Thursday, July 31, 2014

All Good News

Maggie had an MRI today that showed an overall decrease in swelling.  Also the cyst on the right side of her brain had decreased significantly and the one on the left was just a little bit smaller.  This allowed her to be finally transitioned to boot camp the rehabilitation floor where she will be off the monitors and scheduled for intensive therapy at least 3 hours a day.

Maggie's physical improvements have resembled her MRI changes.  Every day she is more verbal and more active.  This includes her decreased need for sleep.  These 2 pictures were taken on different evenings, in different rooms, and late at night when Maggie was having a private party long after bedtime.



On another note, our favorite fellows wrapped up their service with the hospital today.  We will miss Sylar, my Mandarin speaking friend, and the doctor with great shoes (I leave their names off so it doesn't show up on some google search).  Anyway, they all came by to say goodbye and even stayed a minute to chat.  I love that Maggie has made an impression on them and that they will most likely remember her long into their practice.  One of them is coming back Saturday on a social call to play his guitar for her.  How sweet is that?  

This is the point in her recovery when the other doctors go ahead and admit how much better she is doing than they ever expected.  One of those conversations was today with the doctor who treated her in the Cardiovascular ICU.  He was the one who took her personally down for one of her CTs several weeks ago.  We saw him in the MRI suite and he admitted that he never thought she would look as good as she currently does and that her early films don't support her presentation.  Every time someone says something like that, I have the opportunity to brag on all of those who are praying.  God has worked a miracle in this child.  Thank you for your prayers. 

So now we start the next chapter of this journey.  Please continue to pray for us.  I would really like a few days at home all together as a family before the kids start back to school.  




Tuesday, July 29, 2014

One Year Ago Today

It was one year ago today, Monday July 29th, 2013, when my team was starting our first day at an orphanage in Baoji China.  I remember clearly that everyone had gone to their assigned rooms and I was casing the place and getting a feel for what their physical therapy needs were.  I walked outside where there was a class of one year olds in baby walkers all tied together (to avoid escapees).  I glanced over the sea of black hair and brown eyes and there was the cutest set of dimples I had ever seen.  Maggie was looking right at me as if to say, "you found me".  I knew in that moment that she was special and the rest is history...

(This was taken the next day when I was working on my computer and snatched her for a screen shot to send Trent so he could see this precious little one who stole my heart)


We have had several good days in a row now.  Every day she seems a little bit better and a little more functional.  They postponed our MRI until Thursday because CV Anesthesia is no longer available tomorrow.  That then postpones when we can start on the rehab floor.  It is a bit frustrating but there is really nothing we can do about it.

Prayer Requests:
1. For the MRI to look BEAUTIFUL.  It would be awesome if her abscesses were gone.
2. For continued recovery to her previous functional level.
3. For stamina for Trent and I as we try a new system of switching off every 24 hours.
4. For her WBC count to improve.  It is a little low and they are re-testing it on Thursday.  I am really not sure of the significance but the infectious disease doctor wasn't pleased with it yesterday.



Sunday, July 27, 2014

Learning to Conquer

I have been thinking lately that my experience lately with God as Father has felt a lot like how I parent my tween. As a special needs kiddo walking through that stage of life where everyone wants to be cool and sometimes they achieve that by picking on those who are different, Jack has had some tough days.  My first response is always to comfort him.

2 Cor 1:3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort. 


I will hug him and tell him how sorry I am that he is having those experiences and I give him a place to be real honest with me. Like my conversations with Jack, I have had some opportunities to be real honest with God these last few weeks too.  Having a safe place to say what I am thinking and how I feel about what has happened with Maggie has been key to my continuing to seek God authentically through this experience.

My next feelings with Jack are usually to want to rescue him from what he is experiencing.  I have thoughts of withdrawing him from school or other scenarios where life is hard, but then my lenses of eternity set in and I realize that rescuing Jack is not necessarily what is best for him. There is a greater goal and purpose for his life and sometimes I have to let him walk out his trials in order to develop the character he needs to achieve his purpose.

James 1:2-4 2 Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.


Like my parenting of Jack, I don't think God has rescued us from this situation because He desires to do something in and through us.   I believe He is building a testimony for Maggie and that even as a 2 year old, He is using her to draw others to Himself.  He is also turning her into a fighter and He is going to use that to make her into the person she needs to be in order to tackle whatever comes next. 

My message to Jack always ends as one of empowerment.  I know he has what it takes to conquer what life sends his way and through Christ he can do anything.  The same is true for Maggie, the same is true for me, and the same is true for you.

