3 Month Post Op Results

When we left New York in March we left with 3-month post-op appointments scheduled for the end of June. The plan was for Henley to have her imaging in Texas and then for us to fly up there and meet with Dr. Greenfield to go over everything. At the same time, I would also have my 3-month post-op MRI scans and meet with my doctor as well. We had every intention of simply high-fiving both doctors and saying "Peace out" to New York when we left. One of my best friends and I talked about making the June trip a "Girls Trip" and leaving Adam & Zane at home. I honestly thought it would be a great way to end this long saga and finish it out with a super fun trip where we could hopefully replace some hard memories with great ones. 

We already had these plans in motion. Plane tickets and hotel room booked when things started going wrong with me, so it wasn't mid-June that we realized these plans were all about to change. Regardless, we went ahead with the plans to make this a surprise girl trip and I felt good at least knowing that if something went "wrong" with me, I would be in the best place to get the care I needed. 

We saw Dr. Greenfield on the last day of our trip and these were the pictures he handed me when he came in the room. We had already seen the images because we have the capability to "read" these at home. So before we went, we knew how awesome everything looked. We have also seen some really great improvements in Henley since surgery. It's hard to explain but her brain seems to actually be functioning better. As in, before when you asked her a question, she might respond with one line or a yes or no. She lacked in detail and that was even reflected in her writing. We had her write in a journal before she went in for surgery and then every day after the surgery. You can clearly see how much her writing has changed. Her handwriting while messier, is FULL of details and thoughts. We see the same thing in her speech. It's like now her brain is processing so fast that she has so many detail and things she wants to say. So we sit and listen....and listen....and listen to ALLLLLLLL of the many details in her stories. We are so thankful for that. In addition to that, she has maybe had ONE headache since we have been home. O.N.E.!!! That is a huge praise. She has also been so much more stable on her feet. Even last week I caught her standing on a paddle board in the water and she was actually stable. I could hardly believe it. She hasn't been tripping and falling like she was and her speech seems to even be a bit clearer, although she will still need speech to fix some problems that have just become a habit at this point.

Also, a side note in case you are wondering. When we met with Dr. G we talked about so many different things but one, in particular, was the story of what happened to Henley during her surgery. He sat back in his chair and said "I want to hear all about it." I told him about her recollection and how she told us specifics about the surgery and how she said that God was there with her. After I was done with the story he said "I have never heard a story like that, that is pretty incredible." 

All in all, we are very happy with the results of this surgery and feel like if we see this much progress at 3 months, we can't wait to see what 1 year post op brings. I am beyond thankful that I followed my momma gut instinct here and we went to New York to see Dr. Greenfield. 

New York Girls Trip

There may be only one way to sum up this trip. It was a blast. It was exhausting. 

Another surgery on the horizon.

Well, I really thought this year of complete chaos was over at the end of March. Guess we aren’t quite there yet. {insert exhaustive sigh and eye rolling here} I have put off writing all of this down because part of me still can’t believe it. 

After we got home in March I ended up back in the emergency room during the first week home. I was in the most excruciating pain I have ever been in in my life. To put it in perspective for all of you mothers out there, I told Adam I would have rather given birth to all three of our children in the same day with no drugs over this pain. I realize that sounds dramatic, but let me explain. The surgery I had in New York was to cut off the blood supply to the growing aneurysm inside the middle of my kidney so that it did not rupture. You don’t want an aneurysm to rupture because, well, it can kill you. So when you cut off the blood supply to an organ in your body, you have what is called infarcs. This is what happens to someone's heart who is having a heart attack. Blood flow is cut off to an area of your heart and your organ starts freaking out and that is where you get the intense chest pain. So basically my kidney was having a “kidney attack” and the only thing you can do about the pain is to tough it out until that area of the kidney eventually gives up and dies off. When someone has a heart attack, the pain sends them to the ER and they have emergency surgery to get a stint put in or something to open the blood flow back up, but in the case of my kidney the goal was the opposite. It’s messed up right?!? I know. So basically, it took about 2 weeks for that part of my kidney to die off and I pretty much stayed on crazy pain meds every 3 hours for two weeks and slept through about two weeks of my life. 

After a CT scan in the ER and a new prescription for more pain meds, I was released to go home with a “Everything looks like it is supposed to, you are just going to have to live through this until it's over.”
I went on for about a month feeling like things were good and I was back to normal. I am not typically the type person to pay super close attention to my body and little warning signs, so it's likely that I didn’t realize at the time I was having high blood pressure. Mother’s Day weekend I went to a women’s conference with some friends of mine and on Saturday I didn’t feel well. I thought I was coming down with something and my best friend Lauren insisted that we find a minute clinic. We went in and the nurse told me that my blood pressure was about 160/88. Having no history of high blood pressure, I was surprised by this info. She seemed concerned and told me that I should follow up with my doctor on Monday and have it checked out. Sunday came and I felt horrible. All I wanted to do was lay in bed and since it was Mother’s Day I did. Monday morning I called first thing and got an appointment. I had checked my blood pressure and it was gradually getting higher. 9:00 am it was 140/104. An hour later 160/112. I knew I had an appointment at 2:30 and so I tried to just stay calm. I went on about my morning and then noticed I started feeling dizzy and my hands were tingling. I had a horrible headache and began to worry. Knowing that I come from a long line of stroke victims, I was not willing to take the chance and so I decided to drive myself to the urgent care near my house.

