Spring....Really?

Here we are on a beautiful 45 degree spring day...wait that's only 13 degrees from snow.  Well, I guess I should be thankful that our house is still standing.  That crazy Oklahoma weather made it to the deep south...yikes.  Well, Faith is again fighting off a sickness that seems to be going around the schools.  You would think that we could avoid most of this stuff by homeschooling, but somehow Faith's big sister Grace got sick along with Elijah and likely passed it on to her.  It is amazing how much sickness has been in this house since her surgery, but God said He would raise up a standard.  She is fighting it off, but it certainly has made for some long nights (or should I say short nights of sleeping?).  The suctioning device has gotten a ton of usage since we came home and has come in very handy.  Currently Faith is prone which she will tolerate for a while, but I am guessing not much longer.  It really is a great way to help her get the congestion out so if your kid needs to drain, lay them on their stomach at an angle with the head lower than the feet.

Faith continues to be much more alert at least when she is feeling well.  Her feedings are definitely getting better, but we can't wait until the mucus is all gone because we think much of her spitting up is from too much mucus. 

Faith's jaw distraction is continuing.  She dropped by Dr. Green's office with mom and had a good report on the jaw.  The jaw is still off to the left, but I think it is beginning to move over some.  At some point, it should move back into place when it grows enough because her muscles will begin to operate properly and not pull the jaw to the side.  Well, I think Faith's patience being prone is running out and I must check on her.

Pushing to the Right

We started the new round of jaw distractions with the goal of pushing Faith's jaw back to the right since we all know a move to the left is a gigantic mistake.  Faith is sitting beside me playing with a soft little Buckeye football.  She is a happy little camper right now.  It is quite funny to watch her move her jaw up and down.  I think she is fascinated with the way it feels; although, she is going to end up with huge jaw muscles.  She will probably have a hard time keeping her head down when they finally come off...like taking the ankle weights off.  Faith is quite the trooper.

She seems to be doing better with the Compleat Pediatric food that we began recently.  She doesn't seem to have as much gas.  We have stopped using Miralax, and she keeps moving everything through somewhat regularly which might be disgusting, but it is quite helpful.  The next step will be to get the jaw done and begin attempts at feeding her by mouth.  It will be interesting to see how the longer jaw affects her swallowing and eating skills.  With all the extra room in her throat area, she should be able to learn how to swallow better and hopefully lose her harsh gag reflex.

Finally, a greeting from Faith....Aaaahhhhhhhhhhhhhhhhhh 

A Little Faith and Hope

Faith dancing to the music

Good Friday....Good Pics

I'm pondering what Jesus did for me on this day.

Dad, I can't pose much more cute...hurry up and snap it.

Everyone join me...O-hi-o, O-hi-o, I wanna go back I gotta go back to O-hi-o.

Hey Mom, wake up and get down here beside me for the picture.

Believe it...back Home

Picture from last night at the hotel before surgery.  You can see how the jaw juts out and how far the distractor was sticking out from her face near her ear.

Notice the distractor is now much closer to her face and the jaw no longer juts out.  We also ended up with a new steel bar on the right side making the distractor even bigger and heavier.

The pins are in a new spot.  You can see the wound from where the pins were located further down her jaw.

This is a first for us.  Faith had surgery this morning at 8:30, was done by 10am, and is now home with us.  The surgery went extremely well.  Dr. Green thinks her jaw will align better than he was expecting before the pins came out.  God certainly can turn the bad into good.  We will start distracting again on Saturday morning with Dr. Green seeing her again on Tuesday.  I will have to get some video soon because Faith is really doing great this evening and just had the surgery this morning...one amazing little child. 

Dinner at Wendy's last night...$10.64, Three surgeries for the same problem...incredibly expensive, One Great God....priceless

Hangin' with Mom and Dad in the hotel

We are here in the hotel and Jesi is laying on the other bed with Faith just looking at her.  Faith is quietly looking around and slowly falling asleep.  Her eyes are rolling just ever so slightly as she is working to stay awake...oh, but there go her eye lids.  We really don't want to be here, but here we are back in Ann Arbor.  We are supposed to arrive at the hospital by 7:30am with surgery at 8:30am.  The surgery is only expected to be about 45 minutes or so.  I am hoping all goes so well that they let us leave sometime tomorrow after its done.  Well, Faith is still hanging on, but just barely.  Now I am wondering if Jesi has fallen asleep looking at Faith.  I would throw up some pictures, but it seems the server for the hotel will not let me.  Oh well, you will just have to use your imagination.

God Makes The Crooked Places Straight...

You can see how the pacifier sits crooked in her mouth.

Notice how the jaw is pushing off to the side and does not line up with her nose.

