Tuesday, November 8, 2011

Spina Bifida Clinic

Last week Faith had her semi-annual Spina Biffida Clinical appointment. During this visit Faith's entourage of Doctors & Therapists come to the clinic and check up on Faith to see how she is progressing. It is a great appointment for the Doctors to regroup and adjust the plan for continued growth and therapy and discuss any issues that we are encountering along the way. All of Faith's Doctor's love seeing her and they are encouraged to see how well she is doing. During this visit we received tons of great news.


New Doctor

During this visit we were privileged to meet Faith's new primary doctor at Children's Mercy, Dr. Gratny. Dr. Gratney is on a special team dedicated to kids on ventilators. This team will be on call for Faith 24/7, a nice perk for Vent kids... Faith somehow knows how to get all the perks :) Dr. Gratney spent some time with Faith and got to know her pretty well (Faith let her see one of her blue spells). Dr Gratney seems very nice and is definitely going to be a great advocate for Faith's health and development.


Lungs

Dr. Escabar (the Pulmonologist) was very encouraged by Faith's improvements over the last few weeks. After about a week of being on the ventilator at night Faith has been able to support herself throughout most of the day without the use of oxygen! PTL!!!! Dr. Escabar's plan is that Faith will continue to be on the ventilator at night to help expand her lungs and prevent apnic events. His hope is that after couple of weeks with a good track record, Faith can go without oxygen or a monitor all day! Come on cordless baby!!!

While Ashley and I do share Dr. Escabar's enthusiasm, we are very nervous about taking Faith off of the monitor. We do not want to risk Faith's health just to get rid of a piece of equipment and she has a tendency throw us curve balls from time to time. Please pray for continued improvement on her part and wisdom on ours as we prepare to make this transition.


Urology

People have been asking how Faith's kidneys are doing. To hear that Faith's reflux had gotten so much worse was very concerning, even for us, but during this appointment Dr. Murphy (the Urologist) informed us that her kidney's are just fine. We are now cathing Faith every four hour's during the day as a preventative measure against kidney damage and infection. This sounds like a lot of work, but it really is a very simple procedure and is just a quick step during her diaper change. It was great to here that no harm had been done to Faith's kidneys. PTL!


Occupational Therapy

We have been working very close with the occupational therapist in the last few months and Faith is taking more and more food by mouth all of the time. We have continued to push back Faith's swallow study until there is sure to be some information to be gained from it. Taking on baby foods is definitely getting easier for her. Over time we are to start watering them down to help her learn how to manage liquids without aspirating them into her lungs. It has been a slow process that has been very interesting to watch. Sometimes she just doesn't seem interested in eating by mouth. Who would have thought... a Pfeifer/Grindal who doesn't love to eat :)


Speech Therapy

That's right... you heard me... we got to hear Faith talk!!! Dr. Gratney gave us a Passy-muir valve. Now that Faith is old enough and breathing without the help of oxygen we can place this device on the end of her trach. The valve allows air in through her trach but not out. The air that she breaths out is then force up through her normal airway and through her vocal cords, enabling her to make sound. And what a sweet sound it is.

As expected she didn't like it at first, as you can see for yourself on the movie below, but as we continue to use it breathing out her nose and mouth won't be so strange.




We have been trying to make her laugh with the valve on, but it dosent seem to work to well. I think she laugh's so hard it makes her uncomfortable. Still fun to watch though.




Thanks for your continued prayers.

Love,

The Pfeifers

Thursday, October 27, 2011

Run with Faith

Thank you every one who participated in the run with Faith. As you can see in the video below it was truly a success. A special thanks goes out to Faith's aunt Allison for organizing the event. Her dedication to Faith has been truly humbling.

Thank you everyone!

Much Love,

Team Pfeifer


Tuesday, October 25, 2011

Follow up to Kidneys

We received a phone call from CMH letting us know that it would be best if Faith would be cathed every four hours.  This would help the pressure off her bladder and it would also help all that urine going back into her kidneys.  However, they did say that her kidneys look healthy and this will hopefully keep them in good condition.  On Monday, a week ago we went to CMH to learn how to cath Faith.  It is a VERY EASY thing to do.  The whole process takes about two minutes.  She will be doing this her whole life.  Faith holds so much urine in her bladder, I'm sure she has been in pain with it.  She just doesn't have that control to be able to release it when she needs to go.  Since it's been a week we really feel like it has been helping her moods.  Yes she is still passing out, but we feel like it has been because she isn't getting her way or she is mad for some other reason. Side Note: I often think about how I want to ask Mr. & Mrs. Ezzo, the author of Baby Wise and Growing Kids God Way, What is your advice about letting your 10 month old baby have their way, if the consequents is they pass out if they don't win.-please no answers, she will be getting her way until she stops passing out or she is old enough to know what's really going on.

Thursday, October 20, 2011

Kidneys

We made our way to CMH for three clinic visits all about Faith's Kidney's yesterday.  In January 2011 Faith had all three of these tests done and we found out that one of her kidney's has a slight reflux, grade 2 out of 5.  They told us not to really worry about it, that sometimes they will fix themselves.  So we did what they said and didn't even think twice about the reflux.  As I said yesterday we went and did the same three tests.  We did not speak with our kidney doctor, he is suppose to be calling us on Friday with more information.  The first study that was done was a Urodynamic/Uroflow study.  This shows how much urine Faith holds before letting it release into her diaper.  They also test her urine to see if there in any infection.  The second study was a Renal Ultrasound.  They took pictures of Faith's kidneys and bladder.  The third was a Coiding Cystogram.  This is where they take x-rays of her kidneys and bladder with urine in them, while the urine is coming out, and while the bladder is empty.  We were told yesterday that when you have a reflux in your kidney your bladder in never really empty.  Right after the last study with the x-rays that Doctor was able to tell us what he saw in the x-rays he took.  I WAS NOT NOT NOT EXPECTING WHAT HE SAID NEXT... The reflux in her right side was a 2 and is now a 5 (the worst grade) and the left side (which before had no reflux) is now a 4.  He went on to tell us a few options on what the kidney doctor might say but he also said before you repeat these options I would speak with him first.  We were about to leave the x-ray room when the first nurse who did the Urodynamic/Uroflow came back into the room holding a basket with a needle in it.  She then explained that Faith's urine had come back positive for bacteria.  Since she had so many different things done to her kidneys today that this shot of some short of antibiotic would help her.

Definition: By Mayo Clinic Staff....

