Update Easter Sunday 8:00 p.m Update @ Holy Saturday 11:54 p.m. Update @ Holy Saturday 3 p.m: Please join us in prayer tonight between 6-10 p.m. for our daughter Courtney. If she is able to handle whatever seizures breakthrough during this most vulnerable time of the day AND her blood pressure stays stable they will allow us to go home tomorrow afternoon. PLEASE pass this request along to anyone you know who would pray with us. We could use an Easter miracle! Courtney and I thank you so much! "Dark can give birth to life, suffering can deliver grace, the ugly can be beautiful. God transfigures everything for His glory."
Ann Voskamp "1,000 Gifts"
It has been a tough 72 hours here at Camp Lenaburg. During Holy Thursday Mass, smack dab in the middle of the homily as a matter of fact, Miss Courtney decided to turn the world upside down. She had a five minute grand mal seizure with all the bells and whistles. The arms and legs extended at odd angles and pulsating, her gurgling deep in her throat, yelling and cries of dismay and fear followed by complete silence except for her struggle to breath. I escaped Mass quickly and got her calmed down in the community hall adjoining our sanctuary. One grand mal seizure a day is typical for her so I wasn't alarmed. After she was done I waited and a moment or two and we went back to stand in the back of the vestibule to hear the rest of the Mass. Jerry was having his feet washed as one of the Twelve Apostles that night, so we quietly watched this beautiful tradition take place from the back. All was well. Then, about five minutes later it happened again. Same protocol followed and in about three minutes the seizure stopped. OK. This is going to be interesting So I stayed right by her side and watched the Eucharistic Prayer and about four or five minutes in she seized again. This time it didn't seem to end. After about eight minutes she finally stopped and smiled. It's like a rainbow at the end of a really bad thunderstorm that smile. I knew then for certain that something was definitely wrong and at the end of Mass we would probably be heading to the hospital. I watched Father begin to distribute Holy Communion and I knew deep inside that I needed to make sure Courtney received Communion. I just knew she needed the support of Our Lord and I know I did. So we received without any other seizure activity until we headed back to the vestibule when the "rolling seizures" began. Small petite mal seizures where her hands curl in, shoulders shrug and shake, she turns her head and drools while her eyes completely dilate for about 30 seconds then her whole body releases. This goes on every 2-3 minutes. Yep, we were off to the ER as soon as I could pull Jerry from the crowd.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "
As Mass was letting out, I stayed toward the back standing next to Court as she rolled into one quiet seizure after another. Jerry saw the look on my face and hurried over. I asked him to grab our Pastor so he could anoint Courtney before we left. She was breathing fine and I wanted to make sure that if the night did not go in a positive direction she was anointed and prepared.
Father obliged then we were off. We headed to Fair Oakes Hospital the closest to our home assuming we would be there long enough for them to administer some heavier meds to stop the seizures then we could take her home. A mom can dream can't she? This was not to be. They ER team worked very hard over the course of the next four hours to stabilize her and stop the seizures. After 4 mg of Ativan, double the amount it has taken in the past to stop her seizures, she was still having breakthroughs. Her neurology team practices out of Georgetown University Hospital in DC so Fair Oakes hopped back on the line with them and decided it was best to transport Courtney there so she could be with those who knew her neurological history best. We were in whole new territory now. We would not be taking our girl home tonight. It was now midnight and Miss Court was still showing signs of seizures even with the extra drugs. Her breathing was good, no obstruction to her oxygen levels and her blood pressure stable, both excellent signs. She was out of serious danger for now. So I told Jerry to head home to sleep and I would handle the transfer and re-admit at GU. Nothing would be happening until the morning when I had no doubt and onslaught of tests would begin to figure what was going on inside that wee brain if hers.
