Pizza Dough (Day 25)

Faith has been worked over like pizza dough in a pizza shop.  They have been doing a lot of pounding and proning her to help get the lungs cleared out.  The pulmonologist wanted to get her put back on the BIPAP while sleeping to help open up her lungs, but Jesi asked to wait until Monday to see how she does once she is completely off of the sedatives.  The doctor agreed so if her lungs aren't opening enough by Monday, we will pull out the dreaded BIPAP at least temporarily.  The good thing is we know they will have to lower the settings quite a bit so maybe it won't be like a wind tunnel.  Jesi just called and surprise Faith is prone and Jesi is pounding her back.  And, this just in, we won't use a BIPAP because the ENT won't allow it with the jaw distraction...duh...this makes sense so we will use the high flow if she needs a little help opening up.  The high flow attaches to her nose where the BIPAP is a mask that would put pressure on her jaw as it wraps around the back of her head to be held on her face.  Overall she had a good day of therapy and recovery, and we continue to see improvement.

Keep on Keepin' On (Day 24)

Faith is still not completely off the sedatives since she has still had some withdraw symptoms, but she is receiving very low doses right now.  We need to get her off completely so she can be awake and cough on her own.  Faith is sitting up in bed for short stretches and does cough on her own when sitting up.  She is down to 1 1/2 liter of oxygen through the cannula, and Jesi thinks they may move her out or the PICU soon.  Not sure I like that, means we will be with other children in a room and I will be stuck sleeping in a much more crowded room this weekend.  Can we stay where we are and be dismissed soon?

Is Faith the One on Drugs? (Day 23)

The video below shows Faith prone and Jesi pounding on her back.  She will often spend a couple of hours at a time like this which tends to loosen her gunk.  She didn't have the easiest day.  The congestion was hard on her today as she also seemed to be bothered by having a smaller dose of drugs.  She is feeling better this evening and has been smiling.  Jesi said she has been kind of playful this evening, but is tiring out quickly.  The pulmonologist is going to give Faith a different steroid for the next few days to see how she responds to it then we will go from there.  Jesi has painted Faith's toenails purple, but I don't have any pictures of it yet.  I believe you all will enjoy the video...Jesi has become the PICU entertainment.

Momma Don't Beat Me

Faith continues with cough assist (Day 22)

Below I have posted a video of the cough assist machine and how it helps Faith to get the junk up and out.  It is not her favorite thing in the world, but it has really helped her to more quickly move the gunk out of her body.  She usually rests easier after it because she is clearer in her breathing.  She should be completely weaned from the sedatives by tomorrow morning...kicking the addiction.  The turning on the jaw is continuing over this week and hopefully we will be done with that soon as well.  Then the brackets will remain for 3-4 weeks while her jaw heals at home is the idea.  Remember, we probably would have been home for the last week doing the turning of the distractor ourselves had she not contracted the flu.  She has handled the flu very well especially considering it is such a nasty bacteria and virus.

Faith receiving cough assistance treatment

Sporting the Cannula (Day 21)

Faith hanging with Momma at U of M...a little tired here.

Check out that jaw...When we are done, I will do a before an after.

She's feeling a little better, but will have the distractors for a few more weeks.

I was able to make it to the hospital and see my beautiful wife and daughter today.  Faith sound really junky when I arrived, but had gotten much of her color back.  While I was there, they used the cough assistant so I video taped it which will be up for viewing shortly.  It worked very well and helped her get a lot of junk out.  She also laid on her tummy for a couple of hours which caused a lot more junk to come out.  By the time I left this evening, Faith sounded much better.  Jesi said she was smiling a lot as I made the hour long drive home at least until they started the cough assistant machine again.  I expect to see her doing much better in the next couple of days.

Cough Assist to the Rescue

Faith has been receiving "cough assist" help.  It is a system of air pushing and pulling to help make Faith cough.  As always with her, sometimes it works and sometimes it doesn't.  She continues to recover.  Her hemoglobin is low which is making her pale, but they are only watching it as it is not low enough to do anything at this point.  The weaning process continues as she is now off the high flow air and using a cannula with about 2 liters of oxygen which is not terribly high and mixes with her normal breathing.  She is still quite junky and working a little to breath as she needs to cough and shake this stuff out.  It is loose, and they continue to pound her back to help it keep loosening.  Her CO2 is in a good place too.  I am disappointed that Jesi has no entertaining hospital stories to tell.  I think the only silver lining to being kept out of the hospital this weekend due to my recent sickness is that I did not have to listen to the Michigan skunk bears (wolverines) making fun of my Buckeyes for their terrible shooting performance last night against Kentucky.  Well, I had to hear them in the background of our phone conversations, but that was it.