Vesicoureteral (ves-ih-koe-yoo-REE-ter-ul) reflux is the abnormal flow of urine from your bladder back up the tubes (ureters) that connect your kidneys to your bladder. Normally, urine flows only down from your kidneys to your bladder.
Vesicoureteral reflux is usually diagnosed in infants and children. The disorder increases the risk of urinary tract infections, which, if left untreated, can lead to kidney damage.
Vesicoureteral reflux can be primary or secondary. Children with primary vesicoureteral reflux are born with a defect in the valve that normally prevents urine from flowing backward from the bladder into the ureters. Secondary vesicoureteral reflux is due to a urinary tract malfunction, often caused by infection.
Children may outgrow primary vesicoureteral reflux. Treatment, which includes medication or surgery, aims at preventing kidney damage.

Sunday, October 2, 2011

Neuro/Pulmonary Update

Neurosurgery


We called Faiths Neurosurgeon to request an interpretation of Faith's MRI. The conversation was brief and all good news. The MRI revieled no new developments or concerns PTL! Infact, the only change they saw from the scans was that the pocket of fluid in the middle of her spine has decreased in width and increased in length. This is not a concern as long as we have not seen any loss in motor skills (which we have not). Neurosurgery said that everything looked great and they would like to see her in clinic in 6 months. They will continue to watch her as she grows.


Pulmonology


Last week we had a pulminology appointment to see if they would adjust Faith's bi-pap settings. Faith sleeps with a bi-pap at night to help her maintain good oxygen and CO2 levels while she sleeps, she has some difficulty with this. While she seemed to do well on it when we first came home, she seems to have grown out of the settings, her sleep has become wrestless and her oxygen levels keep dipping.


Durring Faith's appointment, the Pulmonologist informed us that bi-paps are not designed for infants. And in faith's case the settings are not precise enough for Faiths needs. He told us that Faith should be on a ventilator at night. Ashley and I didn't like hearing this. From the beginning we have been praying that Faith dosen't have to be on a "life support" machine. But the doctor went on to explain that in Faith's case the ventilators function would not be much diffrent than the bi-pap. It would just help her sleep more comfortably and safer. Hearing this made the idea much easier for Ashley and I to swallow.


In order to be trained to use the new piece of equipment Faith will have to be admitted to the ICU for up to two days. We are still waiting to hear back on when this appointment will be scheduled.


Fun Stuff


Tonight we attended the annual church event at Gary's Berries. We had a great time. ALL OF US! I took Faith down the slide twice. This is something I did with both of the other kids in the years past and wanted to do with Faith too. I was tenative at first, but after some coaxing from my wife and a few friends, I decided Faith had it in her. She loved it! And it was good for me too.


Enjoy



Thursday, September 22, 2011

Waiting...

Still waiting on results from MRI.  Just waiting on Doc to call us back....

Friday, September 16, 2011

More to Come...

The Doc came and got us out of the waiting room after Faith had been back in XRay fo about 1hr 30mins. I honestly thought something was wrng because they told us 2 hours.  BUT PTL everything went so well they finished early!! Then we went back to the recovery room and she woke up on her own and so soon she was perfect! They told us she could just go home! No spending the night!!! We have no results we will call Dr.Hornig on Monday.

Update

Faith is out of her MRI and doing well. The nurse said everything went great and ran very smoothly. Hopefully we can get out of here soon, thanks for your prayers.

MRI

It's now 9:12am. We made it to CMH this morning at 7:00am. We stayed the night at the Ronald McDonald House last night, it's about a block from hospital. They took Faith back at just about 9am. They say it will take about 2 hours for all the scans they are wanting. Then the plan is to go to a room on the floor and stay until we talk with a doc and if Faith is acting normal then we will be able to go home. Praying all goes well and we sleep in our own beds tonight and not in a chair or the hospital room couch. :) Thanks so much for all the prayers.

Monday, September 12, 2011

The Plan

The swallow study didn't happen on Friday, we rescheduled it for October 27th. The OT we see in clinic at CMH said Faith is doing really well but wants to wait one more month. IF Faith was to fail this test we would have to wait 12 months before retaking the test, due to the amount of radiation she will be receiving. We want to take no risks and just pray she will pass this test next month! We have been giving her some baby foods and thickened water to start with. We must be careful that she is not aspirating any fluid that is going into for mouth.

This Friday Faith will be having a follow-up MRI (Sept. 16). The last MRI she had showed fluid up and down the whole spine. If there was a collection of fluid where the spine wouldn't be able to handle it then she could lose mobility in her limbs. PRAISE TO THE LORD, she is still moving all around! Those arms and legs go everywhere! :) She is rolling from side to side and sitting up some on her own, not to long but she is sitting. Faith's appointment is at 7am. CMH called and said to pack a bag just in case we would need to stay the night there on Friday night. Faith will have to be put under anesthesia to have the MRI done. The hospital will have to monitor her and make sure she is acting normal before sending her home. Pray we won't have to stay the night.

Tuesday, August 23, 2011

Run With Faith

Friends and Family,

Faith's Aunt Alison has so graciously put forth her time and efforts to organize a charitable run/walk for Faith. If you are interested in participating in the "Run With Faith" event click on the link below and follow the directions to get registered. Thank you so much, Aunt Alison, for all of your hard work. And thanks in advanced to all of you who plan on attending. We are humbled by your generosity and dedication.

Run With Faith

We love you all so much,

Mic, Ashley, Mason, Elizabeth, Faith

Wednesday, August 3, 2011

Update from last post...

Faith made it 3 weeks without passing out!! Then Sunday night she had another episode.  This time we are shooting for 4 weeks!!!!

The ENT appointment went really well, actually better then I thought.  Dr. Julie Wei said all positive things about Faith.  She said that her neck and trach site looked really good and really clean. Go team Pfeifer for keeping it so clean! :)  She also said she was going to scope her and I just looked at Dr.Wei and she said don't worry Faith taught me last time who's in charge. (last time faith turned blue and passed out) Dr.Wei went on to say she will be scoping her threw her tach.  She won't feel a thing that way.  It was really neat, I got to look in the scoop and see what she was talking about.  Dr.Wei said Faith's skin color and airway looked "gorgeous".  She thinks the larger trach is fitting well.  As she was looking in the scoop she also said that it looks like Faith has some what of a  floppy skin, which can be normal on some people.  She said it could be a possibility that the floppy skin could be covering up the trach when she is baring down.  Which would be like someone putting tape over your mouth and nose.  Which then would lead her to passing out due to no air/oxygen passing through.  That is just another theory but still no one knows for sure why she actully turns blue and passes out...

The OT appointment went really well too!  So fun to see faith getting a spoon!  She is getting thicken water.  Sounds boring but it is a great start to hopefully getting rid of the feeding tube!  Her at home therapy or practice before her swallow study is to have 5 spoons of thickened water every other day.  We don't want her to aspirate (the water go in her lungs instead of her tummy) the water.  We also put food coloring in the water so when we are suctioning her if we see the food coloring we know she is aspirating the water and will stop the the feeds and call the OT.  So far NO aspirating!! We all take for granite that our tongue knows what to do when we put something in our mouth, we are retraining hers. She can eat/drink with the trach.  The trach is down her airway or trachea and you swallow food/fluids down your esophagus.




