Thursday, September 29, 2011

Not a post to read with your morning bowl of oatmeal.

Sorry for the lack of updates. Our freshly installed internet decided to stop working, and so far, 6 days later, Century Link has failed to fix it.

We went to Cincinnati Friday, they cut open two slits on his face, drained the fluid (estimated about 6-7 ounces), and put in a drain above his ear. Now, I'm not a fan of drains in general, but this is the worst kind. It looks like they put a straw in his skin, and stitched it in place. It doesn't empty into anything (so all over his hair)... It's so open it could catch flies. (It's covered, don't worry). Talk about infection risk, yuck. (As long as it's covered it should be fine, but still).

The good news is Micah was somewhat of an immune system at the moment. His white blood cells are decent (they're never good), and his IGG should be up still. We've made two trips out, one for pizza with some of our youth and one to do some visiting in Warsaw. Both good times, and he's not even sick yet! He's off the rapamycin due to the strange things it was doing to his body, although I'm sure we'll start it again soon. Boo! So, one infection risk of 4... That's the best we've done since oh... March?

We go back to Cincinnati Monday. I'm pretty tired of these visits, won't even lie. Should be quick and easy, although it's not til 5:30, so it'll be a late drive back.

Micah's doing well though, so no complaints.

Thursday, September 22, 2011

Cincy's Liberty campus, tomorrow afternoon. Maybe I can do it myself, since it's not in the city? I just printed off directions not two weeks ago... didn't use them, probably tossed them. Bummer.

More frustration on the lymphatic font.

His face keeps swelling and swelling, more than what I thought was possible. All the surgeon wants to do is cut open a slit and let it drain, then have us drain it daily (it's awful, but we've done it before). The hope was the Ped was going to do it, but he won't. I spent 5 hours waiting to hear that today. Now it's 3:30 and we still have NO PLAN. Another day, totally wasted. Now we need to find out if we are going down tomorrow (and if we need to leave tonight). Luckily my dad has offered to take me down (Travis is absolutely bogged down this week), but it would be nice if I could know so he could get off work.

Wednesday, September 21, 2011


(this will probably be a very whiny post).

*update* They're letting us stay put til at least Monday, hooray!*

They pulled the drain and of course, it ballooned up literally overnight. We have to try to open up the drain site ourselves tonight. We did it with the last surgery, but it really stinks. Won't even lie. The drain site has been closed for about 48 hours, so hopefully we can get it open. If we can't, we probably have to go back to Cincinnati Friday to put a drain back in. If we can get it open, we have to go back next week it looks like (to put the drain back in).

As some of our youth kids would say... "epic fail". That's about right.

Had to get repeat bloodwork today. I believed they called the vein in his elbow "old faithful" because it's been poked so much recently.

I repeat... UGGHHH. We did get out of one day of therapy, saving a trip to FW. That's good.

Monday, September 19, 2011

Quick recap.

First IV stick didn't work, got blood off, but couldn't get it threaded. :( Second worked, but half the bloodwork clotted before it could be sent, and they couldn't draw off the IV. Luckily, the nurse was super nice and said "forget it" to those particular labs.

Since he's had IVIG a few times before they were able to run it at twice the speed of normal, 2 hours instead of 4. That meant we were on the road by 12:30... A very unexpected surprise!

They decided to pull the drain since it's showing no sign of slowing down. They're hoping a compression sleeve (basically) will help slow it down. At this point, it's something to try. If it doesn't work, what we were doing wasn't working either. If nothing else, he should be losing less fluid this way since at worst it'll fill up and stay put.

The rapamycin hasn't done much (although it's only been two weeks). A bit of a scare today... his level of the rapa in his blood was about twice what it should be? Why? No one seems to have ANY idea. Scary stuff. We're taking him off it til Wednesday when we have to repeat bloodwork *whimper* and make sure it's out of his system. It's the same dose it was after his last surgery... Puzzling. His body isn't processing it like he should all of a sudden.

We are headed back in two weeks, barring any major changes (haha).

This week is crazy busy... We could use prayer for that alone. Travis has class T, W, Th... works Friday and half day Saturday. Won't even start listing Micah and I's agenda.

*Deep breath*

And this was the quick recap, right? Here's a pic of the sweetie passed out on benadryl.

