Reflection.

Isaiah 43:1-3 “Do not fear, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord you God, the Holy One of Israel, your Savior.”

This verse pretty much sums up the promises we have relied on for the last 6 months. I feel like it’s important to be reminded that the Lord NEVER promised us that our lives will be easy and free of trouble. However, He does promise that we won’t ever be left “alone”. Our faith WILL be tested. The Bible tells us to “rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope!” Romans 5:3-5

So much of what we have gone through has been a relentless testing of our faith. It’s hard to really even grasp what faith truly looks like until it’s put on trial. For me, it has looked like saying over and over “Lord, I don’t have this, but I trust that YOU are 10 steps ahead of me and will provide a way through this firestorm that I can’t even make sense of.”

This has been the hardest lesson for me to learn. Having almost no choice but to TRULY surrender my life and the lives of my children, placing them back into the Lord’s capable hands and stand to the side and release control. To truly trust at my core that HE has got this and doesn’t need my help, rather just needs me to put one foot in front of the other and just. keep. walking. down the path He put me on.

I have said many times “Lord, I DO NOT have the strength, I need you to give me whatever its going to take to get me through this season.” and He has. HE has made us Brave. HE has given us supernatural peace. HE has allowed us to have the perspective we have on life. HE has given us comfort when we don’t understand why things happen the way they do. HE has orchestrated schedules and conversations and and doctors and people to happen right on time. The Lord has NEVER left us alone in this. He has ALWAYS been way ahead of us and provided for our EVERY need. I would be foolish not to be shouting about His goodness from the rooftops.
Someone told me once “God rarely shows up early, but He is NEVER late. He is always right on time.” So true.

A friend shared this song with me about 6 weeks ago and its been our anthem. I pray that you will seek the Lord in whatever you are dealing with and let HIM show you what it truly means to Be Brave.

www.bravecampaign.com

Update: First week home.

We have been home now almost a week. This past week has been a complete blur for me. Most days I couldn't have even told you what day it was, what the weather was like outside, where my children were or what time it was. 

We arrived back in Texas Monday evening. It was about all I could do to make the trip home from the airport. Henley did great. She had no problems on the plane with the pressure and she has been off pain meds completely for almost two weeks. She is seriously making brain surgery look like it was a piece of cake after that first week. They always say children bounce back like you wouldn't believe, but seriously, It's pretty remarkable. The minute we got in the car at the airport I had to take all of my pain meds just to be able to endure sitting one more hour in the car ride home from Love Field. 

We got to the house decked out in our winter gear and it was about 90 degrees outside. In addition to the strangeness of the drastic weather change, walking into our house felt strange. We've never been away from our home for such a long period of time. It was perfectly clean and smelled like home but it took some mental re-adjusting to the space. We dropped our things and Henley wanted to go straight to her room. Her room had been completely re-decorated while we were gone by some of my very sweet friends. The whole room is just precious and I can't wait to share pictures soon. Henley is in love with her new space! I held it together long enough to be super excited with her about her room and then quickly headed downstairs, went straight to my room, put my pjs on and collapsed. I was OUT...for days. I mean literally, I did not wake up again until Wednesday. 

I felt like falling into my bed was like collapsing across the finish line of the longest marathon I'd ever run. I just laid there staring up at the sky....for an entire week. My mom spent the days here with us to help with everything. Laundry, meals, cleaning the kitchen, taking care of kids and me. You name it. She is a rockstar. Adam went to bed Monday night with a fever and spent most of Tuesday in bed nursing a cold. We were both down for the count. Our physical bodies and emotions just completely and utterly spent. 

