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

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.

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

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.

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

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.