'I will go before you And make the crooked places straight; I will break in pieces the gates of bronze And cut the bars of iron.'  Isaiah 45:2

God is good and has walked us through another interesting day.  It started with the last two nights of little sleep because Faith has not felt well.  We gave her 2 liters of oxygen to sleep through the night because she was having trouble breathing.  We had an ENT appointment for today, but decided to take her to the ER so they could evaluate her.  They only gave her a dose of steroids to help with swelling and determined that she has the croup or some form of asthma.  She doesn't have a croup sounding cough, but has the voice somewhat.  Had we only thought to treat this like croup seeing as we have done this many times with our other kids, oh well - we didn't have to wait long in ER.  That's good because Jesi kept telling them we wouldn't wait since we had a 3:30pm ENT appointment, and she was going to pack up Faith and take her if they weren't done.

Our next step was to head to the ENT appointment.  We were NOT excited about this appointment which I am sure you can figure out why by looking at the pictures above.  When Dr. Green came into the room and looked at Faith, he said "Oh, this is not good."  It looked worse than the first time he corrected her jaw with a second surgery so you can imagine our very measured response was only the Holy Spirit working through us.  He sent us to have x-rays of the jaw.  As I watched each picture, I tried to figure out what I was looking at because I saw the pins, but not the bone.  There is a good explanation for this...the pins came out of the bone and are floating in the flesh.  So what to do?  Well, this is not nearly as bad as we thought it might be.  We will have to go back for a third surgery which should be fairly simple and should not require any cutting at all.  Dr. Green will reinsert the pins to push the jaw back in place.  When someone breaks their jaw, the muscles pull it out of place which is what has happened with Faith.  Her jaw has been pulled to the left by her muscles...hey, she's just one strong kid.  I am a little surprised the pins aren't actually screws, but that is not how they do it.  He told us that he had one boy push the distractor out of his face with his feet.  He was an infant so he could easily get his feet to his face. :) 

All that said, Faith's second problem should be easy to fix.  We may have to spend one night, but if things go well we could be out of the hospital on the same day.  If not, we will be spending Thursday and part of Good Friday at U of M.  All the things she has had to endure - we would still do this again because it is amazing how she can breathe.  We have had several people talk about how she is more active which she is.  We thank you all for your continued prayers....May the Lord bless you all.

Restaurant fun

Faith continues to do well.  As I mentioned, we started a new food for use with her g-tube.  This is real food like chicken, veggies, etc., and it seems to be better with the gas problem.  However, Jesi headed to the rest room as I waited for the table at the front of the restaurant.  Just when Jesi was gone and far enough away, Faith decided that she needed to throw up, and Jesi had our our catch pan along with all the wipes in her purse as we usually do.  So there I stood at the front of the restaurant using my hand to hold the vomit from streaming down her entire front.  The waitress was kind enough to grab a bunch of napkins.  As is Faith's way, she had a huge smile when Jesi brought her back with new clothes.  Oh, did I mention that she also filled her diaper?...likely caused her to throw up.  She is quite the kid, and loves to make herself known wherever she goes.

Eating at Home

Hi Everybody... I'm Baaaack

HI - I'm sitting at home eating right now...yes, I have great talent as you can't see me eating.

I absolutely love to play with my sister Hope.  She is so much fun and always takes time with me.

I love to smile, but I have decided to keep this pacifier in my mouth so I can hide my crooked jaw.

Ok, you're boring me now...come on, move along.

Sorry for the slow posting this week.  I have been quite busy in the evening once I arrive at home.  I generally have been taking Faith and helping through the evening.  She has been a handful this week and waking us up a bit during the night.  We are still weaning her from her drug addiction which should be finishing tomorrow so that will wipe out some stuff we have to do for her.  The first 3 days home were busy with the suctioning machine we brought home with us.  I just can't figure out how that little body can produce sooooo much stuff.  The production seems to be slowing dramatically with as we did not have to use the machine much today.

We have a new food to try.  We are hopeful that this food will not produce such an enormous amount of gas.  If we can cut down on the gas, it would be absolutely huge because gas is causing most of her spitting up problem.  We hope to try some foods by mouth once we get the jaw into better alignment and it has healed completely.

The very best part besides having the whole family together...Faith is sleeping so nicely without oxygen or the bipap.  It is so wonderful to watch her sleep.  I will have to get some pictures of her sleeping which most of you can't really appreciate without having seen how she use to sleep with the bipap and stop breathing before that.

HOME back from the Belly of the Beast

Jesi called me earlier this morning saying we wouldn't be out of the hospital until tomorrow, but with a little push, we got some great help to get out of the hospital today.  We have a suction machine to help us with her coughing.  She is doing very well, and we just did her first distraction.  Now trying to figure out the medicine step down schedule we were sent home with.  I will get some home pictures and video to put up soon.

