28 November 2013

25 November 2013

Recovery is going well

Sorry for the lack of posts.  I've been back to work and most of my weekend was spent putting up Christmas lights outside since we were in Dallas the week before.  Isaiah loves them so much its my excuse to go a bit crazy.  I'm not to Clark Griswold level yet and I don't have them programmed to music or anything, just a bunch of lights.  I think I put up around 50 strings over the weekend which totals something in the 2,500 - 3,000 range of lights.  Last year a family down the block from us said its like Christmas exploded at out house.  There's another 10-20 strings I need to repair, but anyways, you're not here to read my excuses for not posting...

  Isaiah is continuing to do well.  His swelling is down considerably, but there's still some in the center of his forehead and around his left eye.  The bruising at the bridge of his nose is gone and we're starting to get a good feel how his new face will end up looking.  One thing has us a bit worried though.  His right eye seems open quite a bit more than his left.  It may just be the swelling at the left eye hasn't gone down, but the upper corner of the right eye seems higher than the left and there just seems to be a lot more white of the eye visible now on the right side.  Hopefully things will even out a bit more over the coming weeks, but it worries me and Rachel.  He just doesn't need one more thing that kids can poke fun at him with. I'd post a pic to show what I mean, but it's late and he's sleeping. 

  We didn't end up going to church on Sunday.  Rachel wasn't comfortable yet letting him run free in Bloom.  Technically he's not supposed to run or jump for 2 weeks after the surgery and while we love and trust the caregivers in Bloom at Passion City we know our son.  If he wants to run, he'll run, and its hard to wrangle him especially with 15 other kids in the room.  He just feeds off the chaos sometimes!  Plus his energy level is so schizophrenic right now.  One minute he's hyper, the next he's curled up on the couch napping.  Rachel said he made it fully through the day today without a nap, but he did spend a good amount of time on the couch under a blanket trying to keep warm during this cold snap.  I'd probably be curled up myself if I didn't have to go to work.  We moved to the South to get away from the cold in Minnesota we lived with for over a decade!

  The other thing we didn't expect is that his voice has changed.  Not a ton, but its noticeable enough to us.  He's a bit more nasal sounding.  At first we thought it was due to the swelling, but we're pretty sure the swelling is gone at his nose.  He's still got the cute intonation in his voice, but its just different.  Its one of those things that most people wouldn't probably notice, but we totally do since we're around him all the time.  It was especially noticeable when listening to videos taken only a month or so ago.

I'll try to get some good photos and maybe a video or two up here in the next couple days and will probably get to some more updates over the holiday weekend.  Thanks for sticking with us!  B

19 November 2013

Home Day 1

Man have we got one crabby little kiddo.  I mean I know I'd be crabby if I had just spent 12.5 hrs in the car yesterday and my head still weighs more than normal.  He does have all his spirit back though.  He wants to do everything himself which is great, but also freaks Rachel and me out. The top heaviness makes him a little more uncoordinated than normal and even just transitions from laying down to sitting up can result in a pendulum like swing back down to the other side of the couch or bed.  His energy level is still pretty sapped though so we kind of do one thing of playing or a bath and rest on the couch for a while and watch some of the Chuggington DVD's he got as a present.  He's still sleeping quite a bit, but we make sure he keeps rotating to the swelling doesn't build up on one side.  He was also super excited to play with the rocket my cousin Angela Lowe and her husband Michael gave him in the hospital.  We haven't shot it off outside yet, but he's been flying to foam rocket part all around the den.

Today is going to be kind of a chill day trying to figure out what exactly we need for the week.  I slept in a bit to catch up on much needed sleep and am heading back to work tomorrow morning. Rachel's going to go to the store for some essentials and if he's got the energy we're going to try to grab a late lunch at our favorite hot dog place, Barker's Red Hots.  He absolutely loves that place! 

18 November 2013

Home at last!

 It's late, but we made it home safe and sound!  Isaiah is cuddled up on his favorite spot on the couch while Mom and Dad unpack the car.

Halfway Home. Isaiah's favorite stop

Isaiah's favorite rest stop in Vicksburg, MS.  Two bridges, one of them a train bridge. A river, and a river boat all seen from one spot atop a bluff.  I think we stop here every trip no matter what.  Its at roughly the halfway point distance wise from home.  Even if we stay overnight in Vicksburg we end up stopping here so he can see the bridges!