When I arrived, I was the only person in the entire waiting room. It was kind of like the twilight zone. I guess Monday mornings aren't super busy…or the Lord had totally paved the way for me to get immediate attention. I calmly checked in at the front desk and they ask me what brought me in today. I said “I took my blood pressure and it was kind of high.” I explained about my recent surgery and told them I just wanted to have everything checked out because I was concerned. I could tell when I said “Kidney Aneurysm” I got a strange look. The EMT escorted me back to a room and asked me to sit on the bed. Immediately about 3 other people walked into the room. They introduced themselves as the doctor and a few nurses. They took my blood pressure and we chatted about medical history while we were waiting on the reading. When it was finished the doctor's eyes widened. She calmly said, “okay we are going to start an IV and go ahead and give you some meds to bring that down. We are going to get orders put in for a CT scan. I asked what the reading was. 198/129. Within minutes we had already completed a CT scan and waited for results from the radiologist. By this time Adam had arrived. While waiting for the results, I emailed my surgeon in New York and told him what was going on and told him the doctors here were going to try to call him. The doctor walked in with this look on her face as if she had bad news. She sat down next to the bed and said “I am so sorry to tell you this, but it looks like you have another aneurysm in your kidney.” My mouth dropped open and I turned to Adam and said “You’ve got to be kidding me”, and we both kind of laughed. I think you would agree, it’s just comical at this point. Or unbelievable. I am not sure which. The doctor then explained that they had already called for transport. “Transport for what?” She looked at me like I might be crazy for asking that and said “We are having an ambulance take you to a bigger hospital. Where would you like to go?” We talked about the possibilities and decided on Baylor Grapevine. In my mind I knew this wasn’t going to get resolved in a hurry based off previous experience. About that time Dr. McClure called my cell phone. He had stepped out of a meeting he was in in Boston to see what was going on. We put him on speaker phone and talked with the doctors here before they transported me. 

I spent a night at the hospital being monitored and left there with blood pressure meds and instructions to follow up with all of my doctors. 

Over the next few days I spoke with Dr. McClure and he asked for more detailed images to be done and sent to New York. The next several weeks looked like frequent blood pressure readings, doctors visits, MRA and CTA studies to get a really good picture of what is happening inside my kidney. After we received the results of the tests we sent everything to New York to be looked at by Dr. M. He called one night and talked to Adam and me. We asked a ton of questions and at the end of our conversation we had decided that repeating the same procedure with a slightly different approach would be our best bet. I asked him if we should just cut our losses with this kidney and take it out to which he replied “I think it's a reasonable question, but I don’t think it’s wise to do that unless it becomes absolutely necessary.” He felt like giving this another shot was the best course of action and instead of trying to cut off the blood flow to the aneurysm this time he would just go in and fill the aneurysm cavity with titanium coils and glue and whatever else he could find laying around. Just kidding, but it seems super weird to have all that stuff inside of one of my organs anyways, so it might as well be as haphazard as it sounds at this point. After a 30 minute conversation on the phone we had a surgery date set and a new plan. July 12th. We had a lot of factors playing into the scheduling of it all and yes, I did ask if it was safe for me to wait until then to have the surgery knowing that this thing keeps growing. We are going to trust in the Lord’s timing here and pray that my body is safe until and through the surgery and we come out of this having no other problems in the future. 

Thank you for praying with us. We know the Lord's will will be done here, no matter what that looks like. 

Yes, I am still an Interior Designer

People sometimes ask me if I am still "designing". The answer is "Yes, on occasion." The truth is, while I spent many years doing Interior Design full time for a couple different design firms and then went out on my own, I just don't make the time anymore to work like I did. So while I still work for old clients and help friends out when I can and take on very small jobs, I am truly focused on other things right now that are more fulfilling personally. 

I make exceptions for certain people and this was one I couldn't pass up. One of my dear friends Amy Cabrero and her family have been stationed in California for the last several years. Amy was my little sis in club out at ACU and we still have a special friendship. She and Mike got their final assignment back at "Home" as in Texas. In fact, they were going to be moving about 15 minutes from us. They bought Amy's parents house and wanted to renovate it. They bought Amy's parent's house and wanted to renovate it. They have 4 small children and a dog and although Mike is super handy and could do most of the work on the house himself, it was going to be a huge undertaking. Doing a renovation like they were wanting with 4 kids in the house was going to be no bueno. So, Amy flew in one weekend right after Easter and we spent two days working through her house. We picked tiles and carpet, paint and cabinets etc. We met with subs and got estimates and then she got on a plane and headed home. I sent her very few pictures along the way and pretty much told them "See you in June!" They were super excited to come home to a fresh new design. I am so excited how it all turned out. 

