Monday, January 23, 2012

Cranial Facial...what?

Here is Faith intubated with RSV and the H Flu.
Here is Faith today...ah, that's what we like to see.
Nice to see her sitting up instead of laying in bed...of course she no longer has on these cute little pajamas as she just threw up on them.
Jesi just took Faith to U of M today to see a cranial facial doctor about her high palate.  When she gets a little older (age 6-8: love when doctors talk like this and plan for her to be around), we may look at putting a spacer in to lower her palate, but that is in the distance.  The doc would like Faith to work with their therapy to help her learn to swallow.  We will give it a try to see if they have anything that will help her.  Even with the jaw problem, he thought her bite turned out pretty good.  I will claim that one...as I did the last turning to align her jaw which was quite tricky.  I might as well take the credit. :)  He also said that her apnea is minimal.  The spacer idea is to somehow help with the apnea.  I would think it is better to help with swallowing, but I'm no doc.  It helps people with small nasal passages and mouth breathers like Faith to breathe more easily through the nose.

It was nice to come home to see Faith smiling, dancing, and enjoying herself.

Sunday, January 22, 2012

Jaw Distraction...Before then After

BEFORE...Faith before March 7, 2011
AFTER...Faith on December 2, 2011
AFTER...Faith on December 23, 2011...3rd birthday

I happened upon some photos from earlier in the year when I took some pictures of Faith before her jaw distraction.  My after shots are not directly from the side, but these 2 photos months after give you a great view of the impact the jaw distraction surgery has had on Faith.  I made them larger so you can more easily see the difference.  For those of you with T-18 babies, look at the jaw of your children.  If they appear anything like Faith's short jaw, please get to a good ENT and get it checked.  If you are anywhere near Michigan and U of M, Doctor Green was our ENT.  Faith has been so much better off since we did this.  It is amazing how she went from looking like a baby to a little girl.  We are happy to discuss this with anyone interested...we will tell you the good and bad, but know that we would do this all over again.  We can also help you know some things to watch during your procedure to avoid some of our struggles.  This procedure can totally change how your child can breathe and end or drastically reduce apnea.

Saturday, January 21, 2012

While Faith Recovers...Sickness came back from FL, but pictures too

This picture may look a bit funny, but that's because it was.  Faith really enjoyed the characters, but especially Minnie Mouse.  In this photo, you can see how happy she is, and she wouldn't stop talking to Minnie...if you listen maybe you can hear her unceasing babbling.
You can see how happy she is with Minnie...it was so much fun to watch her reaction.
We think she is doing an impersonation of Goofy...love those faces.
Ahh...gotta get a photo with Mickey Mouse.
Faith, you're not suppose to lick Donald Duck's bill.
Oh those stars are so pretty...look at the camera.
As long as she had her sunglasses, the warm sun was great.
Sporting a cool look in Florida.
Woody and Buzz...boy are they big...look at the size of that hat.
Chilling with Hope's Minnie.
Ok, the guy who took this picture was way too nice.  He took a family photo then had our other children move out of the frame so he could take pictures of Faith with just Mom and Dad.  It made Jesi cry and she hugged him because it was so thoughtful.
Faith really enjoyed all the lights in the Christmas display...she is in awe.
She is happy to spend time with the princesses dressed in her own princess dress.
She enjoyed meeting Belle, but this was really Hope's wish come true.
We got these photos free from Disney as part of our trip into the Disney parks.  We took lots of family photos which was nice because I could be in the photos as well instead of always taking them.  As the post title says, we brought back a virus from Florida which caused Faith to get RSV and H Flu, but we are now hanging out at home instead of the hospital so I decided to share some of the Disney provided photos.  It was so warm...and now, well its not so warm...kids have been playing in the snow.

Friday, January 20, 2012

HOME SWEET HOME

Faith was released from the PICU yesterday so we were able to bring her home.  For those of you who don't know, usually patients are dismissed from the floor, but we leave the hospital when it is time to leave the PICU.  We really do more in caring for her than they would do on the floor so it just doesn't make sense to be moved there.  If we are going to be in the hospital, we need the good stuff.

Now that we are home, we can refocus on the bleeding issue.  She isn't bleeding at this point, but we have a new plan.  If we begin to see the signs of possible bleeding, we will head to U of M's emergency. Dr. Truding, our GI doc, has exhausted all of his resources at Beaumont and is sending us back to U of M.  I so appreciate his straight forward way of working with us.  We are bummed that we will have to take this to U of M as it is an hour away when there's no traffic.  At Beaumont, I can run to see Jesi and Faith for lunch since it is fairly close to my office.  U of M is much harder, but at least they have a brand new hospital.  We appreciate your prayers though because we would rather not see the inside of the new hospital.

It has been funny to watch Faith in our return home.  She started to get happy just leaving the hospital, but even more she was excited to come home.  She has been all smiles and happiness since we got her home.  I thought maybe it would wear off quickly, and she would realize that she still doesn't feel well.  She still has spurts of that, but overall she is still quite happy.  The nutty people who think these children will never understand anything...she understands more than they do.