Thanks for all of your prayers.

Faith getting ready

Just on the Edge...(Day 35)

Well, it's been 5 weeks in the hospital, but we think tomorrow will be the day.  Really Faith could have left today, and the PICU folks would have dismissed us today, but the ENT wanted to wait until at least Monday.  Her distracting is going well, and though yesterday (day after surgery) was a little tough for Faith, today was very a very good day for her.  She was quite stopped up yesterday, but unleashed the fury today.  I spent much of the afternoon cleaning her bed, but oh was she happy.  The above pictures were actually taken just prior to surgery, and she is pretty much back to looking like this even though surgery was Friday.

Say Bye Bye Breathing Tube (Day 34)

I woke up this morning at 5 to the nurses working with Faith.  They sprinted her at about 5:20am which means they turned off the ventilator and let her breath through the tube by herself to see how she could do on her own.  She did fabulous so the plan was maintained to remove the tube at 8am.  ENT was late coming up, but they made it and we removed her breathing tube at 8:20am.  It is just after 9am and she is already playing with her hands.  She is a little junky sounding, but doing well.  We are praying that her recovery will be amazing today and by God's grace we can get out of here tomorrow.  We are enjoying listening to her talk to us with her little voice.

Rounds just stopped by us and they are happy with Faith's progress.  We are going to get her feeds moving at 10:30am.  She is still working off the sedatives, but they did not raise them so we are still on course to wean her completely very soon.  Tylenol seems to be enough to take the edge off of any pain.  Let's get rid of these meds and get outta here.

Resting Comfortably (Day 33)

For a few minutes, we thought they were going to put off the surgery because Faith has still been a little junky in her breathing.  Jesi, quickly thinking, asked them to get a doctor from the PICU to listen to her and see if she sounded good enough since they know her better.  It worked out...he thought she sounded great and told them to continue with surgery so we did.  Faith went through surgery well and is resting nicely right now as I sit and type this.  I am getting ready to lay on this oh so comfortable chair, but hallelujah, Jesi found the sleeping mask to block out light so I should be able to sleep tonight.

Faith is currently intubated because the doctor wanted to wait until a different staff group was here so we are waiting until 8am to remove the tube.  She is doing very well with all of her stats and is not at very high settings on the ventilator so we should be in good shape.  We will start distracting her jaw on Saturday evening or Sunday morning, and if everything is going well, it might be possible for us to leave.  Also I will try to get some pictures up, but having trouble with the speed here at the hospital.  What do you expect from a bunch of slow wolverines?

Waiting To Go

We were supposed to go into surgery somewhere between 1pm-3pm, but here we are at 4:30pm and hoping to make it in by 5pm.  The docs just came to speak with us so we are getting close.  Very close to not going, but on our way now.

Kicking It in Hotel Mott (Day 32)

Faith and Jesi had to be moved out of their room twice in the last couple of days.  I know it sounds annoying, but the room she ended up in has its own bathroom...didn't even know that existed at Mott.  The other good part...the room is off by itself so Jesi could shut the room up and was able to take a nap which is almost impossible in the PICU.  The bad part...the nurses in this side won't let Jesi leave the room unless she puts on a plastic gown, mask, and gloves.  Crazy, but what do you do?  They also had to put in a new IV which doesn't sound like a big deal, but Faith is ridiculously hard to stick an IV into.  Ah, but the nurse who has had great success was there and Jesi tracked her down like a dog...good thing to...she was able to get her and....success.

Surgery is here soon, and I will be driving into the belly of the beast tomorrow morning.  We expect to be in surgery sometime between 1pm-3pm.  Thanks for all of your prayers.

Surgery Friday...(Day 31)

Here we are almost done with the flu.  Faith is feeling absolutely great, and we're headed back to the OR on Friday.  Since Faith's jaw fused on the left side, the docs will have to go back in and cut the jaw again.  They will also put on a new distractor on the left side as well.  I think that I will have a conversation with the good folks at U of M to make sure they see this the way I do.  If I screw up for one of my clients, I bear the brunt of it and fix it at my cost.  I think U of M should donate their services with this correction...should be an interesting conversation.

The video below is fun to watch as Faith was starting to move to the music which you cannot hear in the video.  She was enjoying herself and has been all week long.  It will be so much fun to get her back home soon.  We are hoping the repair surgery goes really well and they kick us out on Saturday or Sunday.  I heard the weather is looking good for Sunday...sunny and 70.  That would be perfect...I'm just asking Lord, well and believing.

Faith does a little jig...

Too Excited To Be Still...(Day 30 in the hospital)

Jesi said the last 2 days have been the best 2 days she has ever seen Faith have.  She has been laughing and smiling like no other time.  Kind of makes you wonder if she is breathing better than ever before.  We have noticed that she ignores people when she is dealing with issues that cause discomfort.  The video below is from the weekend and not the last 2 days...wish I had video from the last 2 days to see myself. 