Being Held by Momma

Faith was held by her momma today which was the first time in almost 3 weeks.  She is slowly weaning off of both oxygen and sedatives.  Because she had such heavy doses of sedatives, she has an addiction which needs to be slowly lowered.  If they drop the meds to quickly, she will start shaking so they give her doses at that point.  The med levels have dropped quite a bit, but they were quite high.  The amazing thing...Faith is sleeping without many moments awake on a much lower dose of sedatives.  Jesi thinks the breathing tube would disturb her to the point she awoke when on the higher doses.  They continue to pound on her in order to loosen up the junk in her chest.  It will be good to get her completely off the meds because she can help by coughing the stuff up.  Jesi is still in the hospital with Faith since we have had sickness here all week, I was not able to trade with her.  We don't want Faith to get anything from me, but we also cannot have Jesi getting sick by coming home because then she couldn't go back.  Hmmmm...maybe we could trade, then if she couldn't go back, I could have her take my place selling commercials.   That could be fun to watch.

TUBE OUT!

The breathing tube was removed from Faith's throat earlier today.  She is now on a high flow system and recovering well from the switch.  She is working all of the drugs out of her system and is a little upset by the change which we expected.  We are ecstatic to have her awake and off of the sedation.  Hopefully, I will be able to go tomorrow if this sickness is gone by then.  I will try to get pictures up as soon as I am able.

From the other day, we caught this video of Faith awake while heavily sedated

Click on the link to view the video..................

Removing the Tube...

Doctors said they are going to remove Faith's breathing tube tomorrow.  They will switch to a high flow system which will like be attached at her nose, but this will mean no more drugs and she will wake up completely.  We are really ready to have her off the ventilator so please pray that it goes amazingly well for Faith.  So far she has had a great day as they continue to wean her.  We are very excited to get through this step because it is the first step to getting out of the hospital.  If she does well, it could be very soon.  We are definitely ready to put these last couple of weeks in the past because sickness has been running through all of our children including now.  Last night Grace decided to projectile vomit from the upper bunk bed.  Other than a giant mess, the real problem was Hope sleeping on the floor below....oh yes.  Spent 2 hours cleaning it up last night and then woke up feeling sick myself.  Not that we are even close, but it began to make me wonder how Job must have felt with all those things happening one after another.  We thank God for His faithfulness, and His sense of humor.

Weaning to the Left...Weaning to the Right...

The docs continue to work toward weaning Faith by dropping the settings on the ventilator.  She still has congestion, but her vitals are strong and we have been without a fever for the last couple of days.  That is wonderful especially considering she had a fever all day on Sunday even with regular Tylenol doses throughout the day.  The tv in the room continues to get worse and worse to watch...Jesi thinks they are trying to make her leave.  On a nasty note with great relief, Faith blew out this morning after several days of storing up treasures.  She pushed it all the way up her back and one of the stuffed animals was a casualty of this unfortunate yet very joyous event.  The nurse is going to spit shine her tonight...hmmm...this means she will get a bed bath.

Faith is taking a beating...

Faith's temperature was up yesterday, but came down today.  She is taking regulars beatings from the nursing crew as they pound away on her to get the junk loosened up and suctioned out.  They have been turning her onto her stomach and beating on her back which is quite a feat to accomplish with the jaw distractors on her face.  It is something to keep her up high enough off the bed so the framework doesn't hit the bed as she bounces up and down from having her back pounded.  Overall it was an uneventful day as her CO2 levels dropped quite a bit today.  The hardest part right now is keeping Jesi entertained all day.  She is getting quite skilled with the basketball hoop and ball that she set up.  In fact, she was beating the pants off of me so I quit.  In the end, it's another day closer to getting out of the belly of the beast (Ann Arbor - for those who don't know, I'm a Buckeye fan).

A Wee Bit High...

I was able to get some fun photos with Faith's eyes open.  She is a bit on the high side, but she was looking around to all of us and enjoying her awake time without grabbing at all the stuff attached to her.

Hey Somebody Get Those Kids Outta Here

Here the children got to see Faith in her room, but only from a distance because they don't want her flu bugs spreading through the hospital.  Starting from the bottom, it's Hope, Gideon, Elijah, and Grace.

Junk coming out...

They continue to work on Faith by pounding away, suctioning away, everything they can.  She is well this morning and resting easily.  She has been waking up more frequently, but they have grown less concerned since she wakes up rubs her eyes (now that restraints are off), moves around some, and then falls back to sleep.  I did capture some pictures with her eyes open, but will have to wait until I have access to put them up.  I keep learning new things.  For example, Faith's CO2 level has been elevated, but this is in part her own body dealing with the diaretics she is receiving.  Diaretics throw off her electolyte levels and her body is retaining CO2 to compensate for this by trying to balance its own levels a different way.  I am starting to understand the doctors a little too much...spending way too much time around docs working on my honorary doctorate...:)

Getting rid of congestion...

