Kyleigh's second night

Travis went home that evening to stay with Micah, despite all the drama.  The nurses talked  me into sleeping on the OB side for a few hours... The Nicu was really busy that night with an emergency surgery on the floor (never a good day), so we really weren't supposed to be over there anyway.  At about midnight i went over to check on her and caught one of the neonatologists that was there for the surgery.  He explained that he'd examined the ultrasounds they'd done during the day, and that they saw something that appeared to be a mass in her abdomen, between her spleen and her stomach.  it was about 1x1" and appeared to be not attached to either organ, but it was hard to tell.  He wanted to do a CT scan immediately to get more information (of course there was a multiple trauma car accident that night and radiology was really busy).  He also advised us that since he wasn't sure what it was, we should be prepared for possibly doing surgery in the next 24-48 hours.

I'm pretty sure after he explained all of this my reply was, "What?!"  No one had mentioned any sort of mass, the ultrasounds were supposed to be of the area of her intestines that was of concern.  Thanks be to God, the doctor on that night is probably the sweetest and easiest one to talk to in the group.  He did his fellowship at Cincinnati Childrens, and has the great bedside manner to prove it.   Anyways... so here I was, trying to figure out what to do.  Do I call Trav is the middle of the night and have him drag Micah out? At least I had my wits about me enough to realize I could call my parents and have them come over to our house and have Travis come up here.  My parents were already having a heck of a week with her in the nicu and my grandpa in the hospital, but they'd kill me if I didn't call, so I did.  Don't remember when exactly Travis got up there, but they got her down for a CT at around 5 am.  The doctor came by shortly after (if i remember right) and explained that whatever was on the ultrasound, there was absolutely nothing on the CT scan...  Whatever it was had disappeared or never was there to begin with!  To this day there's still debate on what went on that night.  We'll rack it up to Hartman family miracle # who knows how many.  We were so relieved beyond imagination and promptly passed out in the hospital couch and chair.  LONG night.  

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.

Part 2

So, forgot to mention Micah was to go up to the picu after surgery.  At this point, whatever, i didn't question because that's probably where the most competent people are!
We head into the waiting room, and realize that if i don't eat now, i won't (i don't leave Micah, ever)... And Travis needed to leave as soon as he heard that Micah was fine to go to work.  So ran off to grab something and eat really fast, and we get the call he's out (about 25 minutes, fast!) They ushered us to a conference room, and we sat.

And we waited.

And we waited.

About 20 minutes later, they called us back to see him.. .Not in the picu, in recovery... Alright, well i guess we'll see.  So i went to see Micah and Trav stayed to hear what the doctor had to say.  So he waited.  Thirty minutes after the first call we said forget it, and Trav came to recovery.  They had to page the doctor and he showed up, 40 minutes after the first call... That's way past acceptable.  The doctor was nice, said he'd done well, explained what he'd done, gave us a script for pain meds and told us barring any trouble, we were free to leave.

So, in Cincy they do one of these things after surgery: 1) Send the child to recovery (PACU), then home.  2) Send the child to PACU, then to a floor to stay or 3) Send the child straight to an intensive care floor.

Here's what happened today.  We went to recovery.  He trialed off oxygen, did great. He was awake, unhappy, but not in excessive pain.  That lasted probably 30  minutes.  Then we were informed we were being moved to another area... WHERE?  Literally across the hall, in a very similar set up.  Pretty much zero difference.  Of course Mr. Man wasn't happy to be moved... and it's not easy when they're attached by leads on their torso, a pulse ox on their toe and an i.v. in the arm.  We had to wait for an hour after he got to the second recovery (i'm pretty sure at least) and he had to tolerate something in his tummy.  Strange.   They too his i.v. out and didn't hold pressure long enough (or check to see if it stopped bleeding) and it started bleeding everywhere.  Down his arm, leg, my leg, the floor.

"Umm, he's bleeding." (the nurse doesn't respond or turn around...)

"Umm, he's bleeding a LOT!"  (nurse grabs gloves, puts them on and grabs some gauze.)

Super.

We finally got out of there.  Trav left as soon as we saw the doc and was sweet to bring some of our stuff to the car. Unfortunately neither of us thought about where my wallet and keys were... in the bag he took to the car and locked.  So Trav was an hour and 15 minutes away w/ the spare... Thank God my mom was home and could go get them from him and bring them.  These are the types of things i don't forgive myself for... it's stupidity... and because of me he had to sit around the hospital for an extra two hours.

Never been so happy to be home.   Bad day. And pretty much every single bit of it was unnecessary.  Next time we'll go to Cincy, no matter how small the procedure. Lesson learned.  And yes, i'm a huge hospital snob... But come on, most of these things are unacceptable, not me being picky.

Poor Trav got home from Camp at 6:30, and had a youth event from 7:30-11.  We're all going to sleep well tonight. 

When your surgeon says...

When you email your normal surgeon the events of the day, and he replies

"What a day!"...