Summer Spectacular - Gideon

Summer Spectacular is our church's Vacation Bible School on steroids. It's a gigantic ordeal and so much fun. The entire family comes to participate in this week at our church and it takes hundreds of volunteers to make this week happen. I am generally in the cast of the show. Basically, everyone goes to class in the evening and then the parents pick their kids up from class and everyone goes into the main auditorium to watch what they just learned come to life in a Broadway-like musical. It's hilarious because we take very current popular songs that generally everyone has heard on the radio, change the words to fit the story and in full blown costume, a cast of about 75 people put on this massive show. It's pretty....Spectacular. 

This year with all that we had going on, I missed the audition and so I was super lucky to be able to be in the cast based off of previous years. It was touch and go pretty much the entire 2 months of rehearsal after my surgery, but I did it and had a blast. While it is a sacrifice for the entire family for mom to be at rehearsal 3 nights a week, the kids LOVE seeing me up there the week of the show. Not only that, but they love that they get all of the insider secrets and get to memorize the music before anyone else sees it. It's something we all look forward to every year. Well, maybe not Adam. I am pretty sure spending 7 straight nights dragging kids back and forth to church is not his favorite, but he is taking one for the team. ;-) 

After each show we stay and sign autographs for all of the kids who came to the show. There are generally about 3,500-5,000 people that come and so as you can imagine we tend to goof off a bit once our night it completely over.

The Girls Baptisms.

What a beautiful and perfect day today was. Both Haven and Henley were baptized. We had to do a fair amount of planning for this because of several reasons. We had Grandparents that wanted to be in town for it and we were kind of waiting on Henley's head to heal a little bit more to reduce the risk of another infection. The church actually ended up draining the entire baptistry and deep cleaning it before the day just to make absolutely certain on their end that we wouldn't be contributing to any possible infections. We were so thankful for that. 

The sermon was about hearing from the Lord, which could not have been more applicable to Henley's story. About 2 minutes into the sermon I looked at Adam in awe. I could not believe how beautifully orchestrated the entire service was. In addition to the sermon being spot on, the worship blew my mind. You see, I have this playlist on my phone. It's called Prayer Time. It's a VERY SMALL collection of about 6 or 7 songs that speak so deeply to my heart and have helped me to get through these last 6 years. I am not even kidding when I say that 4 of the songs we sang in worship that day were songs off of my prayer time playlist. 

Here are photos and videos from that day. I am pretty sure there was not a dry eye in the whole building after Adam told the story of Henley's surgery before baptizing her. 

Holy Presence

Not long after we got home from New York we were having a conversation one night at bedtime with the kids. The conversation turned to baptism and the kids all responded differently. Henley immediately said, "Mommy, I want to get baptized." A little shocked because of her age and the fact that we had not really talked about it with her directly, I hesitated. We talked a little bit and she seemed pretty sure of herself, but the "she's so young" kept intruding my thoughts.  I knew that because of her recent surgery and the restriction of not being able to have her head submerged in water would be the end of the discussion. I told her "Well, you can't actually do that right now anyways because of your head. You are not allowed to get it wet until it heals." She said, "okay, when my head heals, can I get baptized?" I responded with "We will keep talking about it." 

When asking the other kids what they thought about baptism, Haven's response was the same as it has been the last year "I'm not ready yet." We have always told her that when she decides she is ready to let us know and that we would always be there for questions if she had them. For over a year she has spent time talking and learning about baptism at home, BSF and in Bible Class at church. Haven is a processor type so we knew it would be a while for her and have been more than willing to let her come to that decision all on her own. Zane, on the other hand, said: "Can I wear goggles when I get baptized and swim in the water afterward?" Uhm. No. Clearly, you are not ready. Bedtime commenced and we moved on. 

The topic has come up since then and Henley has remained sure about her conviction to want to get baptized, but again, the fact that her head has not healed has been a restriction. When we got word that Henley's sweet little friend Madeline would be baptized this past Sunday I knew it was going to come up again. Sure enough, we went to the baptism and in the car on the way home from church Henley said: "Mommy, I want to get baptized." We asked her "Why?" and her response was "I want to receive the Holy Spirit and I want to follow God." I don't really know how you argue with that. Haven then piped up and said, "I think I'm ready to get baptized too." We continued to talk about it the remainder of the day and have talked about it since. 

This afternoon after school I had all of the kids take a rest time because it was clear they all needed some downtime when they got home. I went up into Henley's room to talk to her and asked her if she wanted to talk more about baptism and asked her if she had any questions for me. She said "No" and so I asked her again if she really felt like she was ready to be baptized and asked her if she understood what it meant to be baptized. We talked more and it was pretty clear to me that in her mind it was a simple decision. You either choose to follow the Lord or choose to follow Satan. 