Back seat blogging

Hoping this works on my iPhone. I apologize in advance for punctuation and spelling errors.

Rachel's been giving me a break from driving after we passed Shreveport and we'll probably switch when we get to Vicksburg. Isaiah has been doing great so far in the car. He's definitely got his spirit back and is as stubborn as ever!  We've been having to bribe him to take his meds and as a precaution have been giving him Zofran to keep the nausea at bay. Other than that his swelling is continuing to go down but he's still pretty top heavy.

A couple people have asked if there's anything they can help with once were home. We're surprised at how well he's doing so we think maybe just help with meals. We're supposed to keep close watch on him this week so quick heat up casseroles or fast food or pizza delivery place gift cards would be great so we don't have to cook too much. Other than that really continued prayers that he doesn't develop an infection!


One state down, 4 to go

Just crossed into Louisiana!

Waffle Time!

He got his waffle!  That's all he wanted for dinner last night, but he settled for french fries.  We're checking out of the Residence Inn and heading home today.  We're trying to drive it home in one fell swoop, but Isaiah is doing okay so we may stop off someplace on the way.  We'll probably upload some pics on the road from out phone.  Thanks for your continued prayers!

17 November 2013

We're Out!

Despite all the throw up last night he was able to be discharged right around lunch today.  We got back to the hotel and have been hanging out on the floor most of the afternoon.  Isaiah is already doing much better.  I had to run out for some more Childrens Ibuprofen since we didn't realize the bottle we brought was expired.  I came back with lunch for Rachel and I and as soon as he smelled food he said he was hungry.  He had some Teddy Grahams and tortilla chips and has been able to keep all his fluids and med down.  He's also more back to his old self building lego towers, playing with his cars and watching monorail and roller coaster videos on his iPad.  He's still a bit of a wobbly walker.  I'd be too if my head weighed a bunch more than normal and the swelling is still affecting his vision a bit, but its getting better every minute. 

Thats it for now.  If all keeps up like this we'll be on the road home in the morning.

Day 3 morning update

Well that was a fun evening. We knew it would be rough, but at least it wasn't as bad as we had steeled ourselves up for.  Basically he wasn't keeping much down and he went back on the IV for fluids in the middle of the night.  Luckily the peak of his swelling seems to have been overnight when his eyes are supposed to be closed so we pretty blessed to avoid much of the panic and stress that goes with not seeing.  There was a couple of times when he was up vomiting that he would ask us to open his eyes, but he was sleepy enough that once we cleaned him back up and put his music on he'd go right back to sleep. 

I went back to the hotel around 6:30 this morning to shower and grab breakfast and a few other things we needed.  Isaiah woke up soon after I got back and immediately wanted a tour around the unit again to go see Alvin and the Chipmunks, Thomas, and Mickey.  We tried to get him to walk around a bunch to help get things moving in his body.  It's been working and his swelling has come down so both eyes are open at least a little bit this morning.  He got his first bath in a few days and was not happy about it, but at least we got the surgery smell off of him.  His incision is looking really good. We had a little oozing last night, but not much.  He's not quite back to his normal self, but we can tell his energy level is up.  God willing we won't have too bad of a drive back to Atlanta. 

16 November 2013

Day 2 Updates

Last update 8pm

9:00AM  We got back into the PICU about an hr ago after getting one last night of good sleep since minimally one of us needs to be with him overnight when he's moved to the normal peds floor.  As you can see by the picture his swelling is up some, but he's still able to see somewhat.  Mostly out of his left eye.  The swelling will probably peak sometime tonight, but so far it doesn't seem as bad as we remember.  Famous last words, right?  Right now he's fairly lucid, but still very very tired.  He's been talking and answering questions.  He asked for his new Thomas pillow pet his teacher Miss Brittany got him on tuesday and we're currently watching the original Love Bug movie which he absolutely loves.  His A-line (arterial line) was taken out at shift change this morning and we're starting clear fluids and should be moving to the floor as soon as Dr. F swings by to write up the orders if all looks good to him and so long if there's a bed available.

11:30 AM We've moved to the normal floor.  He's got a fever of 102 right now but he still wanted a wagon ride around the new floor.  Unfortunately the playroom is closed all weekend long so we'll have to bring in some of his toys to get him active and the fluid moving in his head.  He's still swelling up, but managing well. If we keep getting him up and around every so often it'll help the fluid level remain lower than if he was just laying in bed all day.  He's off all IV fluids now but he's still not super keen on drinking clear fluids yet and we haven't tried solids at all yet.  My mom flew in from Florida and is hanging out in the room with us.  Its nice to have a familiar face around and we appreciate the company.