Saturday, September 17, 2011

Micahs Miracle Medical Story

On June 9, 2009 we went in for our 24 week ultrasound. After what seemed like forever of looking at it, she called in the doctor. Didn't take a rocket scientist to know something was up. The doctor explained as kindly as he could that he had some sort of mass on his neck, but didn't know what it was. Two days later we went to the high risk doc, who explained it as a cystic hygroma, a mass that had a 50/50 chance of being fatal before birth. An amniocentesis ruled out genetic abnormalities, which meant he had an improved chance of survival barring cardiac failure. If he made it to 30 weeks, we'd be sent to Cincinnati for further evaluation. Obviously, he made it! His 30 week tests came out as well as they could, no cardiac problems, no obvious airway blockages etc. They asked us to "relocate" to Cincinnati in 2 weeks, as these babies typically come early. At 32 weeks when we returned I was hospitalized for pre-term labor, ended up being there 17 days that month. Micah was insistent on holding on which was fantastic!

Micah decided that instead of waiting til his planned C-section a few days later that he'd make his appearance at 8pm on August 31st. They did what was called an exit-to-airway procedure (I was under general anesthesia) to do their best to ensure they could intubate him before he was cut off from my oxygen supply. From what they say, he handled it like champ!

Welcome Micah!!!

5 pounds, 13 oz and 19" long.
What we hadn't talked about much was the impending surgery, and the fact that I wasn't going to get to hold him until after surgery (ended up being 6 days, yikes!) He had surgery on September 3rd. This was Micah after surgery number 1, the first day he could be held.

After another week or so they decided he didn't need his breathing tube anymore, and he was extubated. About a week later he started showing signs of respiratory distress and after a particular test they found he was aspirating on his saliva very severely. Luckily, he'd been tube fed or had IV nutrition until this point.

There wasn't a lot of discussion to be had, he had to be reintubated and eventually trached. He also needed a permanent feeding tube. He had his feeding tube at 5 weeks, and after finding mass in his trachea, he was trached at 6 weeks. After his trach surgery we were so happy to see his little face! We were on the grow and get trach trained plan for a few weeks after that. Not to mention the "insurance won't pay to let us have what we need to go home so they'd rather pay for weeks of the NICU" plan. Irritating beyond belief!

By now, Micah had a firm diagnosis of lymphatic maformation. In very easy terms, his lymphatic system did not form correctly. It happens in about 1 in 6000 live births, but often not this seriously. It is not a genetically inherited condition, completely random. His type primarily consists of macrocysts, very tiny little bubbles filled with lymphatic fluid. This type of LM basically is a disease that is managed, not cured. It recurrs, although hopefully with less severity after each surgery. We believe that his mass at birth inhibited the growth of some of the branches of his right facial nerve.

He got to fly back to Indiana on a medical airplane ride, where he spent three more weeks in the hospital before getting to come home. Spent a whopping 3 months in Cincinnati, he spent 8 weeks in the NICU there and 3 weeks in Indiana.

Welcome home Micah :) It was mid-November when we finally took him home. It was a beautiful crisp fall day.

At about 6 months old he was declared safe to start trying baby foods. By this point though, he wasn't interested despite the hard work of the therapists. At about 11 months he was cleared for liquids but agian, same problem. He has multiple difficulties in his mouth/tongue/jaw area that make it difficult to do oral feedings.

Micah at 5 months

We didn't have to go to the hospital much for the next year. He had a few procedures to remove the mass from his airway and a few other odds and ends (scopes, P.E. tubes, etc). Considering his prematurity and time lost in the hospital, Micah was hitting most of his developmental milestones very nicely. (Of course, not speech or feeding, but we'll focus on the good.

He had a really big birthday party and we went on vacation that fall. By now, as you can see, the mass had be returning pretty rapidly and decided that a spring surgery would be in order. As you've probably noticed about Micah, he's a happy, pretty well adjusted little kid. He has about as much personality as you could handle, and he brings people a lot of joy.

The March 2011 surgery was a doozy. They werent able to accomplish as much as they'd hoped because of major blood loss. It helped though, especially with his ear and probably his hearing. Unfortunately the surgery results didn't hold up as well as we'd hoped. He still made a really handsome little man dressed up for Easter (here's the before/after)

