29 March 2017

Recovery Day 5 pm

Pretty good day all things considered.  We ate some of our first solids, and he's been steadily drinking milk from a hair dye bottle.  He won't do pediasure in the bottles yet so we've still kept the feeding tube in yet to do meds and supplemental feedings of pediasure.   Its getting better but we need him to east more on his own through his mouth.

The feeding tube is not something we were prepared for dealing with, but its making the pain meds way easier to do right now since he usually gags and throws up from the sweetness of the children's motrin/tylenols.  That should hopefully make the trip home a little easier tomorrow.
He likes to hold the front bar when sleeping

He has been sleeping a ton as I'm sure his body is jsut beat down trying to recover, but really doesn't seem to be in much pain at all and his swelling almost seems negligible compared to the Cranial Vault Reconstructions (CVR).  He is having difficulty somewhat getting comfy laying in bed on his sides or laying down to watch his iPad.  He's already used the front bar of the RED to hold up his iPad so that's one thing he does 'like' about it.  I've noticed him holding on to the front vertical bar while sleeping a few times.  He used to throw his hands or arm across his eyes, so maybe this is as close as he can get right now,

Tonight my cousin Angela came to visit.  She's actually a pediatrician here in Plano, TX and we've stayed with her in the past when we just have appointments, but her house is just a bit too far for when we have the major surgeries, especially with Dallas' upredictable traffic that's so similar to Atlanta.  Its always good to see family and catch up. We also met the Clarks who are another Apert family from Ohio.  Their daughter Haylee is supposed to be having the same procedure done on Thursday, but they've run into a problem with how their insurance initially coded something and are in jeopardy of having to delay the surgery.  Please send some prayers their way that everything gets resolved in time for the surgery to take place this week and that her surgery and recovery go as well as Isaiah's has so far.

Lastly I have to send out a big thank you to my sister Rebecca for taking time off and flying down from Minnesota to help us with the baby and everything while we're preoccupied with Isaiah.  Its been wonderful having family here the whole time, and she's done so much.  Considering all the typical stupid and mean things I did as a big brother growing up its great to know we can rely on each other for help when we need it.

28 March 2017

Recovery Day 5 am

We got discharged from the hospital a little after 5 pm yesterday. He's doing pretty good. I'll try to get a longer update in when I have a chance but it's a bunch more work on our own!  We're re still tube feeding but we started some soft solids today. Some syrup soaked Belgian waffle some tiny cut up grapes. This is probably going to be the biggest hurdle early on here. He's not acting like he's in much pain and he's getting more used to the halo. He's been a bit more talkative but still mostly one or two answers. Here's a little video of him this morning. Enjoy!


27 March 2017

Recovery Day 4

Look at that cherubic face!
The rest of yesterday went pretty well.  We moved out of the PICU in early afternoon and have been on the regular floor since then.  He's been up and walking more and healing pretty well.  Pain has been managed well too he just wants the RED off his head already.  All in all he's recovering very well and we'll probably be discharged today.

We still have some challenges though.  Feeding is still an issue.  He still has the ng tube in and oral feeding is not going the greatest.  He can do juice and water somewhat but needs to be reclined not to drool.  The feeding tube freaks Rachel out a bit, but we need to keep it in until he can take enough by mouth regularly and not throw up.

The other issue we have is that his stools are so loose every time he passes gas he has an accident.  We've gotten better this morning about going to the bathroom, but we've had 4 such accidents the last day and it doesn't bode well for the 12 hr drive back to Atlanta since I can't pull over every time he needs to pass gas.  We've bought big kid overnight pull-ups for kids that have bedwetting issues so I joke we now have three kids in diapers, but hopefully this gets under control soon and gets better once we get him on soft solids.

Trying to drink some water though a dye bottle
The biggest issue we have is that he now thinks he did something wrong and that the RED is punishment for him.  He's seen himself in the bathroom mirror a couple of times with little reaction.  He kind of stopped and stared for a second and then kept washing his hands, but I think the bar in his face and fact he can't lay on his belly like he normally does is more of the issue.  We've tried to reinforce he hasn't done anything wrong and that this is all to help his breathing, his ears, and make him even more handsome.  We think its just him hyperfocusing on it and the autism tendencies taking over but its so hard.  We've asked other Apert and similar cranio families for some pics of their kids in the RED having fun to show him that lots of other kids have had this and they're not in trouble.