Wednesday I woke up in a LOT of pain. Adam had been talking to Dr. McClure in New York almost daily. When Dr. McClure called to check in on me on Wednesday, he suggested we go back to the ER to get some more imaging to make sure there was no internal bleeding or new findings. Not wanting to go to the hospital and truly wanting to be able to get the pain under control myself {stubborn}, I spent the day trying everything I knew to get on top of the pain. I finally ended up throwing in the towel that afternoon around 3:00pm and told Adam to just take me to the Emergency Room. I could not understand why I was still in SO much pain and it had been an entire week. I was taking a LOT of very strong pain meds and I still felt like dying might be easier. I took my last two Percocet pain pills and Adam drove me downtown to the hospital. We walked in the door and the minute we told them the story of the past week, they went into high gear. I have never seen an Emergency department move so efficiently {I knew it was possible!}. From the time I walked in the door of the hospital until I was being wheeled into the CT scanner for a CT angiogram was about 15 minutes. It was truly impressive. They ruled out internal bleeding which was our main concern. They checked my kidney function, urinalysis and bloodwork. All came back within normal range {Praise the Lord!}. With those concerns at ease, then came down to pure pain management. The nurses came in and gave me a 25mcg of fentanyl. 15 minutes later I had ZERO relief. They gave me toradol next since it had worked last week...15 minutes later NO RELIEF. They finally came back in 15 minutes after that and gave me 100 mcg of fentanyl and that finally kicked the pain. The doctors concluded that the pain is because of what is called "Infarction" which is tissue death due to inadequate blood supply to the affected area. Most people have heard of Myocardial infarction which is the partial death of heart tissue aka: a heart attack. So basically, it feels like my kidney is having a heart attack. ALL. THE. TIME. Imagine every part of your abdomen from your belly button on your right side all the way around to your spine cramps up so intensely that you feel like you might explode from the pressure. That's about how I have felt for the past 11 days. Well, the good news is... It's just part of my kidney dying. Everything else looks Fantastic! {insert sarcasm here}

If you know me well, you know how much I can't stand medications. I lean towards all things natural and so having to rely on these medications so heavily and be subject to their unruly side effects has been a very hard pill to swallow {see what I did there?}. However, I was thankful to have them and I was thankful they were working. We were able to go home much more relieved Wednesday night and I was put on a very strict schedule of taking my pain meds in exactly 4-6 hour increments {alarm included}. I spent the next two days pretty out of it as you might imagine. Throwing up because of the meds, but needing them to keep the pain under control. Saturday morning, 11 days post-op was the first time the pain wasn't the reason I woke up. I decided to take advil instead and see if that work keep the pain at bay....it did. I went another 6 hours and took another round of advil and so on and so forth. I made it through an entire day without the hard core meds.

Sunday, I finally felt like the fog was lifting. Like I could see clearly for the first time in a week. Slowly but surely I was able to get up and take a shower and get ready to go to church. I was so ready to get out of the house. I expended way too much energy getting ready, but I made it. After church I came home and went right back to bed for a couple hours. I am really hopeful that the major pain has finally subsided and I can move forward without the drugs. Tomorrow I see a specialist at UT Southwestern who is a personal referral from the Doctors in New York. This doctor will be the one following my case from Texas. 

First of all, thank you for praying. We know that we have been on the front lines of a serious spiritual battle this year and we KNOW the power of prayer. Thank you for linking arms with us and praying fervently for our family. We have felt the prayers and there is no other explanation for the way we have been able to walk through this other than the fact the The Lord has provided for our every need. "but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31 

We are so thankful to everyone who has signed up to bring meals, sent cards and gifts, who have donated to the go fund me site, and have bought t-shirts and necklaces at www.bravecampaign.com you guys are seriously amazing!! You have orchestrated and declared Brave Days at school and on the baseball field. You have overwhelmed us with love and support and shown thousands of people what it looks like to be a part of the body of Christ. You have encouraged our family and carried us through in ways you may never know. Our plan is to take what The Lord has done through our story and turn Brave Campaign into a non-profit and keep paying it forward for other families like ours who need help traveling for treatments and who are facing times where they have to step up and Be Brave. We hope that you will continue to help us by shopping for a purpose at the site (we still have lots of t-shirts, necklaces and bracelets!), knowing that the money from your gifts and purchases will be stewarded well. 