Wednesday, January 18, 2012

Oxygen On and Off...and On...and Off

Faith is getting there.  She has times where the O2 is taken completely away and she has done well, but then she will start to drop and needs it again.  She is getting there though.  In fact, she is feeling good enough now to know that she doesn't feel good...yes, it does make sense - just think about it.  The docs have talked about letting her go tomorrow, but she still sounds really junky and with the O2 still being used it is doubtful.  We would probably rather she stay a little longer just to get over the need for O2.  We do think Friday might be more likely and are hopeful that she will be ready by Friday so we can get back home.

We are blessed that she is at a hospital much closer to home than U of M.  I dropped Hope off at the hospital this morning so she could be with Momma today.  She was able to do school and spend the entire day with her mom.  The rest of the kids were dropped off by their uncle after they finished school so they also could spend time with Momma and Faith.  It makes things much easier than our stays at U of M.

The issue now will be the bleeding and figuring out the issue.  Doctors still aren't sure what the problem is so we will have to watch Faith for signs of bleeding and take her to the hospital while she is bleeding.  We have stumped the doctors, or Faith has...hmmm...and she's only 3.

Monday, January 16, 2012

EXTUBATION....Day 7

I dropped by the hospital for a few minutes at lunch today to walk in and find my little Faith with NO breathing tube shoved down her throat.  She had a face mask on with O2 running at 12 liters which is quite high, but she was doing pretty well.  They are watching her to make sure her breathing doesn't get too labored.  They might switch to high flow to help blow her lungs open if necessary.  She sounded really junky, but it is much easier to cough and get the junk out.  We are excited to have taken this step because intubation often makes her take longer to get over the sickness, although she needed it to get past the worst stages of RSV and this H flu.  She was dancing and smiling since she was free.  She kept moving her arms around almost like she thought...if I keep moving them, they won't tie them down anymore...I'm free...I'm free.

Saturday, January 14, 2012

Daddy, Daughter Time...Day 5 in PICU

Well, here we are again, Faith and I, spending the weekend together in the PICU.  She has been asleep most of the day so I haven't gotten to watch her dance as I did yesterday when visiting.  She is resting very comfortably right now with a 130 heart rate, 29 respiratory rate, 100% O2 level, and a 48 CO2 level which are all good.  Her breathing looks much easier than the past few days; although, she continues to sweat at times which is curious because this is usually a sign that she is struggling.  She is still intubated and will most likely be for the next few days.  When we first came in, the doctors initially guessed that she had viral pneumonia, but after testing, it was determined that she has RSV.  However, something else was recently determined.  She also has the H Flu.  This child knows how to show these folks she is tough, but I wish she would quite showing off.  We would like to go home and hang out.

The two of us are watching the Saints try to come back against the 49ers, but we are much more interested to watch Tim Tebow and the Broncos take on the Patriots.  Faith has been excited all day for this game.  I think she wants a Tebow jersey.

Day 4 (yesterday)...Faith is feeling better

video
Faith is feeling much better, but we still need to get her over the RSV so she can be extubated.  After this is done, we still have to figure what is causing the bleeding.  She had a blood transfusion yesterday.  This is the third time she has lost enough blood to require a transfusion.  We figure it will be several more days before Faith can get out of the hospital.

Thursday, January 12, 2012

RSV...Day 3 in PICU

Sorry I haven't gotten any photos to share.  Today Faith is still intubated.  She had a better night and Jesi got some sleep which was was badly needed.  I stopped to see Faith and Jesi for a few minutes during my lunch and the techs dropped by to do an ultrasound for the purpose of checking her blood flow.  I am not sure of the results because I forgot to check with Jesi when I dropped back by after work.  I don't think it really showed much of anything though, but will update if I learn something new.  When I walked in this evening, I immediately noticed that she was quite puffy...should nick name her puff the magic dragon.  She appeared to be retaining water as he eyes were swollen along with many other parts of her body.  They were going to look into the possibility of lasix to help her get the water out.  This will only happen though if her lungs are collecting any water.  She is kicking this stuff out, but it is making her look rough.  Her breathing looks like a lot of work, but her stats are quite good including heart rate, breathing rate, O2 level, CO2 level, etc.  With the help of God, she will knock this RSV out.

Wednesday, January 11, 2012

RSV...yuck

Faith had a colonoscopy done today, but they did not find anything definitive.  She will have an ultrasound tomorrow to look at the blood flow around her kidneys and intestines.  Well, Jesi called me after the colonoscopy to update me and let me know that Faith has RSV.  For those who don't know, RSV is a harsh respiratory infection.  Faith had been getting a shot each month during the winter to protect her against getting RSV.  Well, our brilliant insurance company would not approve the continuation of the shots because they are quite expensive and they don't authorize it on children over 3.  The obvious, Faith is not a normal 3 year old.  So now she has RSV and the brainless insurance company is going to be stuck with a bill that dwarfs the cost of the shots.  Now I understand the realities of business and the expensive shots, but this seems like a no brainer business decision to get the shots in order to avoid a crazy PICU bill from the hospital.   Now they will have a ridiculous bill and my daughter has to suffer through fighting off this crazy sickness.