Phil 4:13 I can do all this through him who gives me strength.





I LOVE Mandisa's music because it makes me feel like I can face whatever comes my way.  This has been one of the anthems of hers that I have listened to when I have felt defeated through this.  We were created for a purpose and life's trials aren't always set backs but steps toward developing us into the people we need to be to live the life we were called to live.   





PRAYERS-  My little warrior has had 4 great days.  She has continued to improve without set backs.  On Monday they are going to transfer us to the rehab floor for 4 planned weeks of intense recovery.   It would be awesome if she could break records and wrap that experience up in 3 weeks so we could have a few days before the big kids go back to school.  

Here is a picture of her playing with a good friend of mine.  Thank you again for all of your prayers. 


Thursday, July 24, 2014

Lenses

God is regularly teaching me that the quality of your life is not dictated by your circumstances but instead by which lens you view them through.    I say "regularly" because I seem to have to learn this one over and over.

When I am at my weakest and most vulnerable, I tend to put on my entitlement lenses.  Those are the ones that tell me I was entitled to a summer with my kids complete with swimming, movie nights, vacations, and good times with friends.  They tell me that Maggie had already been through enough and that this extra dose of suffering is an injustice to this child.   Those lenses were purchased at the store of the sheltered suburban life that was built with the bricks of comparison.  They tell me that success is measured in accolades and acquired possessions and that no matter how hard I try, I am never going to measure up.   I hate those lenses but somehow I hold them in my pocket for safe keeping.

   When Trent I were first married, I went years without updating my eye glass prescription.  When I finally did, I remember walking outside and noticing the leaves on the trees and the details all around me.  I had seen it before but I had slowly grown so accustomed to my blurred vision that I didn't realize it wasn't normal.  Trading my old lenses for the right prescription brought everything into focus.  The same thing happens when I trade my lenses of entitlement for my lenses of eternity.  

Experiences like mission trips, adoptions, loss of a loved one, and long stays in the ICU will give you that new set of lenses to view life with.   You are suddenly reminded that life on earth is short when compared to eternity.  You learn to see disasters, abandonment, and other crisis as an opportunity for God to reveal Himself as redeemer.  You see your possessions as gifts instead of trophies and you use your natural abilities as opportunities to do good instead of reasons to draw attention to yourself.  You are less likely to shy away from those who make you uncomfortable and more likely to take their struggles on as your own.  And you smile.  You smile because you know that there is a greater purpose.  You smile because you know that you don't have to worry about measuring up (like you do with the entitlement lenses) but you accept that you have already won in Christ.

I am not saying that life through the lenses of eternity is easier.  Often those who wear those lenses have seemingly more difficult days but they do life better because they have hope and perspective.

That is what God is teaching me today as I watch those around me and ponder what I have been given.  Thank you for praying for Maggie.  She is continuing to improve and we are hopeful for no more setbacks.



Wednesday, July 23, 2014

Better Than I Hoped

So today went a lot better than I expected.  I know that sounds awfully pessimistic but when we were transferred back to ICU, I kinda lowered my expectations.  Maggie started on Heparin today so we were monitoring her very closely for neural changes but she did great and was even spunkier than usual.  Her pain level is down in her arm which helps a lot.  They did not perform her Wednesday MRI today because they got the CT scan last night and plan to repeat that tomorrow.

On a fun note, I was able to go home today and do some laundry and even take a bath in my own tub.  It is the little things that really make a difference for your state of mind.  There was a present waiting at my house from a good friend for Maggie.  It was an all in one instrument and she loved it.  It was fun to see her playing for once.


Overall, she was much happier today with her pain under control.  Tomorrow morning bright and early, they will repeat the CT to make sure the Heparin is not causing any new bleeding.  If it looks good, we expect to go back to the step down unit.    That would be amazing because those rooms are so much more comfortable.

Thank you for all of your prayers.  We are ready to be done with scary set backs and just move toward recovery.  She is moving her left side more and is looking to the right now.   We aren't sure what she can see but it is certainly an improvement.  


As always, you guys are amazing and continue to blow us away with your encouragement.  Thanks for loving my girl.

Tuesday, July 22, 2014

Up--Down--Up--Down--Up

You know that part of the roller coaster where you go through a series of ups and downs that make your head spin so much you feel sick?  Well I think that adequately describes the last few days.