I talked with Adam last night about this and said to him that it does not really surprise me that Henley might see this as such a simple decision with all of the things that she has come through this year. I 1000% believe in the power of prayer and I have seen miracles first hand. We have had quite literally thousands of people praying over Henley. Praying for her peace and for the Lord's comfort to be upon her. I know that I personally have prayed specifically for God to reveal himself to her in mighty ways through all of this and I also prayed specifically for the Lord to be with her during the surgery and to let her know that she would not be alone. I prayed specifically for God to whisper in her ear and give her comfort and peace during her surgery. I, along with many of you begged the Lord to be the one performing her surgery in that operating room that day, and I believed the Lord when He told Adam and I both on separate occasions that she was going to be okay and that we just needed to trust Him with her. 

So today when I was up in her room we were talking about what it means to listen to God. I explained that the Lord often whispers and we have to really be listening to hear what He has to say to us. Out of my own curiosity, I asked her if she has ever heard God speak to her. She looked at me and very matter of factly said "Yes." I asked her to tell me more about that and she proceeded. She said, "He spoke to me during my surgery....both of them." I said did you hear him out loud?" She said, "No, I didn't hear him in my ears, but He talked to me in my head." I asked, "What did He say to you?" She said, "He told me to be brave." Barely able to breathe at this point and trying to hold in my emotion I asked her if that was all and she said "Yes."...... "He stayed with me after you left. He was there while I was sleeping. He was there the whole time." At this point, I could hardly stop the tears and was trying to keep it together. I didn't want her to feel like what she said made me upset or that I was sad in any way. It's nearly impossible to explain the depth of emotion I was feeling so I just tried to pull it together. Henley changed topics and went on as if it what she had just said wasn't anything other than fact. She asked if she could read a book in her quiet time and so I told her I was going to let her do that and that I would be downstairs. I quickly came downstairs and burst into tears of thankfulness. Thankfulness for so many answered prayers. 

When Adam got home from work I asked her to tell him what she had explained to me about that day. She did and I asked her a few more questions. This is where it got even more interesting. I asked Henley "So where was the Lord during your surgery?" She ran her right hand up and down about 2 inches from her side and said "He was right here. He was here the whole time." My next question was almost a trick question. I said, "Were you lying on your back or on your face when He was there with you?" Without skipping a beat she replied "My face." Adam and I just looked at each other in shock. I minute or two went by and I said, "When mommy and daddy were there with you were you laying on your back or on your face?" Again, without skipping a beat she replied "My back." 

See, here is the interesting part. Adam and I were able to literally walk into the O.R. and physically lay her down on the operating table that day. When we laid her down she was on her back. She was completely drugged up and just about totally out before we walked out of the room. Adam and I stood on her left side and prayed over her. I prayed that the Lord would stand in my place and be there with her while she was in surgery. We watched them as they put all of the monitors on her heart and all over her body and just before they put her under we walked out the doors. 

Once we walked out they flipped her over onto her tummy and placed her head in the stabilization position and began the surgery. The place that I would have been standing when she was flipped on her tummy was her right side....which is where she said the Lord was standing. 

The morning of Henley's surgery at 6:15 am I got this text from a friend: Leslie - the Lord woke me up in the night and told me to pray for you. He gave me a vision of himself hovering over Henley during her surgery. He was a bright light of presence. He also had a fully armed angel standing guard at the door of the operating room. I know today and right at this moment, he is with you all. I pray that you feel His presence overwhelming you as He sings his songs of peace and love over you. We love you and are interceding in prayer. -Elizabeth Miller

I know that Elizabeth didn't know the magnitude of that text the moment she sent it, but it acts as a total confirmation for us on many levels. Certainly, Henley never read that text or knew about my specific prayers over her while she was on the operating room table. She doesn't know what others prayed specifically, she just knows that her Heavenly Father was there with her. He didn't need a million words to calm her spirit, his presence and two words were enough. "Be Brave". In her mind following The Lord is a simple choice, it's not complicated, it's what she knows at her core to be the right thing for her. 

So the next question is when? We are not sure, and I need to call her surgeon to make sure we are in the clear with her incision especially after the setback of her infection which has now healed. We are talking about when this will happen and it's likely Haven and Henley will choose to do this together. We could not be more proud of our girls and we are beyond thankful for the ways that you have prayed over our family. Thank you is just not enough. 

Infection

Well, I was almost positive we were in the clear with Henley. Judging by the pictures everyone would have thought so too until last Thursday. I noticed things were looking a little more red than usual and a tiny spot in the incision looked like it was trying to split. I called Dr. Greenfield's office immediately and sent them a picture. They said if she was not running fever, or any puss was coming out of it and there was no enlarged area on the back of her head that looked like fluid collection then we just needed to keep it really clean, dry and watch it very closely. 