Below is a picture of her with the blue thickened water and her spoon!  Here she is about 6 1/2 months old.

Few Pictures




Sunday, July 24, 2011

Windshield Time

This week Faith will be seeing the ENT and the OT at Children Mercy Clinic.  On Monday we will see the ENT for a trach check.  Faith received a larger trach about three weeks ago.  She went from a 3.0, which is the size she had placed originally, now moved up to a 3.5.  Kinda fun, just shows she is growing!  The ENT will just be following up with us.  I really hope it is an easy appt. with no complications.

Then on Tuesday we will be seeing Faith's OT.  This is a very big appt because she will be starting to practice putting fluid in her mouth.  She will be having a swallow study on September 9 and this is to help her practice.  She hasn't had anything in her mouth except for toys and her pacifier.  We all take drinking and eating for granite. One thing she has to learn is what to do with her tongue when there is a substance sharing that space.  She will also have to learn how to swallow larger amount of fluid.  The only thing she is swallowing now is her own saliva.  If she does well and passes the swallow study then we will be able to start giving her bottles again!  I really pray that she adapts to all the new things that will be going into her mouth.  I will also pray that she will continue to breath while she is swallowing.  Before when she would drink from a bottle she we would have to turn her oxygen up and she would also drink to fast.  I will keep you all posted.  Thanks so much for all your continued support with our baby Faith!

Tuesday, July 5, 2011

Growing

6 Months Old!
Hard to believe it has been 6 months!She is growing so well! She is now 17lbs and still a happy baby! She has three teeth all in front and on the bottom. I can start to feel something on the top so we will wait and see when their going to come in.

We went to clinic and saw the Pulmonologist at Children's Mercy, he recommended a bi-pap machine for Faith. This bi-pap will help with her levels of CO2 and help keep her lungs open all night. This machine blows air into her lungs and opens them and then pulls air out. I think this is going to be a good machine to help possibly get her off the oxygen during the day. If she can get her lungs open so she can take deep breaths then she won't need any help! Also, while we were there today we were talking about how Faith has been growing but yet she has the same trach as when it was originally placed. He sent us down to x-ray and then back to his office. He spoke with Faith's ENT and decided it was time for a new larger trach. I think this new larger trach will be more comfortable for her.

On Monday we went back to CMH via ER. Mic and I were telling Faith that we want to come home tonight and NOT be admitted as inpatient. When we arrived we went right to a room. (I guess if you have a shunt you get moved to the top of the list-no questions asked.) The nurse asked us and what brings you to the ER today? We found blood in her diaper. They changed her diaper to get her weight and there was more blood. The nurse said I am glad you brought her in. That made me feel better since we were thinking about waiting and calling in the AM. They took a urine sample and while they were getting it blood was coming out along with urine. They tested it and came back and said UTI. This would be Faith's third UTI in less then a month and a half. So there is some concern. We wait and see how she does on the drug they want her to take. Pray that it works!

Monday, June 20, 2011

A Cherished Fathers Day





Yesterday we celebrated fathers day by dedicating Faith to the Lord at Topeka Bible Church. It was a bit nerve racking not knowing if we were going to get choked up while speaking to the congregation, but we did well to keep it together. Check it out below.





In preparing for the dedication it was good to reflect on all that has happened in the last six months. Being able to see how the Lord has worked in so many diffrent ways makes it easier to look foward into the unkown and trust that he has a plan. The heart felt support of our friends and familly, the drawing of believers and unbelievers alike toward a great and mighty God, and the strength and warm smile of our little girl Faith make a Dad proud to be just tiny piece of his of his great plan.

As I was thinking of all the things I would like to say durring her dedication, one of the thoughts that came to mind is how I would have asked for none of this (heck I still ask him to take it all away), but all of the wonderful things listed above would have never come to pass had Faith not been born the way she was. Looking back I wouldn't have it any other way.

Im reminded of our first post. Our verse for Faith remains unchanged. Jeremiah 29:11 For I know the plans I have for you, "delares the Lord," plans to prosper you and not harm you, plans to give you hope and a future.

Lord,
Thanks for the opportunity to be their father, to be able to see your great works through them and to know what it means to love, as you have loved us.

We got a good video of Faith laughing last week, enjoy! Oh yeah and thanks to everyone who came to her dedication, it really meant a lot to us.



Saturday, June 18, 2011

Faith Dedication

Please pray for Faith and our Family as we will be dedicating Faith at church tomorrow.

We love you all Mic, Ashley, and Family

Saturday, May 28, 2011

Faiths sleep study went well in the sense that they got the information that they needed. The process of hooking her up, however, did not go as smoothly as last time. The technician said that it is not uncommon for kids to dislike sleep studies the older they get. Check out the video.





As you can see Faith had a lot of gear hooked up to her and the process of getting everything put on her took about an hour. During this process Faith got mad, turned blue and passed out about three times, pretty much one right after another. It wasn't fun, but she slept well after we got her all wrapped up.


After the study was over the next morning, while we were taking all of the equipment back off of her, Faith had another three or four blue spells....but who's counting right. Faith was quite the trooper and eventually, we got her all cleaned up. She was definitely ready to go home and so were Popop and I.




We have not received the results of the sleep study yet, but the technician said it went well and that they got a lot of good information. Thanks for praying for us while we were up there. We love you all.













Monday, May 23, 2011

Sleepy Time

Tonight Faith and Mic will be going to CMH South for Faith's second sleep study.  Pray that all goes well and that Faith sleeps all night, as she does at home.  The study starts at 7:30pm goes to 7:30am.  Mic will be sleeping in the same room with her.  We have posted pictures on a previous post from her previous study.  I will be sending the camera with Mic and will post new pictures later this week.  Pray also for the car ride, as Mic is going alone.  Lord, Please be with Faith and keep her happy and content with NO blue spells while in the car. Amen.

Friday, May 20, 2011

Thursday, May 19, 2011

Clinic

Tuesday, we had an ENT and Kidney appointment. at CMH. I will give a brief summary of what happened. We are excited to tell the ENT Doc that we could hear noise coming out of Faith's mouth, some crying, and some humming sounds. On the other hand we were nervous that the ENT doc was going to scope Faith and she would get mad turn blue pass out and the doc would want to admit her. They called Faith's name while we were in the waiting room, all five of us went back to see the doc, Nurse Linda, Mic, Elizabeth, Faith and myself (Mason had preschool then went and to hang with aunt holly and cuz eliajh). Everything was going perfect no news really just telling ENT doc what's been going on. The doc looked at the trach said it was looking good. Then she wanted to scope Faith. To "scope" means they take this little camera and in your nose and down your throat then they can see your vocal cords. The doc placed the scope in and Faith was MAD the scope didn't even make it past the inside of the nose. You must take a breath for the "doors" to open in your throat so the camera can go down and Faith was not breathing. Faith went on to blue and the did pass out but came back on her own. The doc didn't even say anything about readmitting her!!! PTL!!! So the scope was worthless with no results. But I am glad they tried anyway.