Let's see,  Sunday night I sent Trent back to the Ronald McDonald House to get a full night's sleep with the plan that he would relieve me in the morning.  Well at 5:00 I get the news that we are moving from the ICU to the PCU and oh yes your husband called and he has pink eye so he can't come back until he has been on antibiotics for 24 hours.   I think my response was something like, "Are you kidding me? Pink eye? When was the last time a grown man got pink eye?"

So back to Monday, Maggie started having increased hallucinations.  They performed an EEG and discovered seizure activity in her occipital lobe.  We aren't sure why but a change in her meds has helped with those.


Monday afternoon she started complaining of left arm pain and by night time was really hard to console.  I noticed her oxygen sats were dropping into levels that I had never seen them before.  That activity and discomfort continued into today.  They performed an ultrasound and discovered a clot in her arm.  At first it was reported as deep and then as more superficial.  

This is significant for many reasons.  Her onset of symptoms 3 1/2 weeks ago was left arm pain and now it was back.  We had ruled out clotting disorders after both areas of her brain had grown the same strep bacteria and the clotting tests came back negative so why a clot again?  And what is up with her oxygen sats?

Most of the day was a meeting of the minds.  We were thankful for one MD who really stood up and took charge.  He reminded me of Gru from Despicable Me.  I kept waiting for him to finish his sentence with "mom I made a prototype of a rocket out of macaroni".  If you haven't seen the movie, you should and then you would know what our doc sounded like.  He was great and went to bat for us with all of the other teams who were disagreeing on the best treatment. 

They performed a CT of her head and chest and reported no pulmonary embolism, the areas of her brain are either unchanged or just a little bigger, and nothing on her occipital lobe to explain the seizures there.  This landed us back in ICU to begin a low dose of Heparin.

Here are ways you can pray:
1. That the Heparin would address any clots but not cause bleeding.
2. That she would have relief from her pain and get some sleep.
3. That the areas on her brain would really begin to heal.
4. That God would show Himself to us in ways that we can't miss.  That He would combat the lies of the enemy in our heads and bring peace to our souls.
5. That my other kids would be fine and continue to have fun where they are.  Jack is with a friend and the wonder twins are living it up with my sister. 


Once again, thank you for loving my girl.  I am off now to let a baby sleep and enjoy take out pizza in the ICU kitchen with my (recovered from pink eye- thank heavens) husband (who gets the night shift tonight- Amen).  :)

Saturday, July 19, 2014

Those Who Have Gone Before Me

Different things encourage me each day.  One day it might be a donut with sprinkles from a coworker who knows my weaknesses.  Another day it will be a text from another friend or a visit from an unexpected photography client who took the time care about me personally.  All of those things are amazing and give me the strength I need for the next 1/2 hour but what really keeps me going, when I feel like I can't do it anymore, are the stories of faith and redemption from the ones who have walked this path before me.

I would love to share some of those with you because who knows they might be stories you can lean on someday too.

#1 My Aunt Mary- I have watched my Aunt Mary (who is like a mom to me) grieve the tragic loss of her husband and then her son.  She was devastated and at times I wondered if she would ever recover.  Through it all, she held onto Jesus.  She would quote scripture and tell me that Jesus was the only way she could survive.  I remember her saying that Jesus is the only one who will always be there.  Others will pass away but Jesus will never leave us so how could she walk away from Him.  Her faith has influenced me more than anyone else.  If she can hold onto and even go after Jesus with what she has endured, so can I.

#2 My Friend Joy- My friend Joy has 3 daughters with challenging medical needs.  At different points they have all been critical.   She has been sending me songs and encouraging messages through this.  She said something the other day that I have not been able to shake that I think is so true: 

"I pray that Maggie will get to spend a lifetime here blessing your family. I also want to encourage you because I have almost NEVER heard a person in this world say that it would be a blessing for a child to go to heaven...but HE has shown me that it can be so. My prayer daily is "Jesus come quickly" as in, take us all - today - now - together :) I can't stand the thought of ever sending one of them ahead of me but I know He has shown me that the world has that one wrong. He conquered death. I kind of think that if you go to heaven as a young person, while we are all horrified by something like that, all the souls there celebrate and say "how great, you only had to stay for a short while" and if you go as an old person, while we celebrate a LONG life, there you hear "bummer man, sorry you had to stay so long down there but so glad you are here now!" I may be very wrong on that but I think our world has the value of a lot of days held way too high"

Joys words remind of Philippians 1:21 "To live is Christ.  To die is gain."  
I think Joy gets it and she has inspired me to look at life with a critically ill child differently as well.