 3:30 PM  Isaiah is being his stubborn old self and not really eating or drinking anything.  We've forced a little juice and gatorade but not very much  Swelling is still going up.  His right eye is just about sealed shut, but he keeps a good sliver open on his left eye to watch Curious George.  We've gone on a number of wagon rides around the floor and found a number of fun things.  There's a Sorcerer Mickey Statue, A large set of Alvin, Simon and Theodore as well as a great painting with both Thomas and a bunch of the Chuggington trains.  We had to stop and name them all.  Other than that, not much to report.  Just trying to get him to drink more so we can maybe get out of the hospital tomorrow.

8:00 PM   So things could be going better and they could be going worse.  We were able to get him to drink a bunch of Gatorade, and then shortly after 6 when we started trying to feed him some solids, he threw it all up.  Since then we've maybe gotten 4 grapes into him and he won't touch anything to drink.  After his stomach calmed we went for a wagon ride around the unit again and got him to do some walking just to keep him somewhat active.  We must've done too good of a job because he was out like a light before we made it back to the room in the wagon.  he's been asleep since 7 and it's making us have a hard time telling if his eyes are fulled swelled shut or he's just sleeping.  They were close either way as he was tipping his head to extreme angles just to see out the slit he had left  his left eye.   His fever of earlier today is back down under 100 and other than the vomit and not wanting to take in any fluids he's doing good.

  Both Rachel and I are probably staying over in the room tonight since we have a 'nice' double bed pull out in the room.  It's big for hospital standards but extremely uncomfortable.  I'm so glad we went back to the hotel last night because today was almost as exhausting as yesterday was.  That's it for tonight.  

15 November 2013

In the PICU

Updated 2:30 - Just wanted to do a real quick update. Surgery went great.  Dr. Fearon was very happy with what they were able to get with his skull.  They could tell space was really starting  to get tight around his brain and they were able to improve things up there for him greatly.  He's in the Pediatric ICU and mostly still sleeping everything off.  Swelling isn't too bad yet, but we know it'll be coming.  He had a little work done on the bridge of his nose to bring that forward a bit which will help protect his eyes and also make his forehead advancement less noticeable.  Most people might not notice, but I could see it right away.

One thing that's always hard to get used to is that our kiddos faces change after every surgery.  You sometimes never know what they're going to end up looking like.  We're just happy he still has a little bit of a crooked nose and that same smirky smile will be back once the swelling goes away.  This one isn't even the big changer either.  Hopefully when he's about 8 or 9 he'll have the mid face advancement which will pull from his upper jaw to his eyelids forward.  That part of his face grows slower and they'll actually over correct it in the surgery to allow him to grow into his face.

We're still waiting for Dr. Fearon to swing back by again as we missed him earlier when the pharmacy tech was in verifying meds.

Thank you everyone for the thoughts and prayers during his surgery.  Please continue to lift Isaiah up during his recovery stage.  Rachel and I may actually take the night off since he'll be staying in the PICU and get one last night of good sleep tonight before the real fun begins once he's on the regular floor or we're on our way home.  We want to check with Dr. Fearon first, but he usually wants the parents to go get some rest which we'll probably do after meeting the night nurse.

Surgery Updates

Scroll down for updates as they're available

8:15 AM Well a little more than a half hour ago they took Isaiah back to finish prep for the surgery.  The surgery itself only takes around 2 hours but he'll be asleep for 4-5 hours.  The first hour is prep, parting his hair and clipping it back out of the way, cleaning the site, etc.  Your continual thoughts and prayers are appreciated.

One thing we learned today is how they harvest his own bone for the surgery which we weren't too clear on before, or if we were, we had forgotten over the past four years.  Apparently the skull has typically three layers sort of like an oreo cookie.  There are two outer layers of bone with, for the lack of a better term, creme-like center layer.  They'll take out portions of his skull and actually split it like an oreo, doubling the amount of bone they have to work with to put back in place.  As time goes by that split bone will grow back the additional layers of the original bone.  Even though we sometimes feel like this is old hat, we learn something new every time.