We followed all of those steps and its looked worse and worse day by day. Yesterday we hit a breaking point quite literally. The incision opened up and began bleeding yesterday. Henley came home with blood on the back of her shirt and several times the blood would clot and then open up and start bleeding again. We sent more pictures yesterday and asked them what to do. Dr. Greenfield called me personally and we talked for a little bit on the phone. He said that after seeing the pictures, it was clear that it looked as if it had almost healed completely and something has happened to "make it angry". He was concerned at the level of redness on the lower of the two incisions and said that it looks infected and we need to treat her with antibiotics to try to quickly get this under control. He said we did not need to go to the hospital, but to just get on the meds 4 times a day for 7-10 days and he wants me to send him photo updates daily so he can watch it with us. 

So that is where we are at as of now. We had planned to leave town this weekend but have cancelled all of our plans to stay close to home and near a hospital should anything change beyond this. Please keep Henley in your prayers and pray that she does not start running fever or anything else decides to leak out of the incision. I have seen people get flown back to NYC for things like this and so it makes me a little bit nervous. 

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. 

Update on Leslie's Procedure

Hey everybody, Adam here giving an update on how Leslie's procedure went on Wednesday.

Originally, we thought her procedure would be around 2pm yesterday, but around 9:30 they called and said that they had an opening right then if she wanted to come in early. Not wanting to wait around until 2pm without eating or drinking, Leslie told them she would be there shortly. We spent over 1.5 hours in the pre-op area waiting for the procedure to begin. 

The doctor came and explained the procedure one more time, which involved entering the renal artery with a catheter and embolizing (clot) the artery that was supplying the aneurysm in her kidney. The aneurysm was being caused by an arterial venous malformation, which is basically an abnormal connection between arteries and veins. The embolization would be accomplished by inserting titanium coils into the artery, which would effectively "clog" it up. He expected the procedure to last 2-3 hours. He also thought it was best to enter through the femoral artery in her groin instead of through her wrist because of her Ehlers-Danlos syndrome, which can cause arteries to dissect more easily than the average. He felt the femoral artery was a safer option to avoid this outcome.

They finally came to take her back around 12:15 and I was given a pager and told to go to the family waiting area, which was in a different area of the hospital. After 3 hours went by, I decided to go back up to the area they were performing the procedure, thinking that maybe the pager was broken. The lady at the desk told me the procedure was still in progress and she told me I could wait there and someone would be out shortly. After another 2 hours and not hearing any updates, I started getting anxious and went out to stand by the doors to the pre/post-op area. Finally, a nurse came by and I asked her to get an update for me. At 5:45, someone finally came out and told me that Leslie was doing fine and that the procedure was a little more complicated than they originally thought. She said to expect another hour.

At 6:00, the doctor finally came to tell me they were done. Instead of finding just one artery that needed to be embolized, they found 4! He said that they would get one artery done, and another would show up, then another, & another. Also, according to her scans from December, the aneurysm was measuring 1.9 cm (2 cm is generally when you start to get concerned of a potential rupture), but when they went in to do the procedure, it had grown to 2.6 cm (over an inch) with multiple "tortuous" (twisted) vessels. It was a very good thing that we decided to move forward with this procedure while in New York. This could have turned into an emergent situation given much more time. Dr. McClure said there was no other way this could have been corrected since it was in the "meat" of the kidney. In the attached picture, you can see the kidney before (left) & the kidney after (right) with the arrows pointing to the embolized vessels. Due to the nature of the procedure, the doctor expects her to lose around 10% of her right kidney function from the embolizations, which is much better than the alternative of removing the entire kidney.

Recovery has been difficult, maybe more difficult than Henley's. For one, she was under anesthesia and laying on her back in the same position for over 6 hours, so she was understandably groggy and nauseous. She's been dealing with back spasms from laying on her back for so long, as well as dealing with the inflammation of her kidney due to the embolization procedure, which causes part of the kidney to "die". 

The pain & discomfort was so bad this morning, we had to call a wheel chair to come transport her from our room to the follow up appointment (luckily the hotel we are in is connected to the hospital via an underground tunnel). Once we saw the doctor, it was obvious to him how miserable she was, so his initial recommendation was for us to go to the ER for IV meds. Luckily, he called down to check how busy it was and was told that there were 83 people in line! Knowing that wasn't going to be an expeditious option, he came back with a vial of toradol and administered it to her through a syringe. He then prescribed a muscle relaxant & oral toradol to add to the regimen of percocet.

I, then, left her at the doctor's office in her wheel chair to take Henley to her follow up appointment with the neurosurgeon. After a 30 minute follow up with Henley's surgeon, in which he said that she looked great and was "out of the woods" as far as post-surgery complications go, I went down to pick up Leslie's prescriptions, then went back up to meet with her. 

It was amazing to see the transformation in her after the injection of toradol. She was noticeably more comfortable & relaxed. We were able to get a wheel chair transport back to our hotel room and she has been resting comfortably all day. The injection has seemed to reset her pain so that the oral meds can keep it under control. Right now, we are scheduled to fly back on Monday. We need prayers that she continues to improve and is able to feel well enough to sit on a plane for 4 hours.

Thank you guys so much for supporting us through all of this. We truly could not have made it through this experience without all of your prayers & support. While this has been a great trial, God has provided for our every need in ways that we could have never imagined.

Determined to have some fun.

