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.