Probably not a good sign.   Micah's chin swelled an insane amount in 24 hours.  By bedtime, it was about the size of a golf ball.  Seriously. And then.... it exploded.  Well, that's probably not the technical term, but it did.  AWFUL.  Disgusting, and i've seen pretty disgusting things with him.  i'll spare you the details, because i want to throw up even remembering them.   This was of course, when he was half asleep at bedtime.  Poor child was in SO much pain, but we tried to drain it as best as we could.  Eventually we quit because he was miserable.  The good news was he slept better and had a lower heart rate since he was more comfortable.  The question was whether to show up for surgery anyway... And because we have the most awesome Cincy surgeon, he replied to my email at 9pm and said that we might as well get it cleaned out well, since this infection has been so persistent.  We scheduled it for Friday AM at Lutheran... our first surgery NOT at Cincinnati Childrens.

The surgery went fine, and he's doing fine, but i was NOT impressed. At all.  Cincinnati has made me a SNOB when it comes to how things are done.  The surgery was scheduled at 10:30, which no one could even tell us til 9:30.  We showed up at 8:30, and went up to the surgery check in desk, behind another lady.  One of the staff asked if i was with her, "no" and she sent me to the window around the corner. Cool.  The lady at the desk asked if i was here to check in, and i said yes, and she snappily told me to sit down and they would call me... How do they have any clue who i am to call me?  i said the other lady sent me over here, and she told me again to have a seat.  Super. Love the snappy attitude, because, of course, there's nowhere i'd rather be today. So we sit.

They call me, at 9:00am, to register.  Really?  We register... and sit.  They call us to pre-op at 9:30.  For real?   We go to pre-op where they tell me, after requesting, when surgery is.  10:30, but the surgeon hasn't gotten to his 9:00am case yet, so he's obviously behind.  So we sit.  We get the normal run around of pre-op, but no one mentions ANYthing about the trach... Sort of an important detail.  No, "What type of trach does he have?" No, "Do you have spare trachs to send with him" No, "What do you suction with and how far?"  Not impressed.  So, i volunteer the info, and when asked if i need to send trachs with him (i do, of course), she says she doesn't now, and will ask the surgeon.  (which she never does, i do).  We meet w/ the anesthesiologist, and the doc and sign papers.  We've put his trachs, stuffed animal, etc on his crib so they'll go w/ him. They come to get him, and don't use the crib.  And don't pick up the trachs. So, Travis gives them the trachs (they don't even have this brand at this hospital, sort of important!)  and they leave w/ him.

 That's the first half. Gets better.... (worse)...

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.

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!

Someone replied!

Goodness, someone finally replied.  The good news is we don't have to go down a day early, we can go down the day of surgery.  Surgery is an "afternoon" slot, we won't have any more info until two days before. 
Here's what goes through the head of a medical mama when she hears afternoon surgery:

Pros: Yay, don't have to go down the night before! Saves $50, a night of poor sleep and one time of setting up and tearing down all his equipment.  (About 20+ minutes up, and 20 down).  We'll still bring everything in case we have to stay in a hotel for any length of time. 

Cons:  Very hungry child to distract.  Early AM surgeries they sleep through most of the hunger.  For example, (this is vaguely, haven't done that math yet)... 2pm surgery means (3pm surgery, lol)..  no "food" after 6am, no clear liquids after 10am. (yay for a tubie that can eat overnight!) That's a long drive down w/ a hungry child!  We might have to do drive through and stop somewhere to play so he doesn't beg for the random food we can give him.  Other big con, surgery never runs on time.  "on time" is a half hour late, normally they're an hour to an hour and a half behind.  Which means, for a 2pm surgery, you have to be there at 12:30, and are in a 8x8 foot room from 12:30-3:00.  That's when you pray for an opportunity for a long, uninterrupted nap (ha, ha, right!?)

And, because i'm lazy... this is copied from FB:
 Hotel booked... and even the one closest to the hospital (and cheapest) because we're seeing a doc from University Hospital, we can (hopefully) stay at the hotel for UC patients.

That saves us about $15 per night, and the cost and hassle of driving 15-20 minutes to and from the hospital (which... means i'll actually leave the hospital!)  This "hospital hotel" is a few minutes walk that's safe enough during the day i can go by myself.  We're sending in our info to the Ronald McDonald House.  Even though it's a longshot, we're going to try in case we end up there for 5+ days.  That would save us about $15 more per night, plus almost all food costs (it adds up fast!).  The last 2 big surgeries we spent 8 days in the hospital, and 3-4 at the RMH.  We are hoping for less this time! We've learned a lot since then that should get us out sooner!

So, there's a peek into the logistics of the day of surgery.  Don't be jealous, now :)  

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.

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.

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.

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!

Look at my cute cheeks!

Micah has nothing on his face! His surgery went really well which was a huge relief. It was delayed 3 1/2 hours which was no fun... no fun at all. Once he got downstairs, it was 4:45pm. They got him under anesthesia and surgery started about 5:05. They called us back to talk to the doctor at 5:5O. It went SO fast, way faster than the 2 + hours we were told. It went well and the doctor was pleased.

There's a lot of information we'll pass along in the next few days, but what's important is that he's doing well.

We have a few cell phone camera pictures to pass along. He's pretty snockered (I think that's what a nurse called it)... either way, he's completely sedated in these pictures because it was when he just got back... You can see the trach and g tube in one picture. He's got a lot on him in the picture, don't worry most of it's harmless.