Just so you don't think we haven't had ANY fun this trip. We were able to have some fun before Henley's surgery and then again the night before mine. Even though we had a blizzard here in NYC we managed to make it to see Aladdin with the whole crew. Navigating a stroller in snow was NOT easy, but we did it. Henley rode in a car, subway stroller the entire time so there was no risk of falling or getting knocked over. I've probably still never been so nervous taking her somewhere in all my life.

You can't even make this stuff up!

Pretty much the story of my life. I've told people for years I am going to write a book about my life one day and call it "You Can't Even Make This Stuff Up." One of my closest friends even told me the other day how sad she was when the soap opera All my Children went off the air and how she had missed the daily saga of Erica Kane's life. She said that our family has really filled that gap for her. So glad we can keep y'all all entertained. With that said, here is your next dose of "You can't even make this stuff up"

We are still in NYC and currently watching buckets of snow come down outside of our hotel room. They are calling it a Nor' Easter. It just looks white and cold to me. Our view is of New York Presbyterian Hospital, one of the top hospitals in this country. I'm so glad we are this close because it looks like I'll be personally having surgery tomorrow. Yes, you read that correctly. Leslie. Surgery. Tomorrow. In New York. 

During Thanksgiving, I started experiencing some serious abdominal pain. I had been "sick" for several weeks with random symptoms. My body seemed to be shutting down. In October I was diagnosed with mono, then in November I woke up one morning with an excruciating headache that did not subside for about 5 weeks....until mid December. I began running a low grade fever and just felt "toxic" and like I was dying for several weeks. I went to the ER had a CT scan of my brain and nothing! About a week later I still had the headache and the fever and began throwing up. Adam rushed me to the doctor and after an exam and talking through symptoms, they tested me for West Nile. That test came back negative, so they decided it must be viral meningitis. We started using our oils like crazy and the fever and symptoms began to subside. Praise the Lord! 

Then the week of Thanksgiving, I still felt terrible, but wasn't going to keep my family from being with everyone out at our ranch. We reluctantly loaded our car and drove out to the ranch for the rest of the week. All I wanted to do was lay in bed. We got out to the ranch and then, as most of you remember, we lost Colby....our precious dog. We spent the entire time we were out there searching for him. This saga went on for 9 weeks of back and forth to the ranch because someone had seen him. All of it was awful. While at the ranch, I was with one of my cousins who is a massage therapist and another who is a nurse. I had been having pain in my right abdomen and thought it was probably just stress. I was asked if I still had my appendix and was encouraged to go home and get to a hospital. I did have all of the symptoms of appendicitis. So we drove home late Sunday night and I took myself to the hospital. I packed my bag being almost certain they would operate. 

After a CT scan of my abdomen, the doctor walks in and says "Well, the good news is... this is not appendicitis. The bad news is, there is a mass inside your kidney." WHAT? Still confused, I called Adam and told him the news. Fast forward. December & January looked like this: MRI, MRI Angiography, Ultrasound. Talk of a biopsy. Appointments with 2 Urologist, 1 Vascular Surgeon, and 1 Kidney Oncologist. I am told by the top Urology Oncologist at North Texas Urology: "This is actually super rare and I have seen only one of these before in the 20 years I've been doing this. I think at the end of the day, this is going to look like us removing your right kidney". 

Not wanting to take that answer and run with it, I kept researching. I expanded my search to NYC. Since we were going to be there anyway for Henley's surgery, why not just get a second opinion from a kidney specialist up there? So, I scheduled an appointment. The specialist was in the same building we were going to be in with Henley and this guy specializes in "non-cancerous kidney masses." Sounds like the guy I need to see. Henley had her surgery on Wednesday and my appointment was on Friday. Adam and I were able to leave my mom in care of Henley and go together to see the doctor. He again reiterated that this was a very rare situation and that even an "expert" in this would maybe see 13 cases like mine in his entire career. He said that his radiologist just happened to be in the office right then and he wanted to discuss with him and come back. 5 minutes later he walks back in and says that the radiologist believes that this is an aneurysm in the middle of my kidney off the main renal artery. This was a confirmation of what we heard before. The doctor said that it was a good thing no one tried to biopsy this because it could have been a bad outcome. (Praise the Lord that didn't happen) Dr. Del Piazza (kidney specialist) said that he actually felt like I really needed to speak to his friend who not only was a Urologist at NY Presbyterian, but also a radiologist at NYP and even more so, a KIDNEY RADIOLOGY SPECIALIST. He "just happened" to be in the office and available to meet with us at that very moment (The Lord orchestrates ALL the details). Dr. McClure came in and talked with us about what this was and how to go about treating it. He said that it was a really good thing no one tried to do a biopsy on this because it was clearly an aneurysm deep in the middle of my kidney and would have caused it to rupture and bleed. Because of its size (1.9 cm), it is right on the cusp of having to intervene surgically. He said that likely would keep growing in size and that at 2 cm I would be at risk for the aneurysm rupturing which would cause an emergent need for a kidney removal and possibly heart complications. 