We'll be staying at least a day in the hotel once were discharged and then probably hit the road back to Atlanta early and try to do it all in one day just to get home.  Everyone's prayers are still greatly appreciated.


Had to go visit the Chipmunks on one of our walks

26 March 2017

Recovery: Day 3 am

Another night in the PICU, hopefully moving to the floor later this morning if all goes well.  He's got a feeding tube in his nose that they've been doing med and feedings through since the IV failed yesterday afternoon.  His hand is still a bit swollen, but not nearly as bad as before.  We've gotten up to use the bathroom a couple times since they removed the foley.  As Olaf says 'All good things, all good things'.  Rachel stayed the night again as I've been close to losing it emotionally the last day or so.  I felt like there was too much movement in his midface when he was scrunching his nose with the nasal trumpets in.  He would scrunch and his whole midface would move like 3/4 of an inch and make this crunching / clicking noise.  I first thought it was the sound of his bones hitting, but realized later it was the dental splint.  It just gave me the shivers and I'd start flapping.  I just don't do well with blood and all this stuff but surgeries like this are slowly steeling me up.  I was up crying and praying much of the night and know that everyone else's prayers are lifting him up as well.

This morning when I got into the PICU he was laying on his side and has been pretty responsive and talkative.  He'll sit up on his own and tried to get out of bed on his own really quickly but he's still getting used to the new center of gravity so it worrried us some when he snaps himself up.  We went for another quick walk around about half of the PICU and when we got back he tried to jump back into the bed face first.  I about had a heart attack, but it shows he's getting a bit more comfortable about the RED being on his face.  We just went for a PICU tour in the wagon and it sounds like they're readying a room on the floor for him once we get the all clear from the doc.
Energetic enough to play iPad

25 March 2017

Prayers in the PICU

Little man is in a ton of pain right now so prayers are still very much  appreciated.   As he's more and more aware of everything around him and on him and his cries of pain and frustration are getting louder and more frequent. It kills me to see him like this and I wish I could take it away.

He grunted in anger at Dr Fearon when he saw him before lunch when he showed us how to turn the screws on the RED. Apparently he's done really well since he didn't need a transfusion and around me 75% of kiddos getting this surgery need one. He's already gotten up and walked about a quarter of the PICU and we've started feeds through a feeding tube.

Right after they took his arterial line out his other iv started failing and his left arm and hand swelled up and turned purple. They had to remove the iv and his hand is back to its normal color but we're still waiting for the fluid in his arms to dissipate but it's definitely getting better slowly.

Everything went so well yesterday but we knew there would be days like this.

Day 2: Recovery

Last night I went back to the hotel with Aunt Rebecca and Elena while Rachel stayed in the PICU with Isaiah. We're trying to rotate so one of us gets a good nights sleep at least.  He was awake more overnight.  Apparently Rachel said there was one time he woke up long enough to say 'My head hurts' and went promptly back to sleep.  Mostly he was up briefly to moan or whimper since I can't even imagine the pain he's probably in.  There was a steady stream of Minion movies, Wall-E, and other disney flicks on the tv all night long.

The orange things in his nose are the nasal trumpet
 He also apparently coughed out a pretty big blood clot about the size of a golf ball that required a good amount of clean up.  Not fun sounding, but its good he was able to cough it out since its not something they probably could have suctioned out.  After that his airways were more open and his blood oxygen levels stayed much higher.  He's been on some good pain meds too, but hasn't needed Precedex yet.

He still has nasal trumpets in and gets suctioned pretty regularly to get all the fluids out of his nose, mouth and throat as there's still a ton of drainage and what not with all they've done in that area.  He really doesn't like the nasal trumpets and has been scrunching his nose repeatedly , but they're needed to keep his nasal passages open with the swelling and for suction until the oozing stops.

