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.
If you have visited here before, you can probably see that I have changed the name of the blog again. I started blogging at 4URuthie to tell the story of our journey to adopt our 1st daughter. I changed it to Mountains for Maggie when we were praying for God to move mountains on behalf of our 2nd daughter. Well now it is no longer just Ruthie’s or Maggie’s stories. It is now our family's story, and the stories of those we share life with, as we Conquer Mountains together. Both ConqueringMountains.net and 4URuthie.blogspot will lead here.
Thursday, July 31, 2014
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.
Tuesday, July 29, 2014
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.
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
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.
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
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
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.
As always, you guys are amazing and continue to blow us away with your encouragement. Thanks for loving my girl.
Tuesday, July 22, 2014
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.
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
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
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
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
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.
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.
*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
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
"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 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. :)
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.
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.
Friday, July 11, 2014
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
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.
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.
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
Last Monday morning, I was sitting in a Dallas hotel room with Ruthie (my 10-year old) watching TV. She chose an OLD Christmas cartoon tha...
We are in the cardiac ICU with Maggie. We were admitted on Monday after a 2nd trip to the ER with fever, vomiting, and left side joint pain...
(this was taken by the mom who has a baby in the bed next to us. It pretty much sums up our day) It's been a night. I think I jin...