10:00 AM  Rachel just called into the OR for an update and alls going well.  Neuro is about to start their portion of work and according to Ann the OR nurse "the skin is all off"  A little TMI, but a bit comical how casual it was mentioned on the call.

10:30 AM   Dr. Price (neuro) is in the middle of the Craniectomy and all is progressing well.

11:00 AM All is still going well. No specific update given other than they estimate being done around 12:30.

14 November 2013

Surgery Primer - Skip if you're Squeamish

DISCLAIMER - Skip this post if you're squeamish.  I realized not everyone knows exactly what Isaiah is having done so I thought I'd use this post to describe it quickly and its a bit graphic.

Isaiah is going to have what they call an Anterior Cranial Vault with a number of other small procedures around his nose and eyes.  Essentially they are going to reopen the incision scar Isaiah has from ear to ear from his previous surgeries and rearrange the bones in the front of his skull to give the frontal lobe of his brain more room to grow.  It's a bit of a puzzle like process where they cut out certain areas and put them back in a different place and the neurosurgeon helps to stimulate the brain to grow in the direction of the area they are opening up.  In order to do this they stitch his eyelids shut and sort of peel the skin of his face down. While open he'll get some bone grafts at the bridge of his nose to bring it out further and also have the corners of his eye sockets brought upward slightly to counter the drooping eyes that occur with Apert kiddos as they grow.  The stitches on the eye lids help everything go back together a little easier in the end and also help with keeping things in place as his head swells up during the healing process, but it also means he'll essentially be blinded for up to a week until the sutures dissolve.

The height of his swelling should be sometime Saturday afternoon or evening.  The amount of fluid up there is a bit crazy.  His last surgery his head nearly doubled in size and you could audibly hear the fluid sloshing around when we moved him or he changed his position.  The best thing we can compare it to is like the sound of a waterbed when you first lay in it.  Its gross but an amazing example of how God designed our bodies to protect and heal themselves.  The fluid creates a cushion of sorts to protect the brain and bones as they heal.  As crazy as it sounds, if all goes well, we should be discharged from the hospital as soon as Sunday afternoon and we'll be on our way back home to Marietta the next day.

Big Info Dump: Pre-Op and more...

Sorry this might get a bit rambly.  It's been a long day and our stress levels have been so high lately I'm a bit punchy even though its only 8pm here.

We made it through all the pre-op appointments today and even had a little fun.  We started off the morning at Children's Craniofacial Center's offices which are right here near the hospital in Dallas.  We visited for a little while with Char, Jill, and Annie in the office and found out that Jill's family has history in my hometown of Racine, WI and that she's from the Milwaukee area originally like Mom and Dad.  Isaiah got another stuffed animal, this time a kangaroo from Kohl's Care.  I'm pretty sure that's got to put him over the 100 mark on stuffed animals, or at least it feels like it.

His first appointment was at 11 with imaging and he did pretty well sitting for his 'before' pictures.  They document his head in general, but mainly his forehead, and they took a number of pictures of his hands and feet as reference for how they're growing.  It's almost like the medical version of school pictures for his files and will probably be pretty interesting to look at in a few years.

Next we had to register with the hospital which went much smoother than the first time we were here four years ago.  We were not asked the dreaded question of how we would be paying for our $10,000 deductible. Its amazing what different insurance that has the hospital in-network and all of Rachel's work getting the single case agreements set up with all the physicians has done.  It definitely nice to have one less looming thing to worry about and its partially why we made sure to do the surgery this calendar year while we knew what our insurance plan covered.

After that we had the normal medical history info gather, visit with child life in the mock Operating Room which may have freaked out Isaiah more than it calmed him, and then the dreaded blood work which did not go so great.  His level of hospital anxiety is on high alert right now.  If you know us from church at Passion City and ever see Isaiah running around with his bloom tag on his pants belt loop rather than his wrist the anxiety has much to do with it.  Here we had to put it on his ankle since it can't be on a piece of clothing that can come off and the second it goes on he starts going 'take it off' and the waterworks start.  He did okay with height and weight, but vitals started getting interesting.  They needed to get a fair amount of blood from him so they put numbing creme on both arms so we were on distraction duty for 30 mins to try to keep him from peeling the bandages off before it was done working.  He's fully worked up at this point, screaming and crying and they haven't taken a drop a blood yet. We calmed him down by watching some roller coaster videos on daddy's phone and that worked for a little while at least.  When time came for the blood to be drawn you'd think they were cutting the kid open with the level of screaming and crying but it was over soon enough and he calmed down when I told him we'd go see the fountains since we had to run by security and get a parking pass for the week.