Peace out PICU!

We are so excited to have been released from the PICU. Henley is actually OUT OF THE HOSPITAL. We are kinda shocked, but she is doing remarkably well and although she is still on some pretty major drugs, we are able to manage the pain without IV meds. We have moved her back to our little hotel across the street from the hospital and are planning to have a peaceful and uneventful recovery for her here over the next week. Our main concern is keeping germs off of the back of her head so we are doing a lot to keep hands clean and use the topical medications we have on her incision site. We also have to work with her on moving her neck and head because her neck is very stiff after the surgery. We are encouraging her to look SLOWLY from side to side frequently. Henley has a follow up appointment with Dr. Greenfield at the end of this next week and then we should be released to come home over the weekend. 

New York is expecting a Blizzard on Tuesday & Wednesday so we are excited to see this place covered in snow! 

We have changed out plans a little bit and decided to stay put in this one hotel until we come home. So our address for the rest of our time here is: The Helmsley Medical Tower 1320 York Ave # L, New York, NY 10021

Update on Henley from Adam

The situation in the ICU is such that there is really only room for one parent to sleep in the "room", which is really just an area sectioned off by a curtain, so I went back to our hotel to sleep for the night. As expected, neither Henley nor Leslie got very restful sleep last night. Today, Henley has improved some. She was able to eat a blueberry muffin and drink a little water without any issues, which is a big step in her goal of getting to eat a cupcake. The physical therapist came in and we were able to get her out of bed and walk for a little bit, which went really well. She was then able to sit up in a chair for about hour before climbing back in bed. She also got a visit from her little buddy, Darby, which livened her up immediately. 

As you can imagine, she got pretty worn out from all of the activity and the pain started getting the best of her. We got her some meds and she is resting comfortably now. Continue to pray that she is able to keep food and water down, which is key for her strength, and that the pain is kept at a tolerable level. 

Again, thank you guys for all of the prayers and support. We are truly humbled.

In the PICU

In the PICU. Henley is stable and in and out because of all the drugs. Even with Dilauded her pain is still at a "5". They did mess with her neck muscles quite a bit so that is to be expected. And for those of you who have been holding out hope, they did have to shave the back of her head this time

I am certain I have never seen so many teams of Doctors and Nurses all rounding on one patient. It's rather impressive how many people are constantly coming by to check on her. There is a critical care team, the neurosurgery team, the pain management team and possibly one other group. Each group of people seems to have about 4 people.  

Letting Go.

We were able to suit up and go into the O.R. with Henley. They gave her versed i.e. "Giggle juice" to help to make her relaxed before going back. Apparently that is not standard procedure around here, but we requested it because her emotional state is of HUGE importance to us. After all, we are the ones who will deal with the emotional aftermath in all of this and they will get to walk away. 

Going under anesthesia is terrifying for Henley. It is for most people to be honest. However, there is one memory that neither one of us can seem to shake and that is the memory she had when she came out of surgery the first time when she was two. Immediately upon waking Adam and I were right there with her. I leaned down to hug and kiss her and the first words out of her mouth were "I'm so sorry mommy." As if she had done something to deserve all of this. To deserve this pain. I have never been the same. 

We have spent years talking through this, trying to make it okay. It's not. I don't know that it ever can be okay. Those memories run deep and she remembers them even 5 years later. She remembers waking up crying and she remembers being sad. 

I can't even talk about it all without crying. 

Yes, I'm sure I need therapy....we probably all do. 

So, we were able to go into the O.R. and meet a few of the people who are with Henley this morning. We told them that there were thousands of people praying over them today. Henley was really silly thanks to the drugs. They began putting all of the monitors on her, stickers all over her chest etc. Henley started making comments about payback and putting stickers on all these guys when she was done! When it came to the mask and the anesthesia it was again....traumatic. You can see it in her eyes. You can see trauma happening. There are no words for this. I prayed over her and and begged the Lord one last time to stand in our place and keep her safe. We kissed her and were escorted out of the O.R. I lost it when I walked out of the room. The child life specialist was there with us and Dr. Greenfield followed us out of the O.R. He reassured us that she was going to be okay. 