This morning he's been even more aware of everything and has been able to move around a bit.  We got up out of bed and took about 4 steps bearing his own weight and moved to a chair.  He's still getting used to the added weight of the RED device but is able to hold his head up on his own for the short bits of time we've tried so far.  The device is fairly light, but I know when I get new glasses the ounce or so difference is weird for a while and this is way more than an ounce of difference.

All in all recovery is going good. We're waiting to see Dr. Fearon and do the first turn of the screws and figure out when we move to the regular pediatric floor.
In the chair watching Frozen

24 March 2017

Recovering in the PICU

We're in the PICU with him now.  He's not waking up much and we need to make sure he does more soon.  He's got nasal trumpets, a feeding tube, suction tubes in his mouth and all sorts of other goodness going on right now in addition to the RED device  (the big purple thing on his face)

I'm going to try to put all the pics behind the jump, so skip over if you're a little squeamish. If you want to see pics click 'read more'

Surgery Day Log

We'll be updating this post as the day goes on so check back every hr or so.  We're at Medical City Hospital in Dallas, TX.

Main Craniofacial / Plastic Surgeon: Dr. Jeffrey Fearon
ENT:  Dr. Brian Peters

Our last look at this guys little face like this :(

6:00 - at the hospital waiting to be taken to surgery prep

7:00 - most of the doctors have been by to visit quick.  Isaiah got his 'goofy juice' to help him relax and with the separation.  We've got some funny video of him trying to play angry birds go while 'under the influence' 

7:40 - They took him back to the surgery room

8:00 - Dr Peters came out to say his ear tube removal went great - He only had  the typical 10% holes in his ear drums.  We'll follow up with ENT in Atlanta and if we need new tubes they'll do it here when he gets the RED taken off.  Basically this was a piggyback procedure since he was already going to be under and its such a quick surgery. 

9:30 - They're done with the prep and have just begun his main surgery - the midface advacement.

10:15 - They just finished the top approach and are about to start on the bottom.

11:00 - They're closing already but still need to attach the RED.  Going well so far.  Thank you for everyone's continued prayers.  While still sad about his face changing, we've had a real sense of peace around the surgery itself today.

11:30 - We grabbed a quick bite to eat and have relocated up to the PICU waiting room.  Still working on getting the RED on his head, still about 45 minutes until they bring him up here.    

12:30 - He's out and getting settled in the PICU.  We haven't seen him yet but Dr. Fearon said everything went very smoothly, but warned us there's 'a lot of traffic going on up there'.  He's going to have a bunch of tubes and wires and what not up there.  We should be able to see him in about 20-30 minutes.  I'll start a new post and put any surgical pics behind a page jump once we are in with him.


Thank you everyone for your continued prayers and support.  We know everyone has been lifting Isaiah, his doctors and nurses and us all up in prayer. 

23 March 2017

So far, so so

Hanging out by the fountain in the lobby
The trip out here was pretty uneventful.  Elena's not as good of traveler yet as Isaiah and Christopher were at this age, but we'll get her there!

Isaiah and Dr. Chan
Anyways today was the marathon of pre-operative appointments.  We got to eat our Texas shaped waffles for breakfast this morning and had to be at the hospital by 8:45.  Isaiah got to be a supermodel and get his pictures taken by Mr. Max.  I wasn't in there to see if he did the Blue Steel Zoolander look, but it is his go to.  Then we got to see the new Anthropologist Dr. Chan who took all sorts of measurements of Isaiah's face and skull.  He was pretty happy yet in there since there were Minion stickers everywhere.

After that it started going a bit downhill.  By this point he was already getting tired of being traipsed around and wanted to go back to the hotel, but we had to do blood draws/labs for the surgery.  He's a notoriously hard stick and it didn't go well.  They needed 2 lab techs, the attending nurse, child life, and Rachel to get it done.  3 sticks a ton of screaming, but in the end they got what they needed.  Needless to say he wasn't happy and we still had X-rays and appointments with Dr Fearon, his cranio surgeon, and Dr. Peters, our Dallas ENT.

