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.