The Kidney appointment was more for monitoring her high blood pressure. They still don't know why Faith even has high blood pressure. She will always be a mystery. :) She has been on two different blood pressure meds, they decided to try taking one away and keeping her on the other. Pray with one med her blood pressure stay at a normal reading.

Monday, May 16, 2011

Get The Tissues Out

This song really hit home so I had to post it.





Thanks for your prayers.

Saturday, May 7, 2011

Home Again

There has been alot going on in the Pfeifer home the past two weeks. First of all Faith has been home a record, YEAH!!!! We are SOOOOO excited she has decided to stay home this time. The other day I was sitting out in the living room with my son Mason, age 4 and he looked over at Faith in her swing and said, "Mama I am so happy Faith is still home." That means more to me then anything, to hear the words of my 4 year old's heart, pure love for his new sister!

We have a home health nurse, Linda. She has been wonderful! She is just what I need to be able to live somewhat of my new normal lifestyle. She has been sent from heaven for me or should I say for Faith. With Linda here I am able to leave and run my errands and spend time with the other kids and not have to stay home all the time. I would be staying home most the time if she weren't here. She has fit in just wonderful.

We went into CMH this last visit for Faith's blue spells. Well she is still having them, but she is recovering on her own!! PTL!! We have not had to "bag" her in a little over a week! Praise straight to the Lord! It is soo scary to see your child turn blue then go on to turn gray. But when she takes that first breath after a blue spell it is a wonderful sight to see her skin pink!!

She still has high blood pressure, well she doesn't with the drugs they have her on. Below is a picture of the drugs she has every morning at 9am with her breakfast-formula. I don't mind giving so many to her, because they really do help her! Those doctors know what they are doing, most the time. ;)






We had our first Special Care Clinic appointment. We were there for about four hours and saw the following...OT, PT, Dr.Hornig-neurosurgery, Dr.Murphy-urologist, Rehab Dr, Orthopedics Dr, Peds Dr, social worker, nutritionist, and I am sure I am forgetting someone. It is a wonderful program they have at CMH (that's were clinic is) where all the doctors come to us and we stay in one room. We will have separate appointments for ENT, general surgery and the pulmonologist, they do not attend the Special Care Clinic.

I will only speak for myself....The past 8 months have been the hardest months of my life. I have been though some hard times but nothing like this. Just think of your child being sick with the flu and there is nothing you can do. That is what it has felt like, helpless. We found out Faith was going to have special needs at 20 weeks in the womb. I want to make it VERY CLEAR I have never been mad or upset with God. Faith is a true blessing! But I have asked him many times Why?



I know there is a reason why she is here. I can tell you she has touched more lives in the past four months then I have in my life time. I hear stories from people who read this blog about how Faith has been a true inspiration to them personally or to there family. I have been out and about (four different times) and someone will hear me talking to my kids about "Baby Faith" and they will stop me and and say "Are you baby Faith's mother?" and I say proudly "Yes I am". Remember I have no idea who these people are and they go on to tell me they pray daily for Faith and our family. The Lord is so faithful and he does provide in times of need. She is one chunky, big bright eyed, beautiful, little girl making a very BIG impact! When I am rocking her I just stare at her and think the Lord has so much in store for you.



The Lord made us just the way he wants us to be.

Thursday, April 21, 2011

Home Again

We did not get to see Neurosurgeon or the Pulminologist today. The Neurosurgeon had a much more serious emergency surgery he was performing all day long and the Pulminologist happened to stop by while I was out having breakfast.

In spite of all that, our outstanding and very proactive General Pediatric Doctor did manage to get a hold of them both and asked them what their recommendations were for Faith.

The Pulminologist said that the most resent drug that they have been trying on Faith seems to have helped her blue spells. For the past three day's, even though Faith still has her breath holding spells when she gets upset, she has been coming out of them on her own without us having to give her breaths. Praise the Lord! Her recomendation was to go home and continue her "cough assist" treatments at least until Faith's next sleep study in May when she can undergo further evaluation.

The Neurosurgeon said that the MRI did reveal that the fluid in Faiths spine had gotten larger through out the week, but until she was showing some physical symptom that this was effecting her he did not want to intervene. He will be seeing her in an outpatient visit in the coming weeks to keep an eye on her progress.

So Faith was discharged from the hospital around 5:30 this evenening. Everyone is home and sleeping in their own beds. It is very nice to be home. Please pray that Faith continues this streak of good health. Thank you so much for your prayers. We will keep you posted.

Love,
Mic and Ashley

Short update

The MRI was taken last night about 5:30PM.  We are waiting for Dr.Hornig to come by and fill us in on the results.  He has been in surgery all day today.  Please pray for wisdom.

Tuesday, April 19, 2011

MRI

I was here at CMH yesterday to sign some paperwork for Faith to be able to get the MRI, and no MRI.  So the doctor told me the hope is to have her be the first on the list at 8am in the morning.  I was up and on the road at 6am got here so I would be able to sign off on the paper work.  If the MRI is scheduled for 8am the patient must be in their office at 7am to be able to start the anesthesia process.  So I got to CMH at 7am and I wasn't even in Faith's room yet and the nurse came up to me in the hall and said the MRI isn't going to happen today.  I said "WHAT?!"  She said it will happen tomorrow at 4pm.  So stay tuned for a new post in the next few days.

Monday, April 18, 2011

I added some videos to the videos page.

Thursday, April 14, 2011

Breathing 101



Although Faith enjoyed her visit with her favorite Neurosurgeon he did not bring her many answers. While he did agree that her breath holding spells were probably a neurological issue, he informed us there is nothing he can surgically do about it. His recommendation was to defer to any solutions the pulmonologist had to offer.



Non-related to the breath holding spells the Neurosurgeon brought some good and bad news regarding Faith's most recent MRI.


Bad news - A new pocket of fluid has developed inside Faith's spine around vertebrae C7-T1 this condition is called Syringomyelia. None of the symptoms associated with this condition have shown them selves, but the potential for complications with this issue down the road is possible. I won't go into the details, but the complications are not cool. Please pray that this does not become an issue. Additional MRI's will be performed durring our stay to monitor the situation.


Good news - The cyst in Faith's cerebellum that the neurosurgeon was debating on addressing with a stint during her last visit has subsided. While he is not sure what, if any, issues this cyst was causing, our hopes are that this cyst is somehow related to her vocal cord and swallowing issues.