Isaiah and Dr. Fearon
He got into a pretty big autistic 'loop' for awhile until we were done with X-rays but luckily we had some legos that he could build while waiting to see Dr. Fearon.  He got to see the RED device and got his picture and we got most of our questions answered.  Still nerve wracking, but did ease some concerns.
We took a quick break for lunch and some time inside Monstro's mouth playing video games before seeing Dr. Peter's about his ear tubes that need to come out during this surgery.   At this point he was just done and we went back to the hotel to decompress for a while before heading over to the Children's Craniofacial Association's offices for a visit with everyone over there.  If you ever need a great cause to donate to go to www.ccakids.org and check them out.  They've been such a great help to us and the retreats they have are awesome for all the families out there with kids like Isaiah.


Hangin out inside Monstro's mouth
We then had a great visit with another Apert family.  Lisa Brown and her son Logan who is15 and has Apert like Isaiah brought him some wonderful gifts.  It was nice to put a face with the name and meet another family that we've been friends with on facebook over the years.  Its always great to get perspective from someone who has been there!

Last but not least my sister Rebecca just arrived to help take care of Elena and be here for moral support around the surgery.  Always great to have family around to help.

We'll be up and at the hospital by 6am tomorrow and his surgery starts at 7:30 and goes until about noon.  We appreciate all the continued prayers and will be updating the blog as we go tomorrow.

22 March 2017

Road Trip!

Short update. We're making our way down the road. After a late start on the road yesterday we made it to our hotel in Vicksburg about 9:30 central time. We're just about all packed up again and should be in Dallas by dinner time. A couple people have asked where to send cards. Well try to figure out tonight if the hospital or hotel is better.

Update: 3/24 - I forgot to check on this, and at this point it may be best to save anything being mailed and send them to our house.  2326 Milstead Circle NE - Marietta, GA 30066  We should hopefully be home Friday March 31st.

Otherwise Isaiah will be at Medical City Hospital in Dallas until at least Tuesday. 7777 Forest Lane Dallas, TX 75230

17 March 2017

Countdown

We're getting down to it now.  A week from today Isaiah will probably be coming out of surgery right around lunch time.  I still don't know that we're ready mentally and he's still kind of clueless about it all despite all our prepping.  He knows he's going to see Dr. Fearon, and he's going to the hospital for surgery and he's seen pictures of the RED, but I'm not sure its all sinking in. 

Work has been a mad dash for both Rachel and me the last couple weeks.  While both of us can work from the road somewhat, I don't know how much we'll actually get done, so we've both been trying to get as much tied up and taken care of as we can before leaving and its been taking a toll especially since we both work for very small operations.  Hopefully this weekend we can wrap up what we need to do personally to be ready for the trip and coast on our of here on Tuesday to start the drive to Dallas.

Helpwise right now the biggest thing we always need is prayer.  Mostly around Isaiah's health, both him staying healthy before the surgery and then through the surgery and recovery after.  

We're also a bit worried about the surgery costs itself.  While Humana said they'll cover it as 'in-network'  and there's a big gap between their 'usual and customary' costs and what the surgeon expects to get compensated. Its a gap of at least $10-20K from what we understand. We'd be on the hook for the difference if Dr. Fearon's office and Humana can't get a Letter of Agreement (LOA) or single case agreement (SCA) worked out.  There's been a little movement on that, but nothing definite yet, so prayers around that would be appreciated as well.  We're happy its not the full amount or out of network costs, but it's still a good amount of money.  We always said if there was something we'd go into major debt about it would be Isaiah's care.  We've just been very blessed up to this point to not have major bills looming over us. We've always felt that God has carried us through all of this and will continue to do so.

We've also got some help around the house lined up in Dallas and for the first few weeks that we're back home to help with Isaiah's day to day care.  Though it would probably be helpful to have some meals or someone to help me one day with the yard after we get back since I'll be thrown back into  work and trying to play catch up on everything else around the house. We're playing by ear how much we'll actually be going out once he's home.  Some kids don't want to leave the house with the halo on, but I have a feeling Isaiah might go a bit stir crazy. 

If anyone wants to get Isaiah any little gifts for his return he still loves anything and everything lego and trains.  He loves the minecraft and angry bird legos and we're hopefully going to be able to take him out to the model train show this weekend.  He also loves pretty much anything disney / pixar as well.