Home!

We got home yesterday about 4pm.

We go back Thursday, LOL. So goes the life. He's going to the OR to get his stitches out, get his drain replaced and get an airway scope.

Twiddling our thumbs...

We are earnestly, sincerely hoping that at 6:30 tomorrow morning they are going to say, "see you next week! (We already know we have to come back Friday or Tuesday or something).

We've been trying to kill time... and kill time... and kill time. Spent some time in the playroom.



Spent some time in the wagon.

Spent some time roaming the hall floor.

Spent some time throwing balls.

We're all pretty ready to get out of here.

I'll share a little story I put on FB. Never got the picture, but you better believe it was super cute.

There's a probably 5 year old girl on the floor with her stuffed dog. The dog apparently can't come into her room (in her mind) so he's sitting outside. So, the nurse took two of those ugly patient tubs and put them together, cut out an opening and made a dog house! She covered it with the comics from the newspaper. The little girl was SOOO happy!

The mom was just tickled as well. It was the highlight of our day. The girl had a trach and asked if Micah had one too. She was probably here for a capping trial (put a cap on the trach and see how they do, a step before taking the trach out). Boy... she'd talk your ear off. Her voice was very raspy and breathy, but I got most of what she was saying. She literally would talk until she couldn't talk and then gasp for air. Apparently not too used to being capped!

Anyways... if you don't hear from us online after 10am, we're probably on our way home.

Happy Birthday, Grandma Linda!

Wishing Grandma Linda a happy birthday! Sorry we can't be there!

Try me...

So, on rounds this morning they confirmed we're stuck here til Monday, and even after that the question was whether we can go home or stay local. Seriously, if we're stuck here I'm really thinking about going to the zoo! Of course, Micah's super swollen slightly black and blue face might get some looks (I didn't remember his big and floppy hat), that's nothing out of the ordinary.
Seriously, it's like watching a faucet drip. And just as irritating.
The drain is barely even working, so there's a hole in his neck and it's dripping down his clothes. They're bringing in Interventional Radiology to see if they have any ideas. To be fair, Dr. Elluru told us "2-10 days" to expect to be down here. 2-10? Really?!
All this and we have to be back probably the 6th to get the stitches out. I'm guessing not the 5th, since it's Labor Day.
We're still waiting on some of his bloodwork to see if he'll get that 4-5 hour infusion before we leave. I can't imagine we'll get out of here without it, he doesn't have a good track record in IGG land.
The highlight of my evening was chatting on facebook with a handful of moms that have kids with LM's. We decided we could do our own reality tv show, "The real housewives" if you will. :) We'll show them drama! Or, instead of "The Office" We could have "the Doctors Office". The spinoff could be "The Therapy Office". :)

We finally remembered to get Micah the balloon we kept meaning to, and it was a big hit!

College essentials?

Seriously, I went to college at the entirely wrong time. :)

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!

A pretty good day

Yesterday started out a little rough. The first few times we tried to sit him up he was essentially a little boy weeble. By mid afternoon he was out of bed playing on the (mat on the) floor. I tried to get pics but he wouldn't hold still long enough!

His head looks entirely different. Now the right side of his head is completely flat compared to his left. Basically all that is left is skin on bone. And of course, there's lots of swelling around that, but not in that spot. I'm hoping that as the swelling goes down it'll look more even. Doc things we'll have to inject some fat into that area to make it a little more even someday. I'm not sure Micah has any fat to spare!

We dared to ask what the parameters are for getting out of here... and it kind of depends who you ask. I've got the Nurse practicioner on the floor and the NP from clinic pushing for a hasty exit Friday. (Or at least to the Ronald McDonald House, which we got into, yay!). We'll have to be back at the 2 week mark to get stitches out, but it would be nice to go home for a week or week and a half in the meantime. They want to see his drainage decrease (it iddn't last time for 10 weeks and even that's probably because of the rapamycin!) so we'll probably go home with a drain. No big deal. We have yet to see if he will need another round of IVIG. As active as he was yesterday I might vote to do it overnight (I wonder if that's possible!) so he doesn't have to sit still for 5 hours. We're also supposed to be getting him to eat by mouth... ha! He barely does that anyway!

