March 7th, a day that will be forever ingrained in my head as the day we almost lost my soul mate and best friend far too early.
I woke up to a text from my friend, Kerri Bates. It was a beautiful prayer for strength and for peace to cover me that day as we had planned to get more answers from doctors as to why Ross was so sick and in so much pain for a week. We had been treating him for an upper respiratory infection gone flu for a week and he was only getting worse over the weekend. Kerri knew my concern was heightened and Monday morning began the prayer coverage.
Moments after reading her text, I heard Ross' alarm going off in our bedroom. The kids had gone to Abilene to be shared by our family with hopes of them dodging the flu from daddy. I went to our bedroom to find Ross barely responsive. His alarm had been going off for 2 hours. I "knew" at that moment something was VERY wrong. He could not talk to me and the more I tried to get him to talk, the less responsive he became. Within 10 minutes, he could only say "huh" and didn't know who I was, who he was, or what day it was. I tried to dress him to take him to the ER, but he was uncooperative. I called 911 immediately and they were here in literally 5 minutes. In that time frame, Ross left me. He explains it as being trapped in his body. He could hear us, but could not respond. He looked as if he was having some sort of small seizure... stiffened, eye twitching, and no bodily control. It was shocking and terrifying. Praise God my children were not home!
You know you live in a small town when you call 911 and the preacher arrives on the scene before the EMS can get Ross out the door! Dorman drove me to the hospital and there the fear unfolded.
Doctors in the ER were wonderful! They explained that he had some kind of meningitis and they had to do a spinal tap ASAP.
I held Ross' head as the nurses and I tried to keep him still. Ross was in so much pain... his head was hurting him so badly! My Aunt Debra was in the ER with me praying and keeping me calm and fed. Being in shock, I was amazingly collected and almost fearsome in strength. It was surreal. I was not going to let my mind go were it wanted to lead me. When the doctors said sepsis, my Aunt immediately prayed over me as I struggled to breathe. Jenny, my friend and wife and mom died less than a year ago from the flu gone bad. My mind wanted to scream in fear, but the God strength in me allowed for hope.
Ross was Care Flighted from Graham to Fort Worth arriving at Harris Methodist in 20 minutes! It was long drive for me, for all of our family, not knowing what awaited us in FW. Ross' brothers were the first to arrive in Fort Worth from Abilene. ( Officer Mark had a little more legality in his speed!)
When we arrived at the ER, Ross was stable. Still non-responsive for the most part. I could get him to squeeze my hand every now and then. He would smell me when he would get upset and uncooperative and he would calm down. It was such a reminder to me of how much Ross loves me. Those hours were precious to me. Those moments of nearness thrilled my heart not knowing what the next moment held. Through all of this, we wore masks and gloves not knowing what "disease" was trying to take over Ross' body. It was a real life ER Episode!
After EEG, blood work, IV's and all kinds of tests, it was time for his MRI and move to ICU. I could not leave him. Something within me HAD to stay by his side. The ER nurses approved me following along and praise God I did! He came out of his "non responsive state" just moments after being wheeled out of the ER! He called for me and asked where he was going. We explained that he had meningitis very bad and he replied, "No way! I have meningitis" He hugged me and told me he loved me and he was wheeled into the MRI room.
You see, we kept doing the neck to chin test like we read about and Ross was never stiff. He had a low fever never above 102. He was atypical in his meningitis symptoms besides the piercing headache and dizziness. All of which kept him home and in bed the full week prior to March 7th. I had researched on Mayo Clinic website all of the possibilities, and yet his symptoms kept leading us to flu. We had gone to the doctor twice and an eye doctor because his eyes were extremely red. So weird.
Ross talking at 11:30 pm was the first time I really breathed all day. His working diagnosis was/is Herpetic Meningoencephalitis. (Herpes 3- same as chicken pox or cold sores) He had a teeny tiny stroke in the thick of things. The Neurologist, Dr.Cheng, says there will be no repercussions! He stayed in ICU four days and was moved to a private room Thursday afternoon.
Thursday evening, March 10th, Liam our 23month old son back in Abilene, had been sick with his sister, Myra and cousin, Hank all sharing the same virus. Liam just wasn't getting better. Katie, my sister, knew Liam needed his mommy. So, Ross' parents, Roger and Janet, came from Abilene to be with Ross. And I, in a round about way, got to Abilene. (a shout out to Lindsey McKnight and the Pearces- holla!!)
Liam was very sick. High fever, wheezing, coughing, lethargic. He started a stronger antibiotic Thursday evening. By Friday morning, he was hallucinating and completely out of sorts. Inconsolable. Screaming, Yelling and barking. Scratching his ears and cheeks, stuffing hid hand down his mouth, arching his back, It was awful!
Dr. Schudde had been treating him, and after seeing him in his office behaving so strangely- loopy, silly, playful and dizzy one minute, then snaps into the above "episode"- admitted him to Hendricks for a Spinal Tap and observation.
