Saturday, July 28, 2012

The life...

Work hard...
 Play hard...

Sleep hard!

Thursday, July 26, 2012

Go eat ice cream!

Today is Miracle Treat Day!  Dairy Queen is donating $1 from every blizzard sold to the Children's Miracle Network (which supports Children's Hospitals, locally Riley's, but also Cincinnati if you're that way!) 
Go buy yourself lunch and a blizzard!  Do you really need another excuse?

Wednesday, July 25, 2012

Aren't i cute... and ornery :)

He's feeling MUCH better today... Swallowing and talking up a storm! Phew! :)

Tuesday, July 24, 2012

Something worth hearing...

We've been trying to connect with the hematologist that's the director of the vascular malformation clinic for about a month... They went to an international vascular anomaly conference and she wants to discuss some of the things that went on...
As much as i've loved the idea of not doing anything for the next few months (note you it only lasted what.. 3 days) if there's something we need to hear, there's something we need to hear. 

Sunday, July 22, 2012

The problem, as it stands.


 This is a picture of a normal airway from a scope.  Here's the highlights of what you are looking at:
1=vocal cords, 2=vestibular fold (false vocal cords), 3=epiglottis,
5=arytenoids, 7=base of the tongue

This is Micah's airway, a similar picture but a little wider shot.  You might be able to guess what some of our problems are... Namely the size of his tonsils (at the bottom), the shape of his epiglottis, and that big white spot on the upper left...   Oh, and the fact you can't even see his cords or false cords.

There's a little ENT lesson for you.

Saturday, July 21, 2012

Homeward bound!

No one had any problems with us leaving today, so hopefully we'll be out of here shortly. He had a good night once he fell asleep... he was out til 6:30am!  He got off oxygen once he calmed down and got some tylenol. 

Friday, July 20, 2012

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.

Thursday, July 19, 2012

Another great LM story

Here's another great story about some of my "other" family, my LM family.  Abby, a young lady with LM, describes what it's like to grow up with a LM.  

The good thing about a small trach!

We've been treated to more of his voice and laugh the last few days with the smaller trach in..  but i'll be glad when he's got the normal size in, much safer!

Wednesday, July 18, 2012

Surgery time

Late afternoon surgery time, 3pm... Not my favorite, but at least it won't be an early morning leaving! 

Monday, July 16, 2012

A story about the use of rapamycin (sirolimus)

This story highlights one of the great stories coming out of the rapamycin usage trial.  While it doesn't appear to be panning out for LM's in all areas, it's exciting to see it helping others, including this cutie pie!

Sunday, July 15, 2012


Micah doesn't have any signs of infection right now, yay! His site is still open and draining, so we'll see what happens when it closes.  Unfortunately even though we're not infected, he has surgery on Friday so we're not going to be around too many people between then and now.  
The biggest thing going on right now is his trouble swallowing... we're not sure what's going on.  Something seems irritated or inflammed in his throat/upper airway, because he's coughing up blood on occasion.  The surgery will hopefully find the cure the problem.  They're going to do his tonsils and adenoids (again, long story).  With this comes the typical possible problems of doing tonsils, but hopefully we'll be alright. They'll also be trying to clear up  his airway (as i explained to a few people this morning, it'll be one of many).  They're content to leave the outside of his face alone for now, maybe do some sclerotherapy in the future.  Right now they'll be HARD pressed to operate on the outside again.  The last one was absolutely necessary so i don't regret it, but after over two months of infections, I'm SO over it.  

The crazy thing is that he could start school in a MONTH.  I'm not going to go into all the details, but we're still not sure what's going to happen there.  Things seem more promising to cover his safety needs (nothing the school is offering, but whatever...)  But with the trach problems we've had lately, i'm not real confident sending him anywhere right now.  Again, hopefully the cause of that will be found and fixed in surgery.  

Baby girl seems to be a happy active bun in the oven, hopefully content to stay put... Only another 9-10 weeks!  With Micah i was put on bedrest the equivalent of a week from now... and right now that sounds fantastic (of course, it wouldn't be after a few days!) 

Friday, July 13, 2012


We are cured (hopefully), set to return for surgery next week. 

Thursday, July 12, 2012

The plan (or lack there of)

So, we leave tomorrow.  One of the following could happen.

1) We are seen in clinic, declared "cured" and sent home.

2) We are seen in clinic, declared "infected", and sent to main campus and admitted.  Dr. E decides he doesn't want to use the surgery he has on schedule on the 20th, so we go home with a picc line (long term i.v. access), for 4-7 days of antibiotics and hopefully have someone locally remove it...  (Note you, we've never done a picc line, but i'm told it's not too difficult in the grand scheme of things).