So Daddy said his goodbyes and gave a million kisses to his girl. Told her everything he needed to in case the ambulance ride went south. After the last five hours I knew this was possible but we both felt like she was stable enough for him to head home. Then the transport team arrived and we were off. I will tell you that one of my least favorite things to do in life is ride in an ambulance. Ugh...it's horrific. Every bump between Fairfax and DC...yep...I felt it. As we were traveling down RT 66, Courtney was very still and quiet with the meds finally taking over and the seizures stopping completely. I watched her breath in and out. It was oddly comforting, I must say. Then things slowly changed. The EMT looked down at the machines and stared at her numbers. Then he put down his laptop quietly and hung another bag of fluids. I asked what the issue was and he said her blood pressure was beginning to drop. Crap, Crap, Crap...this is my one fear with giving her all the meds. That they might challenge her little heart too much and she may crash. As she get's older and her body is unable to handle all the stress as well as she used to, this becomes a real possibility.
It's interesting for me to look back at that moment. I had a brief thought of panic and then I was completely overwhelmed with a sense of peace. I mean it was complete peace and without a doubt in my hear or my headt. I closed my eyes and gave her once more over to Our Lord. Your will be done Lord. She is yours. Your will. Your will. I just repeated that over and over again. I bent down and kissed the top of her curly head. A few moments later, the EMT told me things had stabalized. She was holding her own. She's yours Lord. Your will. Your will. I got out my phone and updated my Twitter since it was my only communication with all those who were praying for her. I knew it would post to FB as well. We needed ALL the help we could get from those here and the Communion of Saints. Upon arriving at GU we were met by her team and swiftly taken up to the PICU. We went through all the drills of a new admit and after an hour or so, about 3a.m. she fell into a deep sleep. Life was looking up.
Most of Good Friday passed peacefully for Courtney. She slept until late in the afternoon, but when she woke up and smiled. She started babbling like her normal self happy and clear eyed. The seizures stayed away. We were hopeful we could go home that night. Not so much... The Docs wanted to get and EEG to take a look at what was happening inside the brain, to see if they could figure out a game plan on how to help her if she started seizing again. So they decided on a 24 EEG. Courtney would be wearing her own crown of thorns for Good Friday. The first few hours she was happy and pretty much ignored the stuff on her head. Then she started getting restless and began pulling at it. So with Daddy on one side of the bed and Mommy on the other, we played "Capture Courtney's hand before she tears out the EEG leads" for the next several hours. Then she decided that if they wanted to see seizure activity, well, who was she to deny them. Over the course of the next four hours she has well over 20 seizures and she was still going strong. They medicated her once more and that seemed to do the trick. But again we were faced with low blood pressures. So frustrating!
So for the second night in a row, Jerry and I sat by her bedside and waited and watched. The meds took their time but three hours later she was calm and seizure free once more. So I sent Jerry home to sleep knowing I could not leave her. After another hour she woke a bit and was quite restless from 1-3 a.m. this morning. It was another battle of trying to get her to keep the EEG leads in. Finally by 3:30 a.m. she fell into a deep sleep. I laid down on the cot next to her and slept for a few hours myself. I think at this pint I could sleep a year and I would still be tired. This morning we are waiting for the Docs to decide the next part of the plan. The EEG leads will come off in a few hours and then a determination will be made to either let us go home with increased med support and come back later in the week for a sedated MRI or keep us here, wait and watch, and do the MRI on Tuesday. Because Courtney has a VNS device, she has to have a specialized MRI, where the magnet to the MRI is turned off AND a neurologist has to be present to turn off her VNS, device then turn it back on when the MRI is done. On top of that there has to be a sedation team present since she can't move in the MRI and needs to be sedated to guarantee that. So much for a simple test. Of course you know it's Easter weekend right?? Right. Not a sedation team in sight. So we wait once more by the bedside of this special lady as the Blessed Mother did with Our Lord. Watching for new life, a new direction, a new protocol that will lead our daughter home to us.
"Eternal God, in whom mercy is endless and the treasury of compassion — inexhaustible, look kindly upon us and increase Your mercy in us, that in difficult moments we might not despair nor become despondent, but with great confidence submit ourselves to Your holy will, which is Love and Mercy itself."
Divine Mercy Novena
Will you watch with us? We do not walk this road alone. As Christians we walk hand in hand always lifting our eyes to heaven and holding the Glory Revealed close to our hearts. Thank you for every prayer, every tweet, every Facebook entry and every kind and healing thought sent our daughter's way. We have started the Divine Mercy Novena for her. We call it "Courtney's Novena" since every time it has been said on her behalf, miracles abound! Thank you for standing watch with us. Mary