I am not one to speak ill of much anything. But our experience at Hendricks was awful. The nurses had written me off as a wife who was overreacting due to her husband's situation. It was absurd. It was amazing I kept cool. My sister and brother in law helped me write down everything Liam was doing because my brain was fried by this point and the nurses were of no help. God provided a way out when two doctors, both not at Hendrick hospital, Dr. Schudde who had to leave town for family illness and Ross' Infectious Disease doctor, Dr Colquitt, recommended I ask for a pediatric neurologist because of Liam's neurological behavior. Abilene does not have a pediatric neurologist and that was why we were sent to Cooks. (hallelujah!) Should I delete this complaint? Les, tell me and I'll delete it. :)
But the story changed for us as we step onto the Guardian vehicle that hauled Liam and I to Cooks. Peace. Peace so thick you could cut it with a butter knife! Liam slept in my lap and Matt, the EMS guy, prayed over us. He spoke to me a word from the Lord. Literally. He spoke a very intimate and unusual word that Ross and I and my very close SIC Bible study girlfriends would know. I was listening. Intently. God's peace reigned and the "knowing" beyond understanding that everything was going to be fine gave me such resolve. It gave Ross, a worried, sick daddy (we'll get back to him) resolve and peace. I only had to say our "word" and he and I cried with Joy. Yes, Joy that in the midst of all this trauma, God was cradling us in His arms and we were okay. Matt saw a 10 minute "episode" and said, " You aren't crazy like the nurses said. Something IS wrong with your little boy!" Ha!
side note-Ross was discharged Saturday night as we were riding to Cooks and Home Health was waiting to train him on his home IV in Graham. He was up until 2:00 am!! Roger and Janet were troopers!! They hauled him home and cared for him so well!
Liam's tests were all negative and after getting his lungs cleared out, he had had ENOUGH. Little Red Man was throwing crying fits now. Very different from the "episodes" he was having for shorter bursts and maybe twice a day. The doctors think the virus got into his brain as well as having an allergic reaction to the antibiotic making for a sick, scared baby. Apparently, its not uncommon for viruses to get into toddler's brains and cause erratic behavior. Dr. Aldridge at Cooks was so encouraging having had her son do the same thing Liam had done when he was 20 months old. God supplied peace again as we left Cooks.
So, Monday evening (14th) Liam was discharged...
...As Ross was being readmitted to Harris. His headache had become horrible again and he had fever. And oh, so very red eyes!!
Talk about wanting to be two places at the same time. Liam was like a leech- he was not letting go of Mommy. Mommy did not want to leave Ross. But, Ross' mom was there so I knew Ross was in good hands with his mom and Liam needed to be cared for by his mommy. My parents drove us to Abilene because Liam wanted his sister and cousin and at this point, I needed to see Myra, too!
Ross improved and rested and got his pain managed. He saw Dr. Willis, an eye doctor and surgeon, who diagnosed Ross with Secondary Glaucoma. He was discharged Friday, March 18th after the kids and I went to visit him in the hospital. He was sent home with another week of IV Antiviral medication. We finished the IV's and saw Dr. Colquitt (Infectious Disease) last Saturday who took out his PICC line and said, "call me if you need me. Start walking a little bit each day with someone." ( In case he falls)
BTW- Ross is not contagious and has not been contagious since day three in ICU. :) And Liam did not have the same virus as Ross.
He is currently taking an anti-inflammatory drug, an anti- seizure drug to keep his brain from going haywire again, and eye drops to keep pressure down and help with redness.
So, future prognosis- GREAT!! Timeline to get "there" a long while. Six months of no driving. Two and half weeks until we see the neuro Dr. Cheng for another EEG of his brain. Seeing a Retina Specialist tomorrow in FW and a Neuro Eye doc April 7th in Dallas. The Secondary Glaucoma is under control and is expected to dissipate when the brain inflammation is gone. Ross' vision is very impaired right now. 4x's worse than his previous vision. We got him some glasses with plans to change out the lenses as his eyes heal. He can't read right now, so he's pretty bored. I think its more reason for him to close his eyes and sleep. :)
We wait for his body to heal. Encephalitis is a tricky thing. Most don't make it or have morbidity... we have none. "We" means "Ross" but ya know the two shall become one thing... it feels like "we". WE feel blessed beyond words. Ross is very tired and weak- although his strength is improving. He can stand for longer periods of time on good days. And his endurance is building to 20-30 minutes out of bed. He lapped the yard 5 times two days ago! And today was a marathon of doctor visits and picking out glasses. He's helped me put the kids to bed three days in a row... lays beside them and sings or "reads" a story to them. HE is an amazing Daddy!
Now you know what your prayers have been covering for the past three weeks!! Thank you for ALL the PRAYERS and support for our family during this trying time. We have yet to wrap our minds around the last month, but our loved ones have truly helped us feel a little "normal". We have been completely humbled by the outpouring of love... from people we know and people we don't. To know humans all over the planet are praying for us gives us such strength and peace!
Thank you for the meals. Thank you for the money. Thank you for loving our children! We praise God for you hourly!
Sorry this is so long and "raw". I'm still quite tired myself, but really wanted you to have the facts of what we are going through.
Our prayer today is for his eyes to heal completely, headaches to go away, and for his strength to grow. And as the healing takes place, for us to both listen to God as our hearts and minds are being transformed during this journey.
Love you & 4 Big Hugs from us!!
Jamie