To partner this good news with something else that had happened earlier in the week. A doctor was putting a tongue depressor in Faith's mouth and Faith gagged! (For those of you just tuning in, Faith's inability to gag is what got her the G-tube) Ashley got really excited about the achievement and exclaimed "She Gagged!". The puzzled doctor tried to explain everything was okay and that she didn't hurt Faith. Ashley replied "No! that's great! She wasn't doing that before!.... Can you do it again?" "Sure" The doctor replied, surprised at the strange request. She did it again and sure enough, Faith has got her gag back.


We hope that this means she has regained control of her swallowing and vocal cord function as well, but haven't taken any steps to see yet.



Upon further consultation with the Pulmonologist he informed us that the CT scan revealed some portions of Faith's lungs are collapsed. The best way I can describe this is in the picture below. He said that this is not uncommon with kids who have been on a vent for a while, and it is now hindering Faith from taking full breaths. He thinks that if we treat this condition then she could potentially get off of the oxygen!!! Please lord heal those little lungs!


The treatments to help expand her lungs are called Cough Assist treatments. They work by filling her lungs with a little more air than she would and she naturally does the exhale on her own. During her treatment she was exhaling through her mouth and she was making noise! (See video below). While this does not necessarily mean she has her vocal cord function back, it sure was nice to hear her voice again.






The pulmonologist's initial suggestion to prevent the breath holding spells was to put Faith on iron and one other inhaled medication that had potential to prevent these spells from happening. After a one day trial period on these two medications Faith had two episodes. The Pulmonologist removed her from these meds and said he would like to see if her Cough Assist treatments do the trick. We will wait and see.


Thanks for checking in and all your prayers.


Love,


Mic and Ashley

Wednesday, April 13, 2011

Waiting

We are now waiting for Dr.Hornig to come by and tell us the results of the MRI.  Dr.Hornig will be coming by sometime today, he is in clinic and will come when he has a break.  Faith also had a CT of her chest.  One of the doctors on her team came by and told us the CT of her chest looks clear. As soon as we know what the results are of the MRI we will post. 

Tuesday, April 12, 2011

Today

It's now 10:30am on Tuesday and they just told us Faith will be having an MRI today at 3:00pm.  We'll keep you posted...

Monday, April 11, 2011

We're back

 Faith has been turning blue and not recovering on her own.  I knew that today was going to be the day that we ended up coming back here.  Yesterday while at church our home health nurse called and said that Faith had another one of her episodes.  That means she has turned blue around 10 times and we have had to use the "bag" about six times.  I spoke with the Pulmonologist Doctor and the Neuro surgeon's nurse practitioner on the phone today and they both said we needed to bring Faith to the ER.  We arrived at about 4:30pm and at about 7:20pm moved to the floor.  So they are admitting her but the hope is the docs will see her tomorrow and then we will go home. Fingers Crossed. :)  Please pray that this is truly a short stay.  Thanks so much.  We will keep posting.

Sunday, April 10, 2011

Blue

Just a quick prayer request.  Faith keeps holding her breath when she is mad and stops breathing.  I will be calling a few of her Doctor's in the morning. Please pray that she stops holding her breath.  She turns blue from lack of oxygen and then we have to use the "bag" which is just like mouth to mouth but with a trach.
Also tomorrow is when our nurse starts, Linda.  Please pray that it goes well with her!
Thanks as always for all your prayers and thoughts!!

Wednesday, April 6, 2011

Changes

There has been alot of changes in the Pfeifer home the last few days.  We have moved Faith's room to a larger bedroom.  She just has to much stuff and the equipment is on all the time and heats up the room.  I have seen the UPS guy everyday since we have been home from the hospital delivering supplies for Faith.  Since we have moved her the room it has been alot better temperature and the space is soo nice! 
We have been interviewing nurses to come and help out with Faith all day, 8:30-4:30, M-F and on Sunday morning so we are able to go to church and not take her.  We have found a christian woman to be our full time nurse and we are still looking for a Sunday nurse.  The full time nurse, Linda will be starting on this coming Monday.  Please pray that it will work out with her.  Since I am a stay at home Mom we will be spending alot of time together. 
I have been on the phone more then I ever have getting all the details worked out.  I have signed my name more in the past week then I have in the past year, there is so much paper work.  My mother, Phoebe has been here so much at our house helping out, I won't of survived without her.  Thanks Mom!!
Faith's Best Friend, Claire Barker came to see her in the hospital and decided to nap with her. :)

Brande has been so much help to me!  I am so glad she is around to help me keep sain.

Mason has held Faith Everyday since she has been home!  The best big brother ever!!

This banner was here when we got home on Wednesday from the hospital along with an awesome dinner! Thanks Sharron & Laura!

Mason took this picture.  I think Faith likes it here at home.

MiMi holding Faith

Friday, April 1, 2011

Faith's New Room

It has been a pretty busy couple of days getting Faith moved in. I know Ashley has a lot of pictures she would like to Post, but for now here is a video of Faith and her new room. Thanks for checking in!


Wednesday, March 30, 2011

Sometimes a picture is worth a thousand words.


Faith loves to smile at her Mom


Hopefully we will be home by dinner tonight.


Thanks for all your prayers.



Sunday, March 27, 2011

To the Floor

On Friday we went up to see Faith in the morning and when we arrived to the PICU, her nurse told us Faith will be moving to the floor soon.  We were so excited!  In another words that means she is getting better, everything is going wonderfully and she no longer need to be in the ICU. Praise the Lord!

When Faith was moved to the floor later that day, we spoke with her doctor and he said if everything stays the same or keeps getting better then we could expect for Faith to go home on Wednesday.  Since we have been in this boat a few times now, we will only be excited when she is in the carseat in our van on the way home.  Then we both will know she is really coming home.  They will not discharge Faith if any of her numbers are off, like her temp or gets any kind of infection.  Please pray that her health stays well and she remains strong.

I went and saw her today and she looks wonderful!  She told me she is ready to come home! :)  Ever since her trache was placed I really feel like she has been awake and more alert more.  My theory is because she no longer has to work so hard to breath she can use that energy being awake and looking around.  However she is still on that puff of extra oxygen so please also pray that she will soon, very soon grow out of needing that and she would be able to breath completely on her own.

As for helping me out...With Faith having the G-Tube (feeding tube) placed we will be feeding her through her stomach.  There is a "button" on her stomach where we will be attaching a tube to feed her.  With that being said, Faith is in need of some 3-6 month shirts, not onesies and no snaps in the crotch area, a true shirt.  This way we will be able to pull up the shirt and attach the tube and not have to take off shorts and then unsnap her shirt.  The true shirt will make it so easy.  The only reason I am adding this in the blog is because I have looked many many places for shirts 3-6 months and can not find any.  If you find a store please let me know.  Thanks!

Tuesday, March 22, 2011

No more ventilator!!!!

A few videos for your viewing pleasure--->


A beautiful bright eyed girl with a trache and g-tube just a few hours after surgery on Monday.