  We then grabbed a quick lunch and then came back to the hospital for his appointment with Dr Fearon.  He's happy to not see any signs of Chiari (brain growing down the spinal chord cavity) on Isaiah's MRI and the plan of attack for surgery remains the same.  Here's a nice little snap shot of Isaiah with Dr. F.  If all goes well with this surgery we won't need another major cranio surgery until he's 8 or 9 when they do the big midface advancement surgery.

After that we went over to North Park Mall to burn off some energy and got Isaiah some planes from the Disney store for being a good boy most of the day.  We then all had our first ever In-N-Out Burgers to cap off the day.

Tonight will be a bit rough for us, but Isaiah is strangely calm right now.  Food cut off is 11:30 tonight and clear liquid cutoff is 4:30 in the morning.  We report to the hospital at 6am tomorrow.

We're very thankful for everyone's prayers and know that God is going to be with Isaiah through it all.

13 November 2013

Home away from home

Just time for a quick update.  We've made it to our home away from home, the Residence Inn Park Central.  We've probably spent more nights here in the last 5 years than any other hotel.  The drive was mostly uneventful, which is good.  I worked most of the day yesterday and we left Atlanta last night and stayed over at my cousin Walter's house in Tuscaloosa, finally getting to meet his fiance Jess.  It was much too short of a visit, but we're grateful for their hospitality.  We drove the rest of the way to Dallas today and are slowly getting settled into the hotel for the night.  Isaiah is all tucked in and had his story read already so I think that's my cue to get off the lap top and get some much needed sleep myself, while we still can.

Halfway to Dallas

11 November 2013

Insurance Update / Prayers

 I lifted this from Rachel's Facebook, but thought those of you that follow us here would like to know as well.
    "Thank you to all my prayer warriors who have been praying about our insurance stuff for Isaiah's surgery. I got word today that all our providers have successfully set up agreements with our insurance company to have their services paid as 'in network' for the surgery. Yay! Now we just have to make it through the next week"
 While it doesn't mean everything is covered 100% it is a great relief to us that things will go through at the in network rate or minimally at a lower pre-negotiated rate than us being stuck with the high out of network rates.
We appreciate everyone's prayers and know everyone will be praying for Isaiah on the 15th and during his recovery.  We have also been asking people to lift up the surgical team of doctors and nurses that will be caring for Isaiah at Medical City Hospital in Dallas.  Especially Dr. Fearon, his craniofacial surgeon and Dr. Price, his neurosurgeon.  Rachel and I are also asking for prayers to give us the mental and emotional strength to make it through this week and his recovery.
I know I'll personally be latched on to a passage our church studied in depth a little more than a year ago and is one that I've always shared with fellow cranio families going through tough times be it surgeries or other things.  It's always with me in my phone and I may need to just print it out and put it in my pocket as a good reminder this week.
Isaiah 41:10 (NASB) "Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand."



07 November 2013

Exhausted and we haven't even started

This week has been exhausting.  Rachel and I are both pretty spent emotionally preparing for this and Isaiah is mostly blissfully unaware.  Every time we bring up we're going to go to the hospital he says something to the effect of "I no go to hospital, I ok!  Maybe tomorrow."  His 'maybe tomorrow' is his polite way of saying no to everything.  We also have the added fun on my Mom and sister coming down for the weekend to celebrate my Mom's XXth birthday.  I'll leave it blank, but lets just say its a milestone birthday.  We've been planning on this weekend for months.  Even before the surgery date was set.  The stress of tidying up the house and having to prep for the trip 3 full days early has gotten to us a bit.  At least its family coming and house doesn't have to be spotless, but it's been a bunch to juggle. Plus if you aren't friends with us on facebook and haven't heard already we've just announced that Rachel's pregnant with a little brother or sister for Isaiah that is due in early May so she's simultaneously way more emotional and exhausted than I can ever imagine right now.

In other news I thought I'd resurrect my YouTube account and start putting up some videos here.  I'll start with a little sample of his excitement around our last trip to Disney over Labor Day weekend.  He loves that place to death and it shows!  My favorite part is about 1:40 in where he lists all the rides he's going to ride.