of your facial nerves coming out of that area. Surgery is always risky, long surgery just that much more.

We just want to say thanks to everyone that has sent us prayers and well wishes. We really appreciate it more than you can understand. Not to mention the practical help.. it takes a lot of stress off of us.

Keep watching here (or on Facebook, that'll probably get little updates faster)...

Lizziey, that fist bump pic is for you. You're the first one to teach him that.

We're looking at surgery at 10am on Thursday. They'll call us and tell us the time for sure sometime today. Last we heard they're booking the OR for 5 hours, although that could change too.

Micah saw his pediatrician yesterday, and he gave us a resounding "all clear" which was a big relief. Of course, it's all up to the anesthesiologist on surgery day.

I've got a lot on my mind this morning... stupid stuff like supplies that I need to sign for that need to show up today, how my plant is going to stay alive (I'm sending it to you, mom! LOL).. The trash, the recycling (Craig, you might be getting a text about that one). It's funny how the little stuff drives you crazy when you're already stressed out. Luckily this is my morning to get out of the house... But as I write this, I realize how surrounded we are by wonderful people that will help us out if we just ask. Not everyone is so lucky.

Micah is doing awesome. In the last week he's started to eat more than I've ever seen him eat. He's tolerating his tube feedings like a pro, and at times he's chattering up a storm. He said "dada" for the first time a week or two ago, much to his daddy's delight. We're not sure what sounds he's making most of the time (but that's any 18 mo old!), but we're thankful for anything.

Anyways, we'll try to let you know if anything changes in the next 48 hours. (Yikes... only 48 hours til surgery..)