3)  We are seen in clinic, declared "infected", and sent to main campus and admitted.  Dr. E decides he DOES want to use the surgery he has on schedule on the 20th.  We pray we get into the Ronald McDonald House by the time he's discharged so we have somewhere clean and safe where we can come and go from the hospital.  Have surgery on the 20th,and be discharged a day or two later (assuming no complications, ha!)

We really are hoping to get into the RMH.... Unfortunately it's about the worst possible time typically (middle of summer)... Travis needs to be home some of the time and we need to be settled somewhere! 

Can you feel the stress?

Well, he's not concerned :) (Most of you have seen this already, but for those who haven't...)

Sunday, July 8, 2012

Trying to live it up, sort of?

Well, our summer has been slipping away thanks to too hot weather, antibiotics that say to stay out of the sun, drains, infections, etc.  Disappointed doesn't even begin... Summer is supposed to be fun, when you can get out of the house and well... get out of the house!   i'm glad we got a lot of great weather this spring and had a lot of good times.

Then i remind myself he's supposed to have surgery in 12 days... at this point it's been pretty much off my radar!  (How is that possible?)  i can't even tell you what the next 12 days will bring.  We have plenty to sort out by then.  First, we can't get his regular trach size in, and after a terrifying change that ended up in one button short of calling 911, we're not going to try again until a pro has put it in and he site is stretched out.  There's some tissue on the inside of his airway that needs removed (in that surgery in 12 days), but that shouldn't be causing this much trouble... so we're not sure what is.   After consulting with the ONE person in this state i've been in contact with that has a child with LM, we hopefully have a local ENT that can help.  Second, we have this stupid infection.  His primary doc in Cincy wants to see how things are at the end of this course of antibiotics before we proceed with the i.v. vancomycin.  At this point, the director of the clinic seems very sure this is the way to go.  So we'll be down in Cincy Thursday or Friday if we can get in, and may be staying for a good long while.  From my non professional point of view, the infection is still here. 

There's no telling what the plan is... he'd need to be inpatient for a few days, probably, but we have to figure out if we can do the infusions here or if it would be easier to try to do from Cincy at the RMH (not to mention the surgery would be in that time span... don't worry, i'm confused too!).  Hopefully we can get into the RMH if we need to, because we need to be able to have a plan...  There's a lot up in the air, and that's an uncomfortable place to be...

(And remind me, never blog at 11pm..  even after a few changes this morning, that was a terrible post!) 

Friday, July 6, 2012

Another opinion...

Finally got to discuss Micah with the hematologist that heads the vascular malformation clinic. Her recommendation is 7-10 days of i.v. vancomycin. She has seen a handful of LM/vascular children who don't respond to anything but vanc. His ENT doesn't want to do that yet. He wants to see what happens come early next week (his 10 days of current meds ends Thursday, but we should be seeing results now/soon). There's a chance we can go home or ronald mcdonald house w/ a picc line after a few days. So, we'll see. (again)...
The saga continues. 

Thursday, July 5, 2012

Baby girl

All seems well with baby girl (other than the fact that she doesn't have a name, LOL).  We had an ultrasound and everything was "incredibly normal" the doc said.  She doesn't appear to want to rush her entrance which is good.  Today is 28 weeks, 7 months!  The doc wants to be extra careful still, but hopefully after another month we'll be pretty well in the clear. 

Baby is about 2 pounds! Yay! 

Quit it!

Whoever is telling Trav i'm being whiny on the blog, lay off!  He doesn't read this, quit telling my secrets. :)

We're waiting out this course of antibiotics.  His largest area of infection is packed w/ gauze which we are removing a little at a time (gross, for sure).  One area seems improved, the other does not.  His antibiotics say to stay out of the sun, another 10 days lost.  Well, at least it's so hot we're not missing much.  We've been trying to play outside in the morning, but it was 90 plus by 10  yesterday so we tried 8:30, and it was about 80... much better.

Monday, July 2, 2012

The antibiotic post.

14 days of amoxicillin
7 days of septra
10 days of keflex
and 10 days of augmentin
3 days of rocephin
3 days of vancomycin
7 days of clindomycin

(and now 10 days of omnicef and 10 of flagyl.. oh, and throw in some cipro because SOMEHOW he may have an ear infection brewing. HOW?!)

(need somewhere to write all this down.. all since May 10.)

No admit

Infection drained, sent home with MORE antibiotics.  Wouldn't have guessed there were this many different antibiotics in the world.  Please Lord, let this get better.
Really hoping that not admitting him was the right decision... But it's good to be home. 

Sunday, July 1, 2012

Heading out...

Heading down  to Cincinnati tomorrow. Can't win with this infection.  Doc wasn't sure about admit or not.