Working 9 to 5

Ross has been released to go back to work! Yahoo!! So, he'll actually work 7:30 to 4:00 and finish out the last week of school. His PT has turned into "Personal Training" because he is doing so well and getting stronger. We are excited to see how his body holds up next week among the crazy 5th graders. Keep Ross in your prayers as I know you have been.

Lots of love!!

~Jamie

Healing

Ross is improving weekly! Thank you for the prayers lifted on his/our behalf. In the last month, he has gone from being "up and about" for 20 minutes at a time to challenging his afternoon nap for the last week. He is up and about all day.

We stopped Glaucoma drops last week to see how his eyes are doing. The pressures have been perfect for the last month and all the inflammation is out of the front of the eye! Yahoo! His left Optic nerve is still swollen and has fluid around it. Thus, we go get a spinal tap tomorrow in Dallas to see if there is pressure in his brain. the Neuro- Ophthalmologist needs to know the pressure in order to move forward in the treatment of Ross' eye. He has ringing in his left ear and pressure around the ear as well.

He has an extended EEG June 1st to measure what's going on his brain. We are praying for no seizure like activity. No spikes. Normal movement and not "slow" like the last one.

We won't get info from this until mid July. He continues to take Keppra and will continue this from 6 months to a year. He can not drive until September.

Ross had his first PT (Physical Therapy) appointment last Thursday. It went very well! He has a ways to go and the therapist is working with him to set goals of getting back to work ASAP. Ross loves to work out, but being basically bed ridden for 8 weeks makes it challenging. HE is doing great and really enjoys PT.

Ross helped me dig out a patch of grass in our backyard for a 10x4 veggie garden. The weather was perfect midweek. He did great and considered it his PT for the day. :) We are going to start doing Yoga together... this is my Mother's Day gift. Research shows that yoga is incredible for brain health and for auto-immune health (me). I think we are perfect candidates to make it a regular practice. :)

The biggest challenges are fatigue and dizziness for Ross. His vision is getting a little better it seems. He has much more clarity and control of his thoughts and responses. He is almost "normal". We start OT next week to measure how he's improving in that area.

Ross is a trooper! He is pushing himself to get stronger yet resting as needed to allow for healing. He has a positive attitude and excitement for life. You might see him out and about more as he re-socializes himself and gets used to the outside world. :)

Thanks for the prayers and encouragement!! Keep them going!! We are nearly "there"!!

Blessings,

Jamie

Shhh, I'm talking to the Doctor

Thank you for all your prayers! Thank you for all the food and play dates!! And thank you for encouraging us with cards, tokens of affection, thoughtful gifts and emails! Thank you, family, for taking days off work to come watch our children while we hit the HWY for appointments. The collaborative effort of all of us has given me such strength and peace. "Strength in numbers" was chalked onto my driveway when I drove home for the first time after the trauma. It has held true!

Yesterday was a long day in Fort Worth. We saw Dr. Cheng (neurologist) at 10:00 am. She came in and said, "Wow, Ross you look so good! You are all better!"

It was hard to see Ross' face when he had to say no. He wants to believe he is all better. I want to believe he is all better!! But, he isn't. Those of us who know Ross can tell he doesn't look all better, but all Dr Cheng has to compare to is what she saw in the hospital. (He looked pretty bad there with excruciating headaches!)
The night before our appointments, he was unable to follow conversation and was very confused by simple questions. It scared me a little bit, so of course I made him sit up in bed and try harder to have a conversation with me. It was strange. He did not comprehend half of our conversation. He would answer off subject. It was like talking to a drunk man. :) He is not like this all of the time. Mainly when he is tired. He has had a low grade fever twice in one week. We don't like that either.

Dr. Cheng lowered his anti-seizure drug hoping to help with the sleepiness/drunkenness. She also added a drug to help with the headaches he is still having everyday. The drug is designed to lower swelling or inner-cranial pressure in the brain. It is given to head trauma patients and to those with migraines. It's a diverse drug and she hopes it will help with the eyes as well.