Removed the ventilator at around 2:00AM Teusday morning. A happy Dad gets to hold her.

No more ventilator!!! Get that sucker out of here!

Monday, March 21, 2011

She's Out of Surgery...Again

Faith is out of surgery! Everything went great. She is now in recovery and it is sooo nice to see her face without any hoses or tape on it. The chubby cheeks do exsist and they are beautiful!!! I will post a picture as soon as I get a chance.


Thanks so much to everyone who is thinking of us today. A special thanks to these two ladies who brought us some munchies to enjoy while we are here. The lady on the left, Melanie, is a blog follower who we have never met until today. The lady on the right, Stephanie is one of my brother, Travis' friends. These two ladies are in a bible study together.

Melanie Sloan and Stephanie Claunch

Another special Thanks to Mimi (phoebe) and Papop (doc), Don and Linda Verge, and Aunt Alison and Cousin Hudson for coming to hang out with us while the surgery was in progress. Of course MANY other thanks go out to everyone else who has been helping us in many ways and thank you so much for your prayers.

Here we Go!!

They have taken her back and we just heard that they have already started!!!  (it's 11:00am)  Hope just a few hours and she will be back in her room!!!

Surgery Today

We just got word that the surgery time will be around 10:30am, so in about an hour.  Keep checking the blog and we will try to keep it updated!  The Lord is at work, because one of the surgeons just came by and said there is normally never time on a Monday in OR.  Normally they are doing cases that came in from over the weekend or scheduled out patient.  Thank You Jesus for the time slot today!!!

Thanks so much for all your prayers.

Sunday, March 20, 2011

Surgery Scheduled

Surgery has been scheduled. Until today, it looked as if surgery would not be until later in the week, but today a slot opened up and we are now scheduled for surgery tomorrow (Monday). This is a relief. Now that Surgery is inevitable, and Faith has been intubated once again, we don't want to wait any longer than we have to.

Faith will be having three procedures performed; a tracheostomy, gastronostomy, and a fundoplication.

-Tracheostomy (trache)- In this procedure a tube will placed below Faith's vocal cords that will allow free passage of air to her lungs.




-Gastronostomy (G-tube)- In this procedure a tube is placed as a direct feeding line to her stomach. Since Faith is incapable of protecting her airway while drinking we will feed her through this tube instead of a bottle to prevent fluid from going into her lungs.


-Fundoplication (Fundo)- It is not uncommon to perform this procedure with a gastrostomy. The tightening of the esophagus prevents reflux from occurring. Faith has pretty severe reflux and this will help her not to vomit.



While we would prefer that none of these procedures be performed on Faith. It has become apparent that she needs them for the time being. The good news is that the trache and g-tube are reversible. The doctors have told us that it is not unreasonable to think that Faith will eventually grow out of the issues. So we will continue to take it all day by day. Please pray that the procedures go well and we will let you know as soon as she is out.

After these procedures, if all goes well with recovery, we will be headed home within a couple of weeks. Yippee!!!

Thanks for your prayers.

Thursday, March 17, 2011

Moving Forward

We went to Children's Mercy tonight to see Faith and to Skype with the Grandparents who live in Billings, MT (Mic's Dad and Stepmom).  They called and were in need of a "Faith Fix", so we made it happen via web cam. :) 

While we were there today Faith's Attending doctor and main pediatrician resident doctor came by and talked with Mic and I about the next step for Faith.  Of course we were hoping they would say, "well you can take her home tomorrow", but he didn't.  Faith will be going to surgery to have a tracheostomy and a gastrostomy next week.  We know having this done will be a major lifestyle change but we are really ready to have her home, and are ready to make any kind of change to make that happen.  God has been very faithful.  We have many praises even though we don't necessarily want the trache and g-tube.  We still see many blessing everyday that God has and is giving our family.  This has been my verse from before Faith was even here and was still in my womb...

Jeremiah 29:11  For I know the plans for you, declares the Lord, plan to prosper you and not to harm you, plans to give you hope and a future.

I know that the Lord has already written her story and I am soo excited to see what the next chapter will bring.  I know there is hope in our future!  And I have no worries about what the Lord will bring us because he is holding Faith's hand when I not able to be at the hospital at her bedside.  And when I am there I feel him there with me. 

Mason (age 4) went to Vacation Bible School last year and we had purchased the music soundtrack CD from the church, Prince of Peace.  I know that God works in the smallest ways but on that CD there is a very up beat version of the song Today is the Day and it is the best song.  Today is the day the Lord has made let us rejoice and be glad in it (Psalm 118:24) .  When I hear that song I know that Today is the day not yesterday and not tomorrow but Today.  We live one day at a time and that is hard for me to think about.  I like to have all the plans and details worked out on paper, but God has shown me that he is in control and we need to live one day at a time.

Our new normal will be hard, but we both know that we can do it because God is on our side!  We have an awesome family and body of supporters who pray for us all the time.  We just had a 24 hour prayer chain that happened last weekend but I really think someone somewhere is praying for Faith and our family all hours of the day.  Thank you for all your prayers!  We really do feel peace about what's going to be happening next week.

Tuesday, March 15, 2011

Now We Wait....

Dr. Hornig (neurosurgery) stopped by yesterday to tell me he will not be doing anything about Faith's shunt. He went on to explain that after placing the shunt (at birth) her ventricles became a "healthy small". Now that they have more fluid in them they are a little more "plump" and still a healthy size. Dr. Hornig comes into Faith's room everyday to check her fontinel (soft spot). If the fontinel is enlarged or full then the shunt has stopped working and would need to be replaced. This is not the case for Faith, her fontinel feels perfect!

Elizabeth and I went and saw Faith today while Mason was at preschool. I spoke with the entourage of Doctors on Faith's case and they said since Faith has started to cough some and has a lot less secretions (saliva) in her throat, nose and mouth, they would feel better if we waited until next week to proceed with the plan of placing the trache and g-tube. I am really praying that through this experience God's light will be shown to the Doctors. We serve an awesome God! So, we will wait and pray for Faith over the next week to see if she will continue to progress with in the area.

Thanks for all your prayers and support.

                             From Today's Visit! 11 weeks 1 day and 9.9 lbs

Monday, March 14, 2011

Relapse

Friends and Family,

I am sure you have noticed that I have not updated the blog in sometime. I don’t like to be the barer of bad news and Faith’s situation has gotton worse over the past week. While Faith has been able to breath on her own, the doctors did not feel that her breathing ability was improved enough to take her home. The doctor’s concern was that Faith’s vocal cords were still paralyzed and that if any unforeseen event occurred (respiratory infection, fever, allergies, etc.) her airway could close up and put her in a very risky situation.

In addition to breathing issues it seems that Faith has also lost her ability to swallow. This means that the muscles in charge of protecting her air way and moving fluid down her throat are also paralyzed. Instead of feeding Faith with a bottle she is currently fed through her nose with a tube routed to her stomach.