#3 The Steven Curtis Chapman Family- Okay I obviously don't know the Chapman family personally but most of us know their story and that is precisely why they give me hope.
They tragically lost their adopted daughter, Maria, several years ago but God has used her story to inspire other families to adopt and give to their non-profit.  That organization built  an orphanage in Beijing called Maria's Big House of Hope and has helped fund thousands of other adoptions.

Seeing God's redemption of their tragedy gives me hope that Maggie's suffering is not wasted.  I pray that He takes her story and uses it to draw others to Himself and to consider adoption.   I know He can redeem her suffering in ways that I never imagined and I hope to get to see that first hand.   The Chapman's story gives me hope in a redeeming God.


So TODAY's UPDATE:  Maggie was fussy most of the day but then they decided to give her the magic narcotic that turns things around.  I hate giving her such strong drugs but it really does make all the difference when she is hurting.  She seems a little stronger today but it was hard to tell because she chased off the PT and OT who stopped by to work with her.

My sister, brother in law, and father drove into town to see her and then take the wonder twins back tomorrow.  Trent let me leave and go have dinner with them and that was a real blessing.

We are still praying for complete healing, energy for the days ahead, and emotional health for all of us.  Thank you for your prayers and encouragement.





Friday, July 18, 2014

A Really Good Day

Today was a great day.  We hit stride again on this marathon and ran our way through the middle of the mountain.   I am convinced this turn around is because of everyone's prayers and the prayers of our deacons when they met last night.  I may have to pay those men to meet and pray for my daughter more often.

Maggie had a more content day over all.  They only down part was that she spiked a couple fevers that prompted a few blood tests, a chest x-ray, and another antibiotic to the list.  However, you wouldn't have known it by her disposition.

Trent spent most of the morning at home with the kids and then returned with Sam and Ruthie.  When they entered the room, Maggie lit up.  It was the happiest I have seen her in 3 weeks.  She even giggled once when Sam was playing peek-a-boo with her.  I love seeing her little personality peek back through.  It's like I was telling my friend Paige tonight, we can work on the physical challenges but it's her spirit that will make that so much more successful and encourage us along the way.

On another positive note, we were given a room at the Ronald McDonald house down the street today.  This will save us a lot of money on hotels and is a real blessing to have so close.  I took Sam and Ruthie back there this afternoon for a little while and they enjoyed playing in the game room.  It is a strange place to be because you are flooded with feeling of gratefulness for the availability of the facility and then those feelings are matched with sadness that you need it.   No one imagines that they will ever need long term housing in the medical center.  It is a strange reality when it lands on you.

So back to the amazing day.  Here are some cell phone pictures of my warrior princess enjoying her visit with her brother and sister.  Jack wasn't there because he will be visiting a lot next week when the wonder twins are with my sister.



Thank you to everyone who has been praying.  Please continue to pray for complete healing and for the emotional health of our entire family through this journey.

Thursday, July 17, 2014

The Last 2 Days



Sorry I didn't update last night. My husband covered it on his blog and I really didn't have anything to add.  Basically Maggie had surgery again last night to drain the other abscess on her brain.  They left her intubated from the morning tests and waited on the surgeon to be ready.  That took longer than we hoped so it was late when everything wrapped up.  Watching her come out of anesthesia this time was pretty scary.  She was gasping for air and the look on her face was one of terror.  I kept telling her to breathe and wanted with everything I had to take away her pain and fear that was so intense that she was holding her breath.

Today was mostly about pain control.  She has slept most of the day and screamed only when she was messed with.  I started telling the residents that if they messed with her, they had to settle her.  She didn't get "looked at" near as much today.  One of our new MD friends from another floor came down to check in on her today and hang out for a few minutes.  He talked about how fascinating her case is for all of the doctors and new residents.  I get that but today she needed to be left alone and I needed to be the one to make that clear.

They are supposed to be taking the drain out of her head tonight.  Apparently that will be a little uncomfortable and is done without anesthesia.  I will be glad when it is out though because it will make it easier to hold and snuggle her.  Also, she is starting to swell again which I am not a fan of that.


Okay just some observations and fun things to share.

*The medical center is an interesting and diverse place.  The photographer in me is itching to spend a day photographing people on the streets.  Today on the way to the hospital, I watched a physician step over a homeless man who was laying passed out on his stomach across the sidewalk.  At lunch, I walked passed a man on the street, in a hospital gown, with nothing but his undies on in the back.  I may or may not have snapped a picture with my cell phone.  There are so many stories right outside this hospital.  I have heard that Houston is the most diverse city in America.  I believe it and I think it is most true on the streets outside of this building.  Maggie's doctors alone represent at least 5 different countries.