We appreciate all prayers as Faith is currently intubated to help her breathe and get over RSV.  She was resting somewhat comfortably when I left, and I hope Jesi can do the same since she didn't sleep much last night staying in the hospital with Faith.  On a positive note, the intubation went very smoothly...thank you jaw distraction. God is good.

Tuesday, January 10, 2012

Hospital is Back....Really?

Yep, we just got back from Faith's Wish Trip and the boys had gotten a bug right before we left Florida.  Well, they shared it with everyone in the house including Faith.  She is in the hospital not simply because she is sick, but she has viral pneumonia.  When they got to the hospital, Faith's O2 level was running between 72-82 which is quite low.  This was even using the bipap through the night.  And, she started bleeding from her rectum again so obviously the surgery did not fix her bleeding problem.  Now, it does appear that the bleeding starts when she gets sick, but we will have to keep looking for the problem since it hasn't been fixed yet.  Faith is resting much better now, but needs to get this junk out as it is nasty.  The boys have sounded horrible for days, and I haven't been much better.  She just went in the hospital today, but we all got to see her through a video call before the kids went to bed.  That was nice since they got to say goodnight to Faith and Momma.

Wednesday, January 4, 2012

Final Days in Florida after leaving Give Kids The World

We headed to Epcot to hopefully get some photos with the princesses.
Photo with Snow White
Photo with Belle and the Beast...good story with this photo.
Sleeping Beauty poses with the family.
We grabbed this photo on our way out of the park.
We enjoyed watching the Buckeyes at the Gator Bowl.
We were all decked in our Ohio State gear and having fun.
I just couldn't resist this picture.
We hit the beach at St. Augustine on our way back to our hotel.
Faith was a bit tired so she couldn't really enjoy the beach as much as the rest of us.
She did enjoy the limo ride back home...she looked out the window all the way home.
Our trip to Epcot was mainly to meet the princesses and take pictures.  Hope really wanted to see Belle, but as we walked around not many characters were in sight.  We finally saw Snow White.  As we entered France, we saw a line and at the end of the line was Belle.  They had just closed the line and were not allowing any others in the line.  However, we had the special Wish Kid pass so I showed it to the guy.  Well not only did we get to jump to the front of the line, but Belle escorted us there holding Hope's hand as we walked.  Then we took a series of photos with Belle and the Beast.  Hope was thrilled and as usual Faith enjoyed it as she did all the characters.

The Gator Bowl was quite fun even though the Buckeyes lost to Florida.  We were seated between both bands which got a little crazy at times because they both played at the same time.  Even though our time at the beach was short, it was nice and made us want to have a vacation where we leave the beach house and walk a few feet to the beach and then walk back.

We are grateful to Rainbow Connection and Give Kids the World for making this trip possible.  It was truly a blessing from God for our whole family and we will remember this trip.

New Year's Eve Fun

Boggy Creek Airboats...Faith danced during the whole ride...she loved this boat ride.
We got to see lots of wildlife including this gator along with turtles, snakes, and birds.
This airboat ride was probably one of the funnest things we did on our trip.
After the airboat ride, we hit the pool at Give Kids The World and spent the day here.  We watched bald eagles flying overhead as we swam on this beautiful 80 degree day.
Faith loved riding this elephant at GKTW...she would sit and hang for the ride.
The evening was spent at a birthday party and Faith got to go on stage for her birthday.
It was a fun and full day...Faith was ready to go to sleep after the party.
Faith was amazingly happy on the Boggy Creek Airboat ride.  At first, she got mad and cried when we put the ear protection on her, but once she got used to it the dancing started and continued throughout the boat ride.  This day continued at pool side and was so beautiful.  Then we went to a weekly birthday party at GKTW and they also celebrated the New Year just the way we like it...they rung in the New Year at 9pm sharp.  It was the perfect relaxing day without all of the running from park to park.

Sunday, January 1, 2012

Faith's Wish Trip...Day 5

Faith and Momma are getting the day started.
Here we got to meet Indiana Jones and Marianne...or the actors in the stunt show at Hollywood Studios.
Faith was enjoying the day and loves the shows as you will see.
This is the car stunt show and they have added in a part for Lightning McQueen.
Here Faith is doing some walking at the Honey I Shrunk the Kids playground...video to come.
Here we are in the front row for Beauty and the Beast...great front row seats.
Faith is truly enjoying Beauty and the Beast...this has been fun for her.

Hollywood Studios has the most amazing light display that I have ever seen.
We finished the day with a party at Give Kids The World...Faith is tired by this time.
Faith has really loved this trip and we have seen a lot of her personality interacting with a variety of the characters.  This trip to Disney's Hollywood Studios was fun for the whole family, but I think we loved the lights the most.