On Friday we met with all of the specialists associated with Faith’s case. The plan was to perform a CT scan Monday to review the cyst in her brain. If the cyst was larger the Neurosurgeon would place a stint to allow this area in her cerebellum to drain. If the cyst in her brain was the same size or smaller the Neurosurgeon would do nothing and Faith would go to surgery to have a tracheostomy and a gastrostomy. In short the trach would be a tube below her voice box that would allow her to breath, the gastro would be a tube directly to her stomach that would allow us to feed her. Both of these items can be removed and heal back up in the event that she grows out of these issues.

This was the plan...

Over the weekend Faith began showing signs of relapse. The night nurses reported that Faith was having more apneas and what appeared to be mild seizures. Up to now it seemed that these issues had been resolved by her decompression surgery, so this was very alarming. Today the CT scan revealed that Faith’s shunt had stopped working and fluid has begun to collect in the upper ventricle of her brain again. We are waiting to here from the Neurosurgeon, but we assume that he will want to perform surgery as soon as possible to replace the shunt.

Ashley is with her now and we will let you know as soon as we know more.

Thanks for your prayers.

Saturday, March 5, 2011

More Pictures

We have added some pictures to the Album tab. Check them out!

Friday, March 4, 2011

Still going strong

Just a quick update to let you all know that Faith is still breathing on her own. They have her on a 1/4 liter of oxygen, and she still has some strider when she's awake but the doctors, feel like she is doing well. If she continues on this track until Sunday, they will move her out of the PICU to a normal floor. We are making progress toward coming home. Very exciting.

Thanks for all your prayers.

Going Strong

It is now 5:57am and Faith was extubated around 5:00pm last night and she is STILL going strong with NO breathing machine!!!!  ALL PRAISE to the LORD!!!  Please keep praying!  She slept from about midnight to 5:30am on her tummy.  I think she has missed being on her tummy due to all the tubes for the breathing machine.  She has a feeding tube threw her nose and it is on a slow but continuous flow of formula.  We will just keep updating as the day progresses!

PS-HAPPY BIRTHDAY DAD! LOVE YOU -ashley

Thursday, March 3, 2011

Here We Go!

They will be by soon to extubate!!!! Within the hour! PRAY!!!

One step at time

The Doctors stop by and said we are going to start the weaning process of the breathing machine.  If all goes well then they will extubate her late afternoon or early evening.  We will then see how she does and that will determine the next step.

Sunday, February 27, 2011

Rough Week

It is not our intent to complain, but to let you know how things are, this week has been pretty taxing for both Ashley and I. Our emotions have run high, our patience has been tested, and Faith has shown little improvement. All the while we wrestle with God's plan and pray for healing, strength and good decisions. We have faith that God is control, but sometimes its hard to see the forest for the trees.

The objective for the week has been to ween Faith off of the respirator to see what improvements, if any, have resulted from her most recent surgery. Due to her breathing issues Faith is in the PICU (Pediatric Intensive Care Unit). The unit has been very busy this week with a lot of kids in much worse shape than Faith.  As a result our case had been pushed to a much lower priority level. Lots of waiting for the staff to get to us. Finally by Thursday things had calmed down enough that the staff was able to give Faith the attention that she needed. She was removed from the ventilator at 9:00 on Thursday morning. Ashley and I spent all day with her. Her vocal cords had not improved. It was tough for us to watch her struggle so hard to breath on her own. By 8:00PM we decided that we should go home while the nurses continued to watch her. At 2:00AM Friday the decision was made that she should be put back on the ventilator. Disappointing news for the both of this, but she really does breathe easier on the respirator, which is a relief.

So whats the next step? The doctors are going to give Faith a CAT scan on Monday to see what is going on with the lower ventricle in Faith's brain. From that CAT scan the Doctors will decide whether or not a stint still needs to be placed to allow for better circulation in her brain. Regardless of their decision to place the stint, if Faith's breathing does not improve over the next week, they will most likely insert a tracheal tube in her airway to permit her to breath on her own. This will be there last resort, but we have been informed that this is where things are headed.

Thanks for your prayers and thanks for checking in.
Mic and Ashley

Monday, February 21, 2011

Its not like its brain surgery or anything....

Faith is in recovery now. Her surgery lasted about four hours and the doctor thought it went well.

The findings of the surgery were very unusual, in fact the Neurosurgeon had never seen anything like this development in his career. This might be a bit confusing so bare with me. During Faith's decompression surgery last month there were a few layers involved for her closure. From inside to out they went in this order...

1. Muscle tissue and spinal nerves
2. Dural Graft (this is like a patch over all of the exposed tissue to prevent leakage of spinal fluid while the dural membrane heals up)
3. Gel substance (not sure what this layer is for)
4. Skin closure

What the Neurosurgeon found during this surgery was that the gel substance applied just below the skin had some how got in under the dural graft and worked it's way into Faith's cerebellum causing the enlarged ventricle we saw in the MRI. Since this was not trapped cerebral fluid pooling in her brain, the doctor felt that a stent was not necessary and that all that was required was the gel substance to be removed from her cerebellum. He also discovered that the same gel had collected around the brain stem. He felt that while it was unlikely that this development would cause Faith's issues with her vocal cords he has not seen this before and did not rule the possibility out.

Time will tell. The doctors have already put in an order to begin weaning Faith off of the respirator.  We are not expecting to much so soon after surgery. We will keep you all posted.

Faith is back in surgery

The Neurosurgeon met with us this morning to review Faith's MRI. He dosen't know what would be causing the partial paralysis of Faith's vocal cords. His bigger concern was a swelling ventricle in her cerebellum in the brain. He believes that this ventricle is concerning enough that a stent needs to be put in today. The placement of the stent will be in an area of the brain that presents some risk to the surgery because some large blood vessles in this area may produce heavy bleeding. He also will need to cut out the portion of the skull that he avoided last timewhen he performed surgery in this area. Please pray that this will all go well.

While the swollen area in the cerebellum is a major concern for the Neurosurgeon he does not feel this is related to the problems with Faith's vocal cords and breathing. The vocal cord function would be controled by the area already addressed by the previous surgery. The Neurosurgeon feels that this development does not fit with all of her other functions contininung to get better. He thinks that there should be other symptoms that would develope with poor vocal cord control. His plan is to revisit the area he worked on earlier to make sure that everything is healing correctly and there is nothing he can see on the MRI. If he finds nothing our hope is that the enlarged ventrical is some how related  to the issue. Please pray that this issue is resolved with this surgery.

Faith's surgery began at 2:00 they have checked in once at 3:30 to let us know that everything is going okay. We well let you know how it went as soon as she gets out.