*Many of you have asked about my other 3.  Here is a story to let you know how Sam and Ruthie are doing.  Yesterday Sam asked what the possible scenarios were for Maggie.  I explained that she could fully recover, come home a little different, or maybe not come home at all.  He sat and thought for a minute then said, "Wouldn't it be awesome if when she came home she could fly?"  Then Ruthie chimed in,  "That would be so awesome."   The conversation between them continued for several minutes about how cool it would be if they had a flying sister.

That is where we are.  To stick to the marathon analogy from earlier posts, I would say yesterday felt like we interrupted our stride  to stop and tie our shoes.  Today we were trying to just get going again.

Thanks for continuing to pray.

Wednesday, July 16, 2014

Moving Along

I figured moving along was a good title regardless of which journey analogy (roller coaster, marathon, mountain drive) landed on me before the end of this post. :)

I would say it was mostly a marathon kind of day.  She started the day moving her left side a little more and even moving her left hand for the first time since the initial event.  PT came and worked with her and her sitting balance was improved.  I was even able to crawl into bed with her today and read her a few books which was therapeutic for both of us.


She was still pretty sad today but not quite as weepy.  There are a few things she gives the nurses trouble with that we figured out she will let me do.  I have to say that sign of trust warms my heart because I fear that she is going to blame me for this experience.  Oh and of course I have popsicles and Nutella on my side so I am sure that helps too. 

Her ICU doctor sent me to McDonalds today to get her some french fries to raise her sodium.  I thought that was worth taking a picture of for all of my healthy friends out there. :)  I might have picked up an ice cream sunday for her too.  Her diet today is starting to sound like a trip to the Houston Rodeo.  There were no fried Oreos, I promise. 


Tonight we shifted into roller coaster gear for a little while.  Her fever started to climb and with it came a new set of seizures.   They stopped with Tylenol but the team increased her seizure meds anyway.   Our neurosurgeon, Dr. Whitehead, came to check on her personally.  I am convinced that man never sleeps because he really is there at all hours of the day.  If you know Mrs. Whitehead you can tell her we are sorry she never sees her husband but we really are thankful for his dedication to his patients.

Prayer Requests:  
*She has a follow up MRI tomorrow to see what the thalamic abscess is doing and if they need to tap the other lesion.  Pray it looks great and surgery is not necessary.

*They are also going to do an echo through her esophagus.  Cardiology is convinced there is nothing there but Infectious Disease feels like they need to address a possible endocarditis and seeing it will help them make sure their treatment is effective.  Pray they can see anything that is there.

*They are inserting a pic line while she is under for her 6 weeks of IV meds.  Pray against any side effects with this.  Our biggest concern is that they can cause clotting but she has to have it.

*Pray she handles the sedation well tomorrow and returns to us with new gains.  I feel like we lose a day or 2 with each sedation and I would like for that not to happen this time.

*Pray Trent and I are both responsive to what God wants to teach us through this.  I am convinced you don't walk away from an experience like this unchanged and I want that change to be one that makes me more like Christ instead of angry, fearful, or insecure.

Hoping tomorrow is a driving through the mountains kind of day where we see God make paths were there seemed to be no way.



Tuesday, July 15, 2014

A Diagnosis and Prayer Requests

The Facts:  Maggie's cultures from the abscess in her brain revealed strep bacteria.  The theory is that she contracted strep several weeks ago and that it set up in her heart somewhere and threw a clot or just migrated to her brain.  The course of treatment from here is to put in a pic line for 6 weeks of IV antibiotics.  She will have an MRI every Wednesday and procedures on Thursdays if needed to drain the abscesses on her brain.

The Implications: We are going to be here for awhile.  This also suggests that she does not have a clotting or bleeding disorder.  Now her heart condition does make her more likely to clot but she does not have an otherwise genetic clotting disorder.

The Prayer Requests:
*To be able to completely wipe out this infection without further brain surgery. There is an increased risk for brain damage and further infection with each surgery so we would like to avoid this.

*For complete return to her prior functional level.

*For complete emotional healing.

*For Trent and I to hit a care rhythm that allows us to sleep, work if necessary, and interact with our other 3 while taking care of Maggie.

*For the finances in all of this to work out.  This may be more about me releasing my need for control and security than any dollar amount.  I have financial security issues and I have a feeling that God may break me of those through this experience.  Pray that I can give those concerns to Him and then focus on what is eternal.

*For my other kids to feel secure and know they are loved.  They are starting to struggle and there is just not enough of me to go around right now.  I also want them to still enjoy their summer.