The second prescription from Dr. Cheng is to exercise! To get his body and brain moving! Funny, huh? She said even if his brain is swollen, exercise will not hurt that. The dizziness makes this challenging, but Ross is up for the task! So, if you see him running down the street, watch out if he's in the middle of the road! ha! He's got to work up to running... he walked about 8 laps around the house today, bathed the kids, and served himself often. He's conflicted inside because he doesn't feel well, yet he wants to do his best to follow Dr. Cheng's request. I'm considering getting him a gym membership so he can get on an elliptical machine and lift some weights. Ross doesn't want to go because of all the germs and his risk of picking them up. WE will see. We hope that in a month at his re-evaluation, he will be doing much better and Dr. Cheng will run an EEG to find a normal brain wave pattern!

Now, let me introduce Dr. Jones the neuro ophthalmologist. He is from UT Southwestern and has an office in Fort Worth he visits Tuesdays and Thursdays. He is very thorough! (4 hour appointment, mostly waiting) He found Ross' eyes to be swollen. :( The optic nerve is swollen which made him conclude Ross' brain is probably swollen. He wanted to do another spinal tap to find out the exact pressure, but at 5:30 could not get clearance from Dr. Cheng who had just left for vacation. He felt the new medicine Dr. Cheng prescribed would be a perfect fit for the swelling in the eyes as well. So, he sent us home with more questions and more "self-research" about swollen optic nerves. I don't like what I've read so far... he has typical symptoms from the infection. I pray we have caught it in time to preserve Ross' eye sight. I'm wondering why we didn't see a neuro ophthalmologist sooner?
We go back next Thursday to measure the swelling.

Please pray for Ross' eyes and brain. Pray for us to feel like we are improving or for us to have clear signs that we aren't. Pray for us to have PEACE as we push Ross' body to exercise and as we wait and watch for his body to respond. In all of this, there are so many questions and unanswered theories as to what virus Ross had. If a spinal tap would give more info to the doctors about this as well, we are all for doing another as long as it is safe for his brain.

Here's a scripture my sister in law prayed over us Thursday and it's just perfect! Please join her in praying this scripture for us...

Romans 15:13 in the Message says: "Oh! May the God of green hope fill you up with JOY, fill you up with PEACE, so that your believing lives, filled with the life-giving energy of the Holy Spirit, will brim over with HOPE!"

So, you're probably wondering how we are feeling emotionally. We are both a little frustrated. This is to be expected with any prolonged recovery. Letting go and healing and becoming who we really are is not easy (Rachel Naomi Remen). We are not frustrated with our doctors. We have been cared for extremely well. We are both so tired that we forget to ask certain questions even when I have them written down. ha! (or grrr) I think of new questions to ask after we get home. (grr, grr)
Honestly, Ross has a hard time answering questions about how he feels. He has a difficult time assessing. He has never been sick and when you are sick for a long time, pain or discomfort starts to feel "normal". We journal at the end of the day short notes about how he felt that day. I know Ross is not back to himself because it takes a long time to get his mind to process and understand simple questions. His classic response these days, "I don't know." And you all know me, I won't settle for an I don't know. So, I put on my nurse hat and start probing. :)

We make a great team! The kids are doing well! They are great therapy for us!! Liam is such a ham, and Myra's sweetness melts us! Liam is wanting to play with and be held by Daddy more and more each day. Ross is a great Father!! He is a wonderful husband and friend! We are BELIEVING in HEALING and focusing on positive thoughts!! God's truths and God's peace really do reign most hours. We look forward to the day when we post, "All better!!" Until then, keep us close to your heart.

* Myra calls the doctor through out the day on her "cell phone" and is sooo serious about her conversation regarding her baby doll. She's even asked me to be quiet because she was talking to the doctor. She leaves and takes her baby to the hospital and comes back. Myra always tells me, "See, I told you I was coming back." I love how kids cope. :)

Journey to Healing

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