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.

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.  

Surgery is OVER in record time

Wow! I mean WOW. Dr. Greenfield just came out and said he is DONE! Like an hour earlier than expected!!

The best way to tell you what happened is to give you the response to the specific prayer requests we asked for yesterday. 

SPECIFIC PRAYER REQUEST:For all of our Prayer Warriors, here is what you can be praying for specifically.

1. Dr. Greenfield. Pray that he has the best nights sleep of his life. That he wakes up peaceful and has unbelievable clarity tomorrow. Pray that Henley's surgery is the best surgery he has ever performed and the results are PERFECT. Dr. Greenfield said that once he opened her up it was very clear what he needed to do in her specific situation. His exact words were "It was not ambiguous at all, there was no question what needed to happen here." Prayers for absolute clarity were answered. I specifically asked how he slept last night and he said he actually slept great. ;-) 

2. Pray that the LORD'S hands are performing the surgery in the place of his hands. I had a friend message me this this morning: "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." We have felt peace in this moment for sure. It's an unbelievable feeling. 

3. Pray that there are NO complications, NO Infection (meningitis is a big risk with this surgery), NO spinal fluid leaks, NO spinal fluid collection or any need for extra blood, and that the time she is under anesthesia is minimal. Dr. Greenfield said that when he got in there that he did not feel like he needed to remove the part of the brain that was hanging down because the tissue all looked healthy. He said that the arachnoid space was all very much intact and therefore she had almost no risk of a spinal fluid leak! There was no need for extra blood and she was only under anesthesia for about 3 hours as opposed to the 4-5 hours we were expecting. There were no complications and everything was very clear cut.  

4. Pray for her heart to be strong, her lungs to be clear, and her brain to function properly. She is healthy and stable. Praise the Lord. 

5. Pray that this surgery is THE LAST surgery she will ever have to have and that THIS surgery will alleviate the need for any future surgeries. (Because this is one of two potential problems she has regarding compression on her brainstem and we are addressing the most important of the two issues tomorrow) This is to be determined, but we will keep claiming that this is all that will need to be done. 

6. Pray for the nursing staff to be EXCEPTIONAL. For them to be sweet and caring, kind, compassionate and that they will go above and beyond to make sure this is a good experience for Henley. So far so good. We are about to head to the PICU and so we are about to really experience the nursing staff now. 

7. Finally, pray for PEACE for us, and for Henley. She is so nervous. She is worried about the pain she knows she is going to be in and we are anxious at the thought of not being able to do anything to make it better. It's unbelievably hard to know that you are willingly walking your child into a situation that is going to cause her a lot of pain. Even when you know it's the right thing to do and that it's the doorway to a much better life. It still doesn't make this any easier. We have had peace. LOTS of peace. God is so good and has surrounded us with exactly what we needed in this moment and on this day. Our good friends from Texas are here with us who have a daughter (Darby) who also has Chiari and sees Dr. Greenfield. They "just happen" to have an appointment tomorrow with him and so were scheduled to be here at the same time. God is in ALL the details!

THANK YOU FOR PRAYING. Keep praying! Now comes the REALLY hard part which is the pain she will be in and all of the IVs and uncomfortable-ness that comes with recovery. We will post more in a little bit after we see her and can get a handle on the situation. 

Love you all. 

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.