His surgery recovery wasn't very easy. He spent 3 days in the PICU (the Peds ICU) and about 7 more days in the hospital after that. He lost a lot of fluids from his drain, and it lasted a total of 10 weeks. He needed replacement IGG (immunoglobulin G) and eventually a crazy medicine to stop the drainage. For whatever reason, a medicine they use to prevent transplant rejections often works to stop lymphatic drainage (don't ask, I don't know!) Problem is, it's an immune suppressant. He was on the medicine a total of about 4 months before the next surgery, just this August. The August surgery was much longer, but overall less dramatic than the March surgery. (THANK GOODNESS!) He spent 8 days in the hospital, and is still draining (about 3 1/2 weeks later). The results from this surgery are much more obvious. I don't have a super recent picture on my computer, I apologize.
 Here's a brief update on the last year.  Micah will be turning 3 very soon!  This year was a little less busy than the previous two, but still had some big surgery.  They removed a large muscle in his face that had never formed correctly and was holding his mouth too shut.  While this surgery helped, it ultimately didn't solve our primary problem.  Progress has been slow, and now we need to wait for him to grow so that he can have enough room in his mouth for them to fix his airway issues.
Micah has been doing great.  He's ornery and fun and has a ton of energy.  He babbles to his hearts content (when he wants to, he's also very stubborn!).  He will start preschool this year in hopes it will help him catch up on some of the social aspect he's missed.
Physical Therapy- Febrauary 2012

Micah at the zoo, August 2012

 It has been quite the ride, I won't lie. I wouldn't change it for a thing. I remember reading all the scary words that come up with the term cystic hygroma.. the fetal hydrops, the poor outcomes. It's not easy, but this kid was put on this earth by God for a reason. Never one day have I doubted that. He's our Miraculous Micah. :)

Friday, September 16, 2011

The IVIG monster...

The IVIG monster strikes again! Usually it only strikes every 6-8 weeks around surgery times, this time it was 2 1/2 weeks! As of Tuesday his count was 368 (most ppl should be above 400, they allow Micah 350). So inevitably, it'll be down well below 350 by Monday. So we'll head to Cincy or part way Sunday night to avoid getting up at 4am for our 8:30am appt. The good news is since it's an AM appt, we should be back at a decent hour that evening. Usually it's 8:30appt, by the time they get going it'll be at least 10. 5 hour infusion, hopefully out the door by mid-late afternoon, home by 8 or 9.

I really hate staying overnight places though. I'm so freaked out about bedbugs. We've got our "favorite" hotels both inside and outside of the city that haven't given us bedbugs yet... Speaking of which, I should probably book one of those.

Oh, the joys of medical parenting.

I am working on a fun post, though. I promise. And if you don't have anything to do on Oct 1st, come join us at the Camp Mack Festival. They have pontoon rides, hay rides, kids activities and delicious food (and I'm sure so much more!) If you want more info, let me know. (or go to

Thursday, September 15, 2011

Last minute change.

Last minute change of plans. No Cincy trip tomorrow, he needs IVIG which means we need to go to the day hospital and can't get in tomorrow, need to go probably Monday instead. I didn't catch what his IGG was (she talked to Travis), but it's only been 2 1/2 weeks since he got it in the first place. That's a record of an unfortunate variety. At least we have a great nurse who stays on top of his blood work, even when we have it done locally.
I feel like I'm upside down this week with busy-ness. Next week is Travis' 3 day class at Bethel (T, W, Th) and was going to work at Mack M, F. Apparently Monday will be hospital day instead.

Tuesday, September 13, 2011

Had enough of this drain!

Update: The drain gets to stay in Indiana tonight :) LOL. We have to go down this week, but don't know when yet.

Well, the drain continues to make our life more dramatic. The stitch holding it in place has come out, so technically there's nothing holding it in. We've used tegaderm (think very thin very sticky tape) to tape the length of the tubing to his shoulder so it won't get pulled. It could go either way... they could just say, alright, well as long as it doesn't come out, you're good. Or they could say, come down ASAP and get it fixed (I know, couldn't be more different!) The being 4 hours away doesn't help of course.
Sent some emails tonight (everyone gets emails on their phones, so hopefully they'll get them). If they don't get back with me tonight, darn. We'll see what happens... They're not happy with this drain, but he needs one, so it's hard to say what they'll do!

Saturday, September 10, 2011

Drain drama...

We've had enough of this drain (to our defense, it's been almost 3 weeks!) It's been possibly infected, and now it seems to be coming out. We've been on hospital notice since Thursday, waiting for more signs/symptoms of infection. Now it seems to be coming out, or maybe it's just that the swelling has gone down so much we can see (what's supposed to be) the internal part of the drain. If it's infected, it's a trip to Cincy, pull the drain and probably at least some IV antibiotics.

*dramatic sigh*

We'll see what state we sleep in the next few nights... I'd be so bored if I had a healthy kid. (I'm joking).

Thursday, September 8, 2011

Happy Birthday Micah!

We celebrated Micah's birthday on Saturday... I'm a little (or a lot) slow on getting the pictures up, but they'll be here someday!
We're actually getting the internet this week, so hopefully that'll make it easier! (We've not had the internet in the 4 years we've been married!)