On Another Note:  We have been blessed with some new relationships since being here.  There are several team members that I really like and one in particular is from Beijing.  She moved here at 15 and has taken a real interest in Maggie.  Yesterday she came in and just hung out for a while and talked to Maggie in Mandarin.  Also, the vascular access team member today was the husband of a photography client of mine.  It's a small world and there is encouragement and small blessings all around us.  Trent has been speaking with the cleaning lady for the floor.  She is hispanic and he talks to her in Spanish.  She said she is praying for Maggie.

The staff here is amazing and we are getting excellent care.  You could see them trying to suppress the excitement in their eyes that they have a diagnosis while communicating the gravity of it to me.  I get it.  They are scientists and they don't like to lose.  Finding an explanation is a win for them.  Now they shift their need for victory to her recovery and I am determined to help them get a win there too.

Thanks for being on our team, for riding in our roller coaster, for providing drink stops in our marathon, and for your role in whatever other analogies I come up with over the course of this experience.  Thank you.  Thank you.  Thank you.




Monday, July 14, 2014

Turning Mountains Into Roads

When we were adopting Maggie, our prayer was that God would move the mountains that stood before us in order to bring her home, and He did.  Mountains for Maggie has remained our cry as we have faced this new experience with her.  Today a friend sent me a verse from Isaiah that I had not read before.  It says,

"I will make my mountains into level paths for them.  The highways will be raised above the valleys".

 I am claiming this verse for Maggie and praying that God would conquer the mountains before us.  He can move them or make a path through them, I am just ready to see them in my rearview mirror.

In the spirit of the path analogy, today has been mostly scenic driving.  Maggie was more alert and continued to show signs of left side return.  She is not showing good vision return and appears to have something going on with her right ear as well.  Please pray for return in all of these areas.

She was more sad today.  The fighter we have seen the last 2 weeks appeared a little more defeated today.  Please pray for peace and even joy again.

We have been blessed by several new relationships since being in the hospital that I want to tell you about in another post but you can just pray that God continues to develop those.

Okay last thing and then I am going to bed.  Pray for clarity on anything that might be growing on her cultures.  If it does indeed show itself, pray it is weak and easily defeated.

Here are a few pictures from our day.

This first one is after I discovered that Nutella makes a finger stick a little more bearable.  I kept explaining to her that if I share my Nutella with her, she has to know that she is loved.  As you can see, we still weren't okay with the stick but at least we weren't so mad that we set the pressure monitors off.



Throughout the day she would reach up and feel her drain tube coming out of her head.


When I would tell her not to pull it, she would show me her hand as to declare her innocence.


Sunday, July 13, 2014

July 13 Goes Down in History Again



July 13th has been a great day in our family for 5 years now.  It is the day our Ruthie Mei was placed in our arms for the very first time.  We celebrate this day every year with a family trip and were supposed to be in San Antonio this year.

We didn't get to take that trip but we were given another reason to celebrate this day.  Maggie had her brain surgery and is recovering remarkably well.  I believe this day is going to mark the day she really begins to heal.  I am claiming that as her story.

We have several things to be thankful for today:
* Maggie has not had any more seizures since the surgery.  They warned us that she would likely have some today from the irritation but she has not.

* She is working hard to pull the tube out of her head.  This may seem like a strange praise but her determination and ingenuity are signs of good mental function to me.

* We were given a private ICU room and now have a quiet place for her to recover.

* She continues to show spontaneous movement of her left side.

* They have allowed us to treat her with a high sodium diet today instead of the nasty oral sodium they were giving her that made her sick.  Vomiting and brain healing are not good combinations.  I am thankful we were able to avoid that today.

* My incredible in-laws stepped in and celebrated Ruthie today by taking her to Gattiland and dressing everyone in her favorite color.  I am so grateful for them and their willingness to not let this day go unrecognized.  We will celebrate as a family later.

* I have a fantastic husband who I could not do this crazy life without.


Prayer Requests remain the same- For complete healing and rest.  Please also pray for emotional healing for all of us.  Maggie is very sad and the rest of us are pretty traumatized.  A preventable diagnosis would be nice too. :)



The Last 24 Hours


It appears the sleepiness of Friday was a hint of what was coming on Saturday.   Maggie woke up Saturday morning with what appeared to be tremors in her right arm and leg.  The neurology team initially dismissed them as part of her recovery but we weren't as confident in that explanation as they were.  She slept for several hours Saturday morning and then woke up with tremors that were more intense than the earlier ones.  She slept again and awoke with full blown seizures. Eventually the team decided we needed a CT scan.  They found that the bleed on her thalamus had developed into a fluid filled cyst that was growing and closing off the flow of cerebral spinal fluid.  This was causing her to have hydrocephalus and thus the seizures.