Faith had a CT Scan today to try to determine the problem with her crooked jaw.  She had too much fun riding to the lab and got so excited they could not do the scan this morning.  Because they were doing a computer model, they could not use anything to tie Faith down and she refused to be still.  So they had to wait until later in the day and had to put Faith under to keep her still for the scan.  Once the scan was complete, it was clear what was causing the problem.  The right side of her jaw distracted perfected, but the left side had fused and did not distract.  I kept asking why it was so tight when trying to turn it.  The docs thought it was the hardware turning tightly, but not the case.  The bone had fused, or as I like to see, Faith's body healed too fast for them. 

The plan...oh the plan...Faith is going to go back to OR sometime on Friday so the docs can go back into the left side of her jaw and separate the jaw bone again (break it) so the left side can be distracted properly.  If everything goes as expected, she shouldn't have to remain in the hospital long and instead would be able to go home where we would do the distracting.  This is way better news than we first expected.  We thought they might have to redo much of the jaw distraction and possibly even remove some of the bone that had just grown in place.

Let's hope we can keep this visit under 5 weeks...that means we need to leave by Saturday.

Faith sitting in her chair

Wacky Jaw (Day 29)

OK, so Faith is finally starting to feel better as you can see from the video below.  She is really clearing out and her lungs sound clean from top to bottom.  Dr. Green visited today to look at Faith's jaw, and didn't say very much.  It is not aligning properly.  I look at her jaw and wonder how it got off so much.  They are going to do some tests tomorrow to determine what needs to be done, but it certainly seems to us as though they will need to make a correction to her jaw.  This may require surgery, but we will see.  Even with this potential set back and the several problems along the way, we would absolutely do this again.  It is amazing to watch this little girl sleep without the help of oxygen or a BIPAP machine.  This will eventually be an amazing life changing event for Faith - of this we are confident.  It certainly can be disheartening to go through all of this to possibly extend it even more, but as my wife so kindly reminded me, God works ALL things together for good to those who love Him and are called according to His purpose.  If there is one thing I believe firmly, we were called by Him to go through this, and I pray our experience is fruitful for Faith, but reaches way beyond her and changes the lives of others.  Our lives are not our own, we were bought with price, and we belong to Him.  With all that and a messed up little jaw, Jesi said Faith had one of the best days she has ever seen this little girl have.  Faith was laughing and playing with balloons and having a grand time today.

God is good, and His mercy endures forever.  May He be glorified through this little girl, and may His name be lifted up.

Faith is starting to smile

Swinging Left...Thought Right If Anything (Day 28)

You can see Faith's chin is too far left, but is being corrected.

Faith is chilling with Daddy and brought all her stuff along with her.

Faith is sitting in her chair in the bed and grabbing Jesi's face.

Momma getting the fuzz off of Faith's forehead...one hairy girl.

This picture is way too cute...Jesi was pounding on her chest.

Faith had a great weekend.  As I said, she has gotten a lot of junk out and you can see from the pictures how much better she is feeling.  It really is so nice to watch her sleep so well without any oxygen or machines.  I am feeling very confident that we are going to say Bye Bye BIPAP.  I can imagine how nice it will be for her when the jaw isn't crooked anymore and the distractors are gone.  She slept a bunch yesterday, but today she was awake and smiling by this evening when Momma got there.  We are hopeful that her recovery will be quite far along by tomorrow, and maybe we will be very close to leaving the hospital.  As long as her lungs are clean, we are very comfortable with all of the other issues.

Wow, Now That's A Load (Day 27)

I missed yesterday's update as I came to the hospital in the evening to give Jesi a break from her 2 week stint without leaving this place.  Since I was sick last week, I couldn't be in the hospital and Jesi couldn't be at home around a bunch of sick kids.  Faith is doing well today.  She has been uncomfortable at times, but for now she is sleeping very comfortably.  The wonderful news of the day...we removed her oxygen this morning at about 6.  She has been prone (laying on her stomach at an angle with her head down) most of the day.  She slept prone from 1am to 6am then we suctioned her 6:15-6:45am which is quite a bit of time to be suctioning junk.  And WOW was it a lot, but that is good.  I think it is finally coming out, and it is so nice to see Faith sleeping without oxygen or a BIPAP, and she's hanging at 93-95% oxygenation even with remaining congestion.  One issue we have to work on is her jaw.  We have stopped turning on the right side because she is off center so we will continue turning on the left to get it back in line.  Looks a little funky right now, but should be fine.  We are still working the sedatives slowly down to avoid withdraw issues.  Gotta watch those 2 year old trisomy 18 drug addicts.  She is quite the little trooper.