Faith and I are spending the weekend together; although, her mom and siblings will be coming later today.  Faith is still trying to get the congestion out.  The 2 strains of flu have tried to keep her down, but she is fighting them off as the Spirit of God is within her.  We will likely keep her intubated until at least Monday as she recovers completely.  I too am still getting the junk out of my chest and have been fighting this thing for the last 2 weeks as has Faith.  Yesterday was my first day of truly feeling better so I expect she will hit the same stage soon.  Faith and I are using our time to study and learn more about John Dewey, the father of American public education.  If you have never read about this guy, you should.  This man's beliefs are frightening and he has been very successful at pushing his views on all of us.

Sorry...will have to work on video later

Please note that Faith has a breathing tube because of the flu that she contracted likely right before surgery, but then showed up after it.  She would probably have lost the breathing tube entirely today if not for this crazy flu that we have both been fighting.  It is basically the congestion that is requiring the intubation, not the procedure at this point.  FYI...she has 2 different strains of the flu at once, but is beating it down like a .

Keeping Her Chin Up...

Faith is keeping her chin up even though she had her nasal breathing tube removed today only to be replaced by a breathing tube in her mouth.  They want to clear her out more quickly with the new breathing tube so she will hopefully be off the breathing support altogether soon.  The great news, after looking at Faith today, the doctor said she will no longer be a critical airway patient after the procedure is done.  He said she will be easy to intubate when finished, but I am looking forward to ending her dependence on the BIPAP which I am confident will happen.  If you look closely at the pictures below, you will notice that her double chin has disappeared and the chubby cheeks will begin to thin as well with the chin growing as it is.

Change coming...not sure what though

Well, Faith is supposed to have her breathing tube removed tomorrow; however, they may put in a larger tube...yes larger, scheduled about 11:30am.  They did not like the cloudiness of her lungs in the x-ray so they may put in a larger tube to get more air flow into her lungs to open them up more.  Her lungs sound clear and she is doing great, but I  have also been fighting this sickness for the last week and a half.  I am not surprised that she is still fighting this off considering how I am feeling.  On the bright side of having a larger tube, they can fit the larger tube in...she is opening up more.  Everything continues to progress very nicely, and we are excited that the end of our hospital journey is growing closer.

Please pray that they are able to remove the tube entirely tomorrow, and that she breathes nicely on her own.

Slow day...good day

Faith had a good day today with nothing really remarkable happening.  We are still waiting to find out more from the doctor as to the breathing tube coming out on Thursday.  Hopefully we will know more on Wednesday, but regardless everything continues to progress with her jaw distraction.

Doctor visit today

Dr. Green, who did the surgery, stopped by to see Faith today.  Everything looks good.  The plan was to have her breathing tube removed on Monday in the OR; however, he may want to change the plan.  It is possible the breathing tube could be removed as early as THIS Thursday.  That would be an absolute Hallelujah moment.  If she is able to have it removed, it means she probably won't need to be in the hospital as long.  Faith still needs to have all the adjustments made to her jaw through next Tuesday (I believe). We will see how it plays out, but for now things look like they are moving in the direction we have been praying for since we knew God would be walking us through this surgery.

Other than that, it was a pretty tame day all in all.  That little girl hasn't pulled any antics on us today which left Jesi with some free time...hmmmm...wonder what she did...

Sunday pictures and some explanations...

Here  is a wide angle as she is resting comfortably today.

As you can see the large tube into her right nostril is how she is breathing.  She has a smaller tube in her left nostril that is being used as a stack vent to remove gas and air from her stomach.

 

 

 

 

 

Here is a close up of the right side bracket with 2 pins on each side.  The break in her jaw is between the pins so as they adjust .5mm each morning and each evening so her jaw will continue to grow.

The pin sites are kept very clean with several cleanings per day, and her sites look great.

She just looks plain cute here...even with all that junk.

Pictures taken Friday

Here Faith is sporting her boots...they keep her from having foot drop.

She wears them 4 hours on then 4 hours off.

As I said, these pictures are graphic so you can see what is happening with this process.  These pictures were taken Friday which is the 3rd day of turning the brackets.

Recording records...

Well, I have not had to experience the troubling moments that Jesi has had with Faith over the past few days.  She had a great night with only a slight fever at one point.  This puts her over 24 hours without having any nerve racking moments.  She is still resting comfortably...I think she is resting to prepare for Ohio State thumping Michigan in the Big Ten Tournament today.  At least they better, because I don't want to be stuck at U of M with my Buckeyes losing to them.  I want to give the grief not take it.