At midnight they performed surgery to drain the cyst in the middle of her brain and provide a shunt for the CSF.  Sending your heart baby into brain surgery is almost as scary as holding her while she is having a stroke.  We said our goodbyes again and begged her to not give up.  This kid is a fighter and for that I am so grateful.  She did very well and had no complications.


They performed a repeat CT scan this morning and the fluid is now flowing freely.   Maggie's yamaka head dressing lasted about four hours before she reached up and pulled it off.  That's my little fighter. She also pulled her airway out while in recovery. 


We are back in the ICU and in a room with a very loud kid with even louder family members.   Why you put a kid who just came out of brain surgery in a shared room is beyond me.  As you can see, my filter is shot.  I am raw from lack of sleep and extreme emotion.

I am child of attorneys and I was in debate in high school.  My husband has said that he can't win an argument with me because I hold to my side of the argument to the death (probably not a good thing, I know).  I come by it naturally.  I say this because that is what my faith feels like right now.  I feel like I am grabbing onto what I know to be true when the circumstances around me are pushing hard to try and make me fold.  It's not pretty, but it is my only option.  I have to hold onto Jesus because without Him, all is lost.


So from here we need full healing and rest. That would pretty much cover it all. 

Friday, July 11, 2014

Holding Steady



Today has been mostly about trying to hold steady.   Her sodium levels were declining slowly and this got the night staff worked up on Thursday night.  There was talk of moving her back to the PICU and inserting a central line to give her high doses of sodium.  I was not in favor of this at all because the central line has a risk of forming a clot and this had been out of the question up until this night doctor saw her.  Luckily the day staff came back on and agreed with me.  We have been working on her sodium conservatively today and she seems to be holding steady.

We have had another interesting occurrence over the last 24 hours as well.  She has been having intermittent episodes of pre-ventricular contractions (PVCs).  They have her on a recorded monitor right now with someone watching her all night.  This could be related to her sodium/potassium balance and all they are trying to do to right those.  You can pray though that her heart hangs in there as we get things straightened out.

She was sleepy most of the day and didn't show real life until this evening.  I think we are going to have days like this and I just need to get used to it.

The in-patient rehab lady came to visit me today and showed me around the unit.  Maggie's doctors have estimated that she will be in rehab for 4 weeks after leaving the floor.  My feelings when they were showing me around were very similar to my feelings when I was getting a tour of the Cardiac ICU right after her stroke.  It is a nice space but I have no desire to make it mine.   Four weeks is a long time and that was not my plan for my kids' summer.  Yes I am having a pity party.  It happens about this time each night and I will wake up with new energy in the morning.  His mercies indeed are new every morning and I am counting on it.

Please keep praying for healing and a preventable diagnosis if God so chooses to grant us that information.

I love her so much.  I was telling Trent tonight how I feel like there isn't enough of me to meet everyone's needs right now and how hard this is.  His response was perfect.  Looking at Maggie he said, "but look at what we have.  She is so worth it."   Yes she is.




Thursday, July 10, 2014

Recovering (Both of us)

It is a terrifying thing to have your child have a stroke in your arms.  I am not sure if I will ever quit re-playing it in my head.  At night I have dreams that I am falling or that someone is attacking me.  Every time she so much as twitches or looks sleepy I panic that some is happening again.  It is going to take me a long time to get over this one.

So I am in my hotel room resting for a minute because I have the night shift tonight.  Trent and I have a deal where we turn off our phones when we go back to the room with the understanding that the other one will call the room phone if something goes wrong.  Well I was deep asleep and my room phone rang. I jumped up and ran across to answer it and it was stupid guest relations just making sure my stay was going okay.  REALLY?!?  It was going great until she about gave me a heart attack!  Now as I sit to update everyone, my legs are still shaking and my heart is about to jump out of my chest.  Thanks lady.


Okay so onto the update because I am not sure if I will get a chance tonight.  Maggie has done very well today.  She is even more alert than yesterday.  There is not a ton of return at her extremities or eyes but she is acknowledging the existence of her right hemisphere by turning her head to see things there more.  She is also talking to herself and just taking in her surroundings more.