Well, I was up at 5:30 with Micah and figured I'd stay up til 6am rounds, where are they? First day they were at 6:30, yesterday set my alarm for 6:15 and they were here at 6.... Just can't win with this crazy ENT crowd!

Wednesday morning

His eyelid is still moving, he's just so swollen he can barely open it. He's overall very swollen, so it's hard to tell what it'll look like once it comes down (it'll probably take weeks to get a final look).
We're really here because of drainage and pain control. We'll come home with a drain almost inevitably. Even last time he was draining 4-5 ounces a day, so I'm not sure what their cut off will be this time (I don't think they know). It's frustrating to not know how long we'll be here! I'm hoping for leaving Friday, because we all know nothing happens around here on the weekend! If his pain is under control and his drainage is at acceptable levels, i don't see why we can't at least be at RMH (if we ever get in there, I guess... haven't heard a thing yet!)

About his surgery results, the doc thinks there's a chance the area in front of his ear might actually be more flat than the other side since they had to take out all the fat on that side. The difference is striking, really! I know it's hard to see in the picture.

It's probably dangerous..

It's probably dangerous to blog at 3 am, but oh well. They just gave him another round of meds and they have to draw blood in another hour, so why sleep? (We finally got the cocktail of drugs figured out!)
I was thinking about all of "this", and realized... Not in a million years would I have come up with this being the way I thought my life was going to turn out. Sure, as some of my friends joke, I seemed "ripe" to have a special needs kid (I've been working with SN kids since I was a kid!), but this???
It hit me today as I was walking back to the hotel, thinking that it was nice he was only in the ICU for less than a day. Most parents never see their child in the ICU, ever. Some parents don't even see their child in the hospital, ever.
I never would have thought things would be like this, but I find it oddly comforting. I know that God isn't sitting around wringing his hands,wondering what is going to happen next. He's not surprised, and he certainly isn't sitting around asking why. I don't mean all this in a terribly cliche way, I promise I hate Christianese more than most.
I'd like to know the why's of life, but I have to trust I will find out someday.

In the meantime, I'm praying they'll get his blood draw from his IV. They barely did last time. 4 am labs are the worst. :(

LOOOONNNNGG day.

I think last thing I posted was about switching rooms... Since the sedation wore off we have had a really hard time controlling his pain. Morphine every two hours would work for about 45 minutes, then we'd be back to square one. Now he's got a cocktail of morphine, codiene and tylenol and he's finally resting for the first time in 6 or 7 hours. His heart rate is 110, and most of the day- even asleep- was 140-170. Normally when he's asleep he's 80-100.
We have what appears to be a super nurse that's on top of things. Probably helps there's only like 4 kids on the unit that holds like 10! We had a great nurse last night too. You really want the good nurses at night... We can manage during the day.
I'm so beat today, and am really hoping to get more than 45 minute blocks of sleep tonight! Pain meds alone will come in around every two to three hours, not to mention the stupid 4am CBC and his antibiotic. Hopefully the nurse will combine, combine combine!

Champ!

It's hard to catch him with his eyes open, but the good news is that his right eyelid is functioning at least a little! He's extremely swollen but you can see a big difference already! As the swelling goes down over the next few days to few weeks, hopefully we'll see more and more progress!

On the way....

Things are looking good for us to be headed out of the ICU today. They started weaning him off his sedation at 4am (this isn't one of my favorite things to do... unhappy child!). Hopefully they'll decide they can pull some extra tubes/wires/etc and get us on a less critical floor.
He did alright overnight, although we had quite the time getting him the right temperature. Goldilocks he is NOT! Doesn't help when there's air practically blowing on on his face from the vent! BRRR!
Hopefully this morning I'll get to see his face without the dressings (if only temporarily) and figure out more about his eye situation.

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
--------------------------------------------------------------------------------------------------------------------------------------------------

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.

Vacation Fun :)

Surgery Tomorrow...

Surgery is tomorrow, 10:30am. I'll let you know the updates as we get them.

