Drew and Crystal both had surgery last Friday, April 11th. Both surgeries were very successful! Dr.Spetzler removed both brainstem cavernomas successfully with no complications.
Crystal: She woke up talking and could feel all extremities. She said "God is good!" and everything was as good as it could be. Later that night, she started having trouble speaking. She also had a lot of sleep apnea, which is not good at all when you are recovering from Brain surgery. As hours passed, her speech got worse as well as other neurological deficits that started popping up, and her difficulty breathing. MRI showed some spinal cord leakage and a drain was put in. This is a facebook post from her mother:
"About 4am eastern time Sunday they rushed her for a Stat CT of her head. Neuro dr just came by & feels good with results from their perspective. I asked for a chest X-ray. Her work of breathing is becoming an issue. Got her back on CPAP with 50 percent oxygen bleed in & her respiratory rate is slowed from 40's to about 28. Oxygen level is holding @ 95. My concern is her wearing herself out. Her chest sounds junkie. She is resting right now. PLEASE keep her in your prayers"
A few hours later, she posted this one:
"Crystal is having some complications and has been reintubated and on the vent. They have taken her for another CT. They feel the swelling in the brainstem is the root of the problems. I'll share info as I know more. PLEASE KEEP PRAYING for my girl. Love to ALL of you. They're taking GREAT care of her."
Needless to say, we went from crying tears of joy that the surgery went so well and Crystal was awake and well, to crying tears of worry!! Crystal amazingly strong mama has been posting one or two updates a day since. Here they are:
Sunday Night (2 days post op) :"no changes since going on the vent. Resting & healing are the focus right now. They are taking great care of our girl. I'm going to TRY to rest now but I promise to keep ya'll updated. Love ya'll!!!!!"
She is completely sedated so she can rest, pain free, and heal."
Monday (3 days post op):
am: "Crystal is still on a ventilator. They did an MRI and it looks good. She is stable but they are concerned about fluid leaking to her spinal cord. If it continues they will have to drain it, but they do not expect any issues. She is still sedated."
"Not a lot of change. She is still on the vent with a little less oxygen being added (down from 60 to 50 percent). They did place the lumbar drain. PLEASE don't stop your prayers!!! Had to tell Sara today that Mommy isn't coming home tomorrow as originally planned. She took it quite well. I didn't!!! I hung up and sobbed....my heart hurts for my babies!!!! Gotta take the rental car back tonight. Then catch a taxi back here. This should be fun...NOT!! I'll update ya'll tomorrow or if there is any change."
pm: " again...rough day for her lungs today. She is in ARDS. BUT they have been very aggressive in heading it off. It's very difficult to fully explain but the WONDERFUL news is that she is responding favorably and resting well now. She is far from thru this but we are headed in the right direction!!! Soooo Whoo-hoo!!! I'm gonna TRY to crash in a few minutes but I'll keep ya'll posted. PRAYERS are working!!!!!!
Tuesday (4 days post op)
am: Crystal rested well last night. Good news on neuro! The spinal fluid leakage is doing well with no more seeping from incision site!!! Respiratory not as good. They've cranked up the oxygen to 80 percent. Bronched her with VERY little return & what they DID get isn't good. MY worry right now is the development of A.R.D.S. (Acute respiratory distress syndrome (ARDS) is the sudden failure of the respiratory (breathing) system.)Anxious to talk with pulmonologist for his thoughts...Love ya'll!!!!"
pm: again...rough day for her lungs today. She is in ARDS. BUT they have been very aggressive in heading it off. It's very difficult to fully explain but the WONDERFUL news is that she is responding favorably and resting well now. She is far from thru this but we are headed in the right direction!!! Soooo Whoo-hoo!!! I'm gonna TRY to crash in a few minutes but I'll keep ya'll posted. PRAYERS are working!!!!!!
Wednesday (5 days post op)
am: Great news!! "They just did a chest X-ray. Right lung definition and left Upper!!!!! We're going in the right direction!!!!! Prayers are working ya'll!!!!"
pm: ""Crystal has had a good day! (yesterday) Slow but steady progress!!! Yay!!! They have been weaning her Fi02 (oxygen) & have it down to 50 percent. They'll probably let her rest there tonight and shoot for getting to 40 tomorrow. Once there they will probably start to wean the PEEP (pressure maintained in the lung at the end of breathing out). They need to take it from the current setting of 12 down to 5. I expect that will be tomorrow's goal...we'll see. PLEASE keep praying!!!!! Love ya'll!!!!!"
This is where we are now. Today is Thursday :) I wanted to keep you up to date, just so if you do not use facebook, you know what is going on and you can pray for our girl!
That brings me to Drew!! Drew has had one heck of a ride. After surgery Friday, he woke up sick and in pain, as expected. However, he could move all his extremities. He has had pins and needles in his arms and his legs were numb, but he was able to walk to the restroom just a few hours after surgery, which is remarkable!!
However, Before his brainstem surgery, it was found that he had a second CM, in the right ventricle.
The ventricles are filled with cerebrospinal fluid (CSF) which bathes and cushions the brain and spinal cord within their bony confines. So obviously, when operating in the Ventricule, the risk of fluid leaking, and bleeding, is higher than other parts of the brain. Dr.Spetzler strongly recommended that they remove the 2nd Cavernoma found while they were there in Phoenix, and even tho other surgeons could do the operation, Dr.Spetzler was going to do it.
Drew' second brain surgery was set for Monday. He was scared, in pain, and depressed. That is a lot to take for a 15yo who doesnt fully understand how amazing he is doing! Its hard to understand how great you are doing when you feel this horrible!! However, the second surgery was a success. Dr.Spetzler was able to remove the cavernoma and avoid leackage. Drew woke up finding his legs even more numb than they were, but no new deficits at all!! Once the surgery over, he could focus on getting better and put all that fear of those surgeries behind him!!
His mother called me last night... Well, after a post Op MRI yesterday, Dr.Spetzler saw that there is a THIRD cavernoma... This third one is actually a bit deeper than the second one, in the ventricle and was not seen at the previous MRI , because it was covered by that second one on top. So... he is strongly suggesting surgery to remove it, because Drew is strong and the wound is fresh. They would not need to saw the skull again, just remove the same piece. It is deeper and will carry a bit more risks than the second surgery. Drew still cant feel his legs and is scared. Please continue to pray for Drew and his family. The roller coaster they have been on his scary and totally draining!! On the positive side... its amazing that they are there right now, under Dr.Spetzler's care, and making sure that Drew has a bright future. Nobody would have ever known about this hidden monster if Dr.Spetzler was not amazing at what he does.
This third cavernoma is deep in the ventricle. If it was ever to be left there and bleed, this could put him in a coma instantly. It is so difficult to put him thru a third surgery, but it would be worse to do nothing at this perfect time to do it, just to have it worse later.
Drew was in a very happy mood Tuesday and Wednesday before finding out of this 3rd upcoming surgery. The stress and fears were finally down and he could focus on what is ahead.
He has been so strong and his body has responded so incredibly well those the surgeries, that it can only keep bring him more miracles. It has to. SO please continue praying for him and his family.
All this said, surgery is tomorrow for Drew. I cant imagine the roller coaster of stress this family has gone thru. Please keep praying, and share with your friends and loved ones. We need an army of prayers warriors.