He said that he wanted to discus my case with his team, but he felt like they might be able to squeeze me in and get this fixed this week. Dr. McClure's office called me later that afternoon and said that he had spoken with his team and they felt like this was the right thing to do and gave the green light to move forward with the procedure. They will be going in to embolize the aneurysm. The plan is to try to go in through my wrist (weird I know) through the radial artery. They will snake a catheter through into my kidney and basically plug up the aneurysm with titanium coils and glue of some sort to close it up. If they can't go through my radial artery they will have to go in through the artery in my groin area. The reason they would try my radial artery is because it's a much shorter recovery time. To the right is a picture of just how huge this mass is inside my kidney. See the big white spot in the middle? That's the aneurysm. 

For those of you who are asking why are we doing this procedure here instead of at home here are the answers if that was not already apparent. 

1. The doctors up here are way more experienced in this specific type of aneurysm and how to treat it without just removing my entire kidney.

2. Both mine and Adam's moms are here in New York as well as Adam's sister and my dad, so we have lots of help with Henley and the other kids. 

3. This is supposed to be an outpatient procedure and I should be able to leave the hospital 3-4 hours after the surgery. 

Thank you for your prayers and for letting me hijack Henley's Caring Bridge to ask for more prayers. This surgery for me will happen tomorrow Wednesday March 15th at 2:00pm at New York Presbyterian. Please pray that the doctors will be able to get access by going through my radial artery, and that this surgery is successful and there are ZERO complications. Pray that this embolism stays exactly where it is supposed to and NEVER moves to another part of my body (not even sure if that's possible). I am not sure why this procedure makes me so nervous after what we just did with Henley last week, but pray for my nerves too. Pray that my kidneys maintain complete function after this procedure and that my arteries and veins are strong enough to handle this procedure without rips or tears in places there shouldn't be. With having Ehlers Danlos Syndrome myself, fragile connective tissue is a concern and makes you more prone to aneurysms. 

Thank you again for following along and loving on us through prayer. Adam will update here tomorrow to let everyone know how it went. Then we will update again on Thursday after Henley's post-op appointment with Dr. Greenfield.

Serendipity

Made it to Serendipity. We wanted to make sure we did a couple things with Haven & Zane before the blizzard came in. This banana spit was AMAZING!!

No boundaries for God

God can provide a support system anywhere. Even thousands of miles away from home. He sees and fills every need. A need for Popsicles, cupcakes, a meal or two, toothbrushes your kids forgot, companionship, kid sitting so you can "have a minute", encouraging notes and fun gifts, and a shoulder to cry on. It's been pretty incredible to watch what all God has unfolded in front of our eyes this past week. We are so thankful for the army of prayer warriors who have stood on the front lines with us for so many years. We are not done with the drama yet, still more on the near horizon, but we seriously could not be doing all of this without you. I have said it countless times, but I do not understand how people make it through life without a relationship with God and a community to link arms with in times of trouble. Thank you all!

CUPCAKES!

She got her cupcakes!! Thank you Jeri Tidmore & Grandmommie for these sweet deliveries. Henley is improving so quickly and we are so thankful.

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

Top 3 Questions I get asked about Henley:

I realize some of you want more details than just the "cliff notes" version and it just dawned on me that I hadn't written anything about the actual surgery that took place and the details of that. I also tend to get the same 3 questions about Henley over and over so I figured, it might be easiest to just address all of those questions in this post. 

1. What did they actually do in the surgery? Well, they first shaved the back of her head. Then they made an incision down the midline of the back of her head. They had to cut through the neck muscles first before getting to the skull, then they were able to access her brain through the area they had removed at the base of her occipital bone in her previous surgery 5 years ago (yes, that means she has been missing bone on the back of her head all this time). Once through the muscle and occipital boney area, they reach the dura (the covering of your brain). They cut through that and were able to get a good look at everything from there. Once they were inside, they determined that her herniated cerebellar tonsils were still healthy tissue and so they choose not to resect those (i.e. cauterize that part of her brain that is falling below her foramen magnum). He felt that he was going to be able to give Henley's brain the space that it needed by sewing in a patch to give her brain some more room to breathe and for spinal fluid to flow freely. There are many approaches to this and where the "patch" tissue comes from. Some surgeons use bovine tissue or other animal tissues. Dr. Greenfield was able to use Henley's own tissue by harvesting tissue from another area on her brain and then placing it over where they had cut the dura. 

So think about it like this, when you get a new pair of jeans and the knees are really tight, then over time you wear out the knees of your jeans and they fit looser or sometimes you rip them and have to sew in a patch. It's the same concept. Henley's brain is just too big for her skull and so in order to keep spinal fluid flowing, they needed to free up some space so that she doesn't have a fluid collection on her brain or in her spinal column. In the first surgery when she was two, they thinned out the lining of the brain (the dura) in hopes of giving her brain casing more elasticity so it wasn't so tight in there. That worked for her for a good 5 years but things change as children grow and so it's a moving target. This time we had to sew in a patch to give more space.