There is nothing that makes this easier. Walking away and handing over the life of your child is excruciating. My only hope is knowing the I left the Lord in there with her and HE is watching over his baby.

Quick Details

We have arrived in New York and are settled in our little place for this first week. We will be staying at The Helmsley Medical Tower this first week while Henley is in the ICU. This location is literally across the street from the Specialty Surgery building and so it will make it very easy to take turns getting showers and naps etc since there is little of that happening in the ICU. After Henley gets out of the ICU (approx 5 days), we will move to a cheaper hotel down the road a bit to save money and to be with those in our family who are traveling up here to be with us. If you have anything you would like to send to us over the next couple weeks, please send it to the hotel. Address is: Leslie Thomas C/O The Helmsley Medical Tower 1320 York Ave # L, New York, NY 10021 We will be in this location until Sunday March 12th. Then we will move to The Bentley Hotel 500 E 62nd St, New York, NY 10065 for the next week. Food is VERY expensive here and we are using our Amazon Prime to get some groceries and things we need delivered to our hotel (food, bottled waters and several other items we didn't even know we needed until arriving) There is also an app people use here called Seamless where you can order meals from local restaurants and they deliver directly to the lobby of the hospital or hotel. We are hoping to utilize that a bunch too. 

We have Henley's Pre-Op appointment tomorrow at 1:00pm and will have a lot more details after that appointment and I plan to write a post tomorrow explaining more in detail about the surgery itself and specific prayer requests. Surgery is Wednesday morning and since she is the youngest, that means she gets to go first. I will know a "time" tomorrow. Thank you all for praying. We know we are being carried through all of this because the Lord is answering your prayers and giving us exactly what we need in each moment. Thank you. 

Prayers Needed.

Preparing for Henley's surgery in March, the neurosurgeon in New York felt it would be helpful to have a "flex and extension MRI" study done. For several reasons this is important information to have. Basically, they want to see what happens to Henley's brain when she tilts her head down and back. To do this MRI they generally have to hold a very uncomfortable position for about 30 min each way. Because it's difficult enough already to get children to be perfectly still in an MRI, this procedure at Henley's age requires her to be sedated. Anesthesia is the absolute scariest thing in Henley's world. But alas, this is part of her world and so sometimes we have to do things that really stink. 

Today I got an unusual phone call from Cooks Radiology about 11:00. The man I talked with said that their neuro-radiologist had just reviewed Henley's scans from September and felt this procedure was going to be too dangerous to do under anesthesia due to the severity of her Chiari. Basically, they are afraid it might completely cut off the oxygen and or fluid to her brain and she wouldn't be able to tell anyone. They went back and forth with our surgeon in New York, but the bottom line is that it's up to the Neuro-Radiologist to make that call. SO, with that said we are going to try to somehow get these images WITHOUT anesthesia and we will have to just get what we can with Henley's cooperation. She is still pretty young to even try doing an MRI without anesthesia so we need some major prayers over her tonight and tomorrow. Please pray for her to have peace and to be able to get this done without a panic attack like we saw in Boston. If she can make it through this procedure, we likely won't have to do sedation ever again for MRIs which would be HUGE for us! 

The guy I spoke with at Cooks was super concerned about Henley and wanted to do everything he could to help make her comfortable with a super uncomfortable procedure. He asked if I thought it would be helpful to let Henley come down to the hospital tonight for a "trial run" and to have a "field trip" of sorts. 

He agreed that we could all eat dinner with our respective families and then meet up at Cooks tonight at 7:30 for a field trip. We are taking all the kids in hopes that Henley can show her siblings around her hospital. Sometimes when we can put her in a leadership role it helps to lessen the fear factor she would normally have. 

So here we go. Wish us luck and say a prayer. Hoping tonight goes well.