(She is trying to give the PT her IV here.  She can't figure out why she can hold it but not give it away)

Apparently she smiled for the PT but as soon as I got there with my phone, she stopped.  I did catch her grinning at her Nana though and even mimicking like she used to.  We are starting to see more personality come back today.  It is not her in all of her over the top splendor but she is coming back to us slowly.


The plan for the next few days is to leave her alone and let her heal.  PT and OT will still come but the floor physician has told all of the specialists they have to wait until her next sedation day (next week) to do any tests they want.  With at least 9 different teams following her, there are a lot of theories and requests and it doesn't allow her time to rest.   

Last night while I was visiting my big kids, the geneticist had a hand x-ray done because she was curious what the bones in her hands looked like in light of her crooked thumbs.  I would have so denied that if I had been there.   Seeing her hand bones is not critical to her brain healing and is just extra radiation (after 3 CTs and a swallow study) and extra trauma.  I realize my daughter's condition is fascinating but we are hear to be treated, not studied.  We are putting an end to that.   

I like this new floor physician.  He has a strong personality and looks just like the character Sylar from the old NBC show, Heroes.  Luckily he is a lot more compassionate than that.  If you have seen the show will understand why my husband made a joke about taking him down if he lifts his pinky to my daughter. :)

Prayer requests are the same- complete healing and no new clots.  

We are thankful for you friends. 


Day of Encouragement

I believe July 9th will forever be known in our family as the day of encouragement.  Maggie woke up this morning with her facial and extremity swelling down and a light in her eyes that we had not seen in over a week.  For several days, her eyes have had this film over them that concerned me but today it was gone.  We were so much more encouraged yesterday for her making good progress and I believe the doctors were too.

I am sorry I didn't post this last night but the internet was acting up again and I was falling asleep waiting on it so I just shut it down.


So here are the high points from yesterday:
* Maggie just overall looks like she feels better.
* We went 24 hrs without pain meds.
* She moved her left arm and left leg a little again while waking up from a nap.
* When she was laying on her left side, she shifter her eyes to the right in  her right visual field to look at me.  This is the first time she has done this.  We could not get her to do it sitting upright though. 
* I was able to have lunch across the street with some friends.  
* I went home for a few hours last night to do some laundry and tuck my other 3 in bed.  
* We moved to the step down unit to PCU instead of ICU.



Our continued prayer requests:
* For complete healing to Maggies left side and vision
* For no more clots or bleeds
* For rest for Trent and me.  There is a couch in her new room so whoever stays with her at night can sleep now.  That will help a lot.  We are hoping to trade off entire nights instead of breaking the night in half so every other night you get a full nights sleep.
* For my other 3 to know that they are loved and be able to get through this okay.


She is obviously not completely back to herself emotionally in that we have no real smiles or giggles.  She doesn't request anything but comfort.  However, I think we are getting there and I am hopeful for what the today holds.




Tuesday, July 8, 2014

The Birthday Roller Coaster

There is a mural outside of the PICU that depicts a child on a roller coaster with her physician.  It is fitting for that location.   On rounds this morning, the neurologists had some tough news regarding the severity of Maggie's brain injury and the possibility of another clot.  It was really scary and left me a mess.  It was just a few hours later though that she was rocking her swallow study and being cleared to eat whatever she wanted and I found myself rejoicing again.    It feels like these emotional swings are becoming our norm. 
I am going to try and summarize our day pretty quickly because I am having some internet challenges tonight. 
The Good: 
*Maggie appears to be more alert and is having longer wake times.  
*She is eating well and loved her cupcake this afternoon even if she wasn't a fan of being sung to. :)  
*My other kiddos have returned home safe and sound and were able to celebrate their sister. 
*Her digestive tract is moving again and I seriously think her swelling went down some in the hours after that.  I know she has to be feeling better. 
*They removed an arterial line that was causing her some discomfort. 
*She was able to tolerate both PT and OT today.  
*WE CELEBRATED HER BIRTHDAY!!

The Challenging (Prayer Requests): 
*There is possibly a spot on her lung that could be clot related. 
*She is using her left arm and leg less.
*She cannot track passed midline to see her right visual field.
*We still have no definitive cause on why she is clotting or why she bled.  This keeps us from being able to prevent this from happening again. 

We continue to be blessed by the outpouring of love from our community.  Maggie had a special visit today from members of the team who traveled with me when I first met her.   She holds a special place in their hearts and they traveled 10 hours round trip in a single day to spend her birthday with her.  The highlight of my day was getting to sit around a table and just hang out with them for a few minutes. 

Here are a some pictures from Maggie's birthday celebration.  Thank you to everyone who helped make it special and to all of our friends who continue to hold us up.