If you have facebook, you can hop on over and see some pictures from our mini vacation. It may take me awhile to get them all up!

Loving a miracle (re-post)

(I found this well written blog and thought it summed things up nicely. Of course, everyone is different but I think this is pretty spot on!)

Asked to Walk a Different Path


I am a special needs parent. It is not something I planned on being, but there it is, and there it will be. It has become part of who I am. Sometimes those on the outside looking in wonder what it is like to be a special needs parent. They shake their heads and say things like "You are amazing. I just don't know how you do it." Sometimes I just laugh, and say "I don't know how I do it either." No child comes with an instruction manual, and no parent needs one more than a special needs parent.

Personally, when things are at their worst, I put my head down and concentrate on just putting one foot in front of the other. Sometimes thinking further than that can be too overwhelming. Most of the time as special needs parents, we put on a brave face, and go out into the world with our heads held high. Many of us know as we step out the door, that despite their best efforts, our children will often fail to meet your expectations.We know we have no choice but to put our kids out there anyway, and hope you find it in you to be kind, and understanding to them. We pray you won't step on our children's tender little hearts when you let your disapproval show. We cross our fingers, and hope our kids will miss the stares, and the occasional rude comments. We pray you will treat our children like you would want to be treated, if the situation were reversed.

We love our children with all our hearts, and feel truly blessed by their presence in our lives. We aren't just saying that to make it sound better. It is the honest truth. Many of us have come to see that special needs kids have an important role to play in this world. Every time a special needs child is born, there is an opportunity for the true nature of humanity to be revealed. It is revealed in the way we treat that child. Their vulnerability brings out, and into focus both the best and the worst of us.

All parents are protective, and special needs parents are even more so, because we see how difficult it is for our kids as they try to make their way through a world built by typical people, for typical people. Many of us have nervously paced hospital waiting rooms, after entrusting our precious child's life into the hands of a surgeon. Some of us have sat at the bedside, unsure if our child would live though the night. Some of us have seen the cruelty people can inflict on those who are different. We have borne witness to the hurt in our children's eyes, when others have ignored, mistreated, or hurt them. We have prayed for miracles that sometimes did, and sometimes did not come. We have grieved for our children, for the extra difficulties they face, and for the injustice of their struggles.

Most of the time you can't see the wounds we carry on on hearts from all these things, but once in a while, something unexpectedly tears those wounds open, and our bravado slips a little. When something triggers those deep, raw emotions we have as parents of special needs kids, you might see though a crack in our demeanor. You might see the pain we try not to wear on our shirt sleeves, or the grief we experience, but are determined not to wallow in.We hold our breath, waiting to see if our kids will ever do the kinds of things you take for granted. Will my child ever sit up, crawl, take a single step, or run? Will they ever speak their first word, ask a question, or be able to say "I love you too?" Will they ever be able to eat by mouth, or be potty trained, much less graduate from high school, or ever hold a job? Is love, and marriage too much to hope for my child? We throw away the "What to Expect" books, and tearfully celebrate every tiny, yet miraculous milestone our children achieve. We do so without focusing on how late it came. We find ourselves staring in amazement at how easily a typical child does things, and wonder to ourselves how it is you miss the everyday miracles in your own life.


If you get on our bad side, and you might also find yourself on the wrong end of some righteous anger, the depth of which you do not want to explore.

We don't want, or need your pity, but your understanding would be nice. Instead of staring at my child, try saying hello. Instead of shaking your head and saying, "I don't know how you do it," offer your help. We'll likely turn you down, but will be grateful for the offer.

Special needs parents are just like all parents, except we usually have to work harder, go further, and worry more. We have all the same hopes and fears for our children that everyone has, but for us, the hope is harder to come by, and what we fear is sometimes more more likely to come to pass. We did not chose this very challenging path, but giving up is just not an option. We negotiate the best we can through the potential pit falls of denial, self pity, anger, ignorance, discrimination, and our sometimes shaken faith. We have had to come to terms with the challenges we face. After all, what other choice did we have?