2. What kinds of symptoms was Henley having that caused you to start investigating? Man, if I had a dollar for all the times this question was asked! Here is a list:

* Speech Difficulties. As in, it became physically difficult for her to get words out of her mouth. She would sometimes mix up letters in words that she had been saying for years or not be able to say things clearly that she had always said before like "foot". By the end of the day she was so exhausted from a day of talking she just wanted to be quiet. Over the summer, we noticed ourselves asking Henley to repeat herself over and over because we truly could not understand what she was trying to communicate. 

* Trouble walking. Henley has always gotten overly tired and had trouble walking long distances, but she began tripping and falling a lot. One of her teachers noticed her trip over her feet about 4 times one day while she was walking with assistance from one room to another. She described this as if Henley's brain wasn't telling her feet to move as fast as her body was trying to walk. It became pretty apparent that this was happening more and more frequently and she seemed to just get more clumsy and would be bruised up all the time from one thing or another. When we tested her for physical therapy and occupational therapy, it was even more obvious that she was really overcompensating for basic tasks she couldn't do. For instance, walking a straight line or balancing. This girl would fail any and all sobriety test just walking "normal". We learned that she appeared to the average person that she was just like other kids because she would speed up the activity to make it look like she was able to complete something, but when we slowed her down, she could. not. do. it. She would get so frustrated and cry because it was like her body just wasn't cooperating.

* Difficulty Crossing Midline. This comes into play when you are trying to do things like driving, writing or basically anything that forces you to cross one part of your body over to the other side. Like moving your arm across your body to the other side to grab something. Henley would just overcompensate and do everything in her power to avoid crossing midline. This is a sign that your right brain is not communicating with the left side of the brain. This also can affect the top of your body not talking to the bottom part. For example, jumping jacks? hilarious. (sorry that was terrible) 

* Daily Pain. At school, you would have zero idea because Henley hides it so well. She doesn't want the attention and she really doesn't know what "no pain" feels like. Every. single. night. for months and months she would need an ice pack at bedtime and complain of a headache, leg pain, back pain etc. By the time she had finished holding it together for a day of school, she would just let it all go when she came home. Some days even though she really wanted to go outside and play, she would just lay on the couch while everyone else would go play in the backyard. 

* Trouble Swallowing. We started noticing that she was physically having trouble swallowing certain foods and sometimes would chew and chew on something that she had eaten forever (i.e. grilled cheese sandwiches) and just end up crying because she couldn't seem to swallow it and would have to spit it out. It was heartbreaking. She would chew on simple things like bread and then it was like watching her try to swallow rocks. During a swallow study, we learned that she was overcompensating by drinking out of straws and when we took the straws away and tried to have her drink from an open cup, she would choke. 

* Tiring Easily. Henley just started getting less and less able to handle walking any distance. She would ask to be carried or to ride in a cart constantly. At Target, the grocery store, pretty much everywhere we go, someone was needing to carry her. She is 7...not a toddler. 

3. What about that "other situation" you talked about? You said there were potentially two problems and this surgery was addressing the most pressing issue. So here is the story on that. It's hard to explain in words but I'll do my best. If you look at Henley's MRI from right to left you will see her cerebellum and the herniated cerebellar tonsils that travel down next to her brainstem. Then you see her brainstem in the middle and then her odontoid on the other side of her brainstem (looks like it's at a 45 degree angle). This angle changes when you move your head up and down. It's basically a joint. Henley has Ehlers-Danlos Syndome (EDS) which is a genetic connective tissue disorder that is caused by a defect in the structure, production, or processing of collagen or proteins that interact with collagen. Collagen is kind of like your body’s glue -it is what holds your skin, joints, blood vessels, and other major organs in place. It typically presents itself in childhood or young adulthood with hypermobile joints prone to misalignment, stretchy skin that tears easily, and fragile blood vessels prone to cardiovascular complications (such as aneurysms). Loose ligaments can misalign the proper angle of the odontoid bone causing it to push backwards, compressing the brainstem. Chiari Malformation is a downward displacement of the cerebellar tonsils (part of the brain) that puts pressure on the cerebellum and brainstem from the other side, progressively damaging them over time, and blocking the flow of cerebral spinal fluid (CSF). So, if you understand what I just wrote then you understand that we basically have two potential problems that cause compression of the brainstem. One is on one side and one is on the other. The reason for her surgery this past week was for the Chiari and what it is doing to the spinal fluid flow and the compression from the back of her head to the brainstem. Often times when you do the Chiari surgery to remove the pressure on the back side, it causes even more instability on the other side. SO, all that said, you have to have a surgeon who understands both of those issues and how one effects the other so that they can take all of that into consideration. There is a very real possibility that one day down the road Henley might have to have a Craniocervical fusion. It's an awful procedure and we want to pray against this for her. So please, every time you think of Henley or our family, pray against any instability in her spine and head. 

So, there you are. Those are the most commonly asked questions I get and there are your answers. 

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.