Thanks for all your prayers and for checking in
After much deliberation on Sunday the ENT and Neurosurgeons here at Children's Mercy have decided that there is a possibility that Faiths airway restrictions could be the result of partial paralyses of Faith's vocal cords. This diagnosis is much more complicated to resolve than the throat surgery discussed in the last post. Dr. Hornig (Neurosurgeon) will be here tomorrow to discuss the details of this condition and possible solutions.

There is some good news. Faith was put under sedation and on a respirator for her MRI. She was weened off of the respirator and it was removed at midnight last night. Faith went five hours without any help!!! This means her brain is now sending the correct messages regarding how much to breath. Her previous brain stem decompression surgery is working. However as the evening went on her airway began to close and although she still fought for every breath on her own it was decided that until a solution is found to free up her airway she need to be put back on the respirator.

We will keep you posted on the Neurosurgeon's recommendation as soon as we know more.

Saturday, February 19, 2011

Round 3

This Week
It has been a fun week to have everyone at home, trying to settle in with a new baby in the house. As the week progressed, however, Faith has been developing some noisy breathing. Initially Ashley and I were not concerned. We thought that this was just typical baby noise, but as the week went on, when she was agitated, Faith's breathing became more laborious and unusual. Friday night Ashley's brother Tyler (an ENT doctor) took a look at Faith's airway with a scope. He diagnosed faith with Laryngomalacia. Laryngomalacia is a condition which the muscle tissue around her voice box does not withstand heavy breathing and collapses as she breathes harder. Tyler said that many infants with this condition are just told to wait until they grow out of it as long as there oxygen levels remain stable, they continue to eat, and gain weigh. Faith was doing all three so we went home with the intent of taking her to Children's Mercy on Monday for a closer look.

Friday Night
Over night Faith's condition seemed to worsen she was starting to fight for air all the time, not just while she was agitated, and she was harder to calm. This morning around 8:00 during one of her episodes her oxygen saturation began to drop. We didn't waste any time. I hopped in the van with Faith to go to Stormont ER while Ashley stayed at home with the kids. Halfway to the hospital Faith calmed down and her oxygen saturation levels returned to normal. We made the decision to turn around, pick up Ashley and head for the Children's Mercy ER.

Good ol' Children's Mercy
Like always Children's Mercy has been great. Tyler called ahead and spoke with the ENT about his findings on Friday night, which definitely sped the diagnosis process up in the ER. Thanks Ty! The ENT took a look at her airway with a scope and decided that while it was possible that her Laryngomalacia was causing her breathing issues, he wanted to consult the Neurosurgeon to rule out brain stem compression causing her vocal cords to be weak. The Neurosurgeon feels that this is highly unlikely, but is performing an MRI on Faith tonight to be sure.

Over the next few days we are going to put faith on a stronger reflux medication to see if this reduces what could be swelling in her airway. If this works, problem solved, we go home. If this does not work there is a minor surgery that can be formed to free up space in her airway. We hope that it does not come to that. Time will tell.

Thanks for your prayers

Sunday, February 13, 2011

Home

PRAISE THE LORD!
FAITH IS HOME!

We brought Faith back to Topeka around 3:00 on Saturday. We stopped by Mimi and Papa's, to pick up the kids. We stayed there for a while so Mimi could get her "Faith fix". The rest of the evening was just us and the kids at home. Needless to say everyone was happy to have her around, even if all she was doing was eating and sleeping. Thanks for all your prayers.




Thursday, February 10, 2011

What this week has looked like.



After Faith's surgery Grandma Melanie came down from Montana to watch after the kid's for a week. This was at the expense of her own sick day's at work. We are so grateful that she came down and the kids loved her being here. Thanks Grandma for spending the week with us!
We took advantage of Grandma being here by spending every day with Faith during her recovery from surgery.  The Neurosurgeon feels that her incision is healing extremely well. There has been a build up of cerebral spinal fluid under her incision (feels like a tiny water balloon under the skin). This development was anticipated and may go away over time.

Now Faith's neck has healed and we have begun the process of preparing for discharge, but Faith's health situation has not remained consistent. Over the past four or five days she has caught a stomach flu, had a few sporadic apneas, and a spell of low blood pressure. Faith has overcome all of these things and is doing very well. The doctor's would like to see Faith in a state of good health for at least 24 hours prior to discharge. We would love for Faith to come home, but 24 hours seems like a pretty short period of observation, as crazy as her health has been over the last few days.

Faith will continue to be on a monitor and oxygen when she comes home in order to ensure her blood/oxygen levels stay where they should be. We have been set up with a company named Apria to supply us with all of Faith's oxygen needs. They delivered the items below.


If Faith continues to do well, she could come home as early as Saturday. We are nervous and anxious to see what life is going to be like after the hospital. Please pray for Faith's continued health and growth when she comes home.

We love you all,
Mic and Ashley.



Here are a couple of our favorite Doctors at Children's Mercy



Dr. Jang Plastic Surgeon



Dr. Hornick (Crazy Hair) Neurosurgeon



Wednesday, February 2, 2011

Recovering in a snow storm.

Faith is doing really well. Her first 24 hours of recovery were very sore and pretty cranky, which is to be expected for a surgery like this. After the appropriate does of the right narcotics was administered it was pretty smooth sailing from there.

We are anxious to see improvement with her apnias, but the doctor said it could be a month before we do. Thus far there has been no change as far as we can tell, but we are watching and waiting patiently while she heals. Bare with us while we wait. It might be a while before anything changes.

Here is  a video of Faith a few hours after surgery. She would fuss unless we patted her chest, I guess she just wanted to be sure we were still there.


Here is a picture of her incision today. All of the doctors say it looks outstanding.

Monday, January 31, 2011

Shes out of surgery!

This is what we all look like when we get news.




The neurosurgeon just paid us a visit. He said that everything went well and Faith is in recovery right now. She will be there for another 30 minutes and then we will meet her in Pediatric Intensive Care Unit. She will spend the next couple of days there and then be transferred to a regular room.

The doctor had all good things to say about the surgery. He said he removed all of the lamina on C1, a portion of C2 and even less of C3. He said that he visibly noticed a relief of pressure on the brain stem by removing these bones. The scull was not causing any issues, so he left all of the scull intact.

We are looking forward to seeing her. Thanks for checking in.
Here is a picture of our visit on Saturday. The kids can't wait to bring sister home.




Faith is off to surgery again. No news yet, but we did get a little bit of clarification on what the surgery entails. The doctor told us that they will not actually be removing the supporting structure of Faith's spine, but taking a portion from it called the lamina. Although the picture below does not depict the exact scenario in Faith, it does give you an idea of what the doctor will be removing.




The x-ray below depicts the portion of the skull and the C1 lamina that will be removed. Most likely faith will have the C2 lamina removed as well.


The doctor expects the surgery to take about two hours, so we don't expect to hear much until around 12:00 AM. I will post again as soon as we know more. Thanks for checking in and for all your prayers..