First weekend after surgery

Well here we are in the first weekend after surgery on Friday night.  Jesi has gone home for the weekend to get some much needed rest as she has the flu.  I am getting over the flu having missed 1 1/2 days of work on top of the day off for surgery.  I have taken some pictures, but need a way to transfer to my computer.  I will try to fix that so I can share some photos of faith which will be pretty graphic for those of you with a weak stomach.  She had some issues during the night, but the rest of the day has been uneventful...and she is resting nicely now.

Little bit of a rough day today...

Faith's surgery went quite well, but the couple of days following have been a little more challenging.  I missed a call from Jesi then returned the call to hear alarms in the background and Jesi asking me to immediately head to U of M.  Faith crashed pretty hard today.  She quit breathing and her heart stopped.  It seems her breathing tube appears to be the culprit.  It somehow pushed too far down and put pressure on her heart and lungs causing her body to react.  The good folks at U of M acted quickly to resuscitate Faith in about 30 seconds since she has a nurse essentially at bedside 24 hours a day while intubated.  It is always tough on Jesi when these things happen, and I was disappointed that I wasn't with her to help her walk through this today.  On the bright side, I was able to drop all of my stuff and drove quickly to Ann Arbor to spend the afternoon with them.  That was nice, and Faith was resting very comfortably when I left.  They continue to adjust the distractor and grow that little jaw.  Oh, if I didn't mention yesterday, they have determined Faith has the flu...although not sure of the strain.  I think she came down with it the day of or day after the surgery as I also did.

God continues to be faithful, and we continue to trust Him. 

Appreciate those prayers

Faith's CO2 level was reaching 70%, but it has come back down to about 30% which is the range most of use operate in so this is good.  They will have to stay on top of the CO2 level to make sure it stays down.  They also were able to get the PICC line in today where they failed at it twice yesterday.  This will serve her better than the regular IV and isn't as likely to come out.  Also, they made the first adjustments today on the distractor which will begin growing her jaw out.  All in all everything is moving along nicely (with a few hiccups). 

Please keep praying for Faith

Faith has some complications which we ask prayer for.  She turned blue at one point yesterday because mucus was blocking her breathing tube.  The great folks at U of M quickly sucked out the blockage and corrected the problem.  Her carbon dioxide levels continue to be quite elevated so they are working to correct that.  Jesi said her color is not quite normal yet which makes sense with the CO2 problem.  I had a bronchial thing hit me after leaving the hospital so please pray that she will not have any issues with the same sickness.  Obviously this will impact her more right now.  When she has been sick, her CO2 seems to elevate.  She is a tough kid, and we very much believe God will get her through this by His mighty hand.  He is good and His mercy endures forever.

Faith with the sibs

Tomorrow will be the start of adjusting the jaw little by little each day.  Today was a bit slow, but Faith is resting comfortably as they try to balance her pain meds.  They did try to put in a picc line twice, but failed both times.  This is to replace the IV.  Also her carbon dioxide level is a little high so they are working to correct that as well.  Her siblings were able to see her which was very nice.

Now in PICU for the next 2 weeks

Faith is doing well.  As you can see in the picture, she is intubated through her nose instead of her mouth which is much better.  The distractor (or erector set as the nurses call it) on her jaw is not yet visible since it is covered by gauze.  We will spend the next 2 weeks having her jaw adjusted to grow it out and by the grace of God get her off of the bipap machine.  We will continue to put up pictures as available.

Doctor briefing us on surgery.

The doctor came out a few minutes ago and let us know that Faith's surgery couldn't have gone any better.  Many times there is tremendous blood loss with this surgery requiring a transfusion, but Faith had very little blood loss.  We are now waiting on them to finish with her and then we will be able to see her.

Heading into surgery

Faith headed into surgery about an hour late so we expect to hear something about 3pm.

Preparing for surgery

Here she is getting ready for surgery.

Before profile photo

Here is Faith before the jaw distraction surgery.

Little Faith To Big Faith: Jaw Distraction surgery coming Monday...

Little Faith To Big Faith: Jaw Distraction surgery coming Monday...: "Faith will have Jaw Distraction surgery and her adenoids taken out on Monday. Her sleep apnea has been handled by the bipap machine, b..."

Jaw Distraction surgery coming Monday...

Faith will have Jaw Distraction surgery and her adenoids taken out on Monday.  Her sleep apnea has been handled by the bipap machine, but the setting is very high and we are very hopeful that this surgery will end her obstructive sleep apnea problem.  This is a long process though and will require 3-7 weeks at U of M Children's Hospital.  It will also give her a chance to eat on her own.  The doctor says she cannot eat on her own with her jaw as it is because her jaw is too short.  We will keep you updated as to the effects this surgery has, especially so those of you facing similar things can learn from our experience.