We hope you won't judge us too harshly if we stumble, if you get a glimpse of a short lived pity party, or if our grief occasionally slips out of our eyes and down our face. If we perceive things differently than you do, it is because our eyes that have seen things we didn't want to, our ears have heard the most difficult of news, our hearts have ached over things we could not change, our faith has been painfully stretched, and our feet have had to walk the extra mile. Those experiences tend to change ones perspective. You think we are brave. We feel terrified. You think we are strong. We feel weak. You think we are tireless. We push ourselves beyond exhaustion. You wonder how do we do it. We are not always sure we can. We just do what anyone would do, the best we can. We want you to understand, for the most part, we are no different from you. We are exactly who you would be, if only you walked in our shoes. We would ask that you not judge us too harshly, because we are the same as you, only we've been asked to walk a different path.

To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents: "Loving a Miracle - Special Parents Supporting Each Other."https://www.facebook.com/groups/325329864348?ap=1

(You can check out this awesome mom at www.lovingamiracle.blogspot.com )

Managing expectations.

I don't know why I always feel the need to do this, but I do. I just want to explain a little about Micah's surgery and what to expect. I'll use these pictures as an example. The top one (the orange shirt) was the day before his last surgery in March. The bottom picture was taken in the last week. Imagine a line coming straight down fromt he bottom of his ear, and take everything back towards his spine. That's what they worked on last surgery. Does it look better? Surely. Is it fixed? Not a chance.

The goal of the next surgery is to clean up the "third" they did last time, and do the top and bottom "third" as well (by his temple and his airway). Overall, I feel like I'm pretty realistic about the outcome of this surgery and his disease in general. It's a nasty ugly disease, and for the area of the body it is, it's a pretty complicated case. (It can be more severe if it's in other parts of the body). Micah will probably come home with at least a drain. So, since his birthday is 9 days after surgery,and I don't want to delay his birthday party too much, I am just going to make this party family only. He doesn't get it yet, so it's not too bad.

We've been busy the last few weeks rearranging schedules and packing. Ever since I was a kid going to summer camp, I'll start packing weeks in advance... packing and unpacking. Now imagine throwing in a child with tons of medical supplies! I actually just find it funny anymore. I'll still end up forgetting something, no matter how hard I try.

Anyways, I guess the long and short is don't expect a homerun with this surgery, and you won't be disappointed.

And just for giggles.... Mousetrap anyone? Look, it even looks like he's eating the piece of cheese. Silly kid.

IGG- You can't catch me!

His IGG is good enough! Hooray!

He loves him some chickens!

We've been doing all the necessary junk for surgery this week. Rescheduling nursing hours, his 3 therapies (and delaying his new one!) trying to figure out the pre surgery blood work (which isn't as easy as normal on a monday morning surgery!). We got his last round of blood work in a super short time span, so now we're waiting to hear the official word from the hematologist. Is IGG is on the outs again, and the question is whether it's too much on the outs that it needs replaced before surgery ( T minus 15 days and counting). The other million dollar question is if we can do it here locally, and save ourselves a trip. As far as I know they would let us if it's possible,since I don't think they need us down for anything else. (Please note the "as far as I know" and "I think").

We had planned on suprising my mother in law with a little mini trip to Brown County for her birthday which is coming up soon. The trip was going to be in October, but we rescheduled it when we found out his surgery was in October... which of course it's not anymore. And, of course, we rescheduled it for the weekend before surgery. So, nuts to everyone, we're going anyway. I figure we'll be half way down there, and already packed. God bless the washing machines available to us in Cincinnati. We'll be in Brown County the Friday, Saturday and Sunday before surgery. Works like a charm, minus all the exposure to germs and such. At least it's summer, right?

We've been packing in the fun the last week or two before we try to keep him somewhat away from germs. We went to the neighbors last night for movie night. They have acquired chickens since then and boy.. those chickens are just great. They are funny and entertaining and just plain great as you can see from this picture. But the goats, oh the goats are so giggle-worthy. He gets the biggest kick out of them. Who needs the zoo when you have a farm next door?


(That took days to post, blogger was having a hissy fit!) 13 days til surgery!