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.

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.

I added some videos to the videos page.

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

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. 

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...

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.

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!!

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

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!