It’s June 2013. June. This entire year has been lost to a void and yet filled to the brim with many-many experiences. At some point we need to stop blogging about Avery’s GBS, but it has consumed us. Everything we do all week long is in some way related to his recovery. Every time I leave my house, it is for him. The conversations turn from every angle, back to Avery. There is nothing on our calendar for the remainder of the summer that isn’t for Avery. Therapy, baseball, appointments. It’s not that we aren’t doing anything else, but all other doings are happening organically, as they arise.
Yesterday we were treated to breakfast and a community bike ride that raised more than $2200 for Avery’s expenses. It was intense. We were greeted by so many well wishes and by the time I finished saying thank you and catching up with a few tables, I missed several others who finished mopping their syrupy plates and were on their way off for the weekend. We caught back up to some during the ride, where children corralled around Erick, our neighborhood ice cream tricyclists. The energy was incredibly positive. Laughter, that perfect weather we have been able to enjoy this late into spring, a community of strong leaders, proud riders, and friends.
There were several people behind the scenes making yesterday’s benefit events possible. Thank you Cara and Thomas, Stacy and Matt, Byron and Lynn, Linda and her kitchen posse, John, Jaye, Tom and Bill, Joel, and anyone else I didn’t know about, but deserve a lot of extra credit. Thank you. Thank you. Thank you.
To those who joined in the festivities, it was the best party I have every attended. Neighbors and friends. Colleagues and crew. School family and acquaintances. All dining or riding around town together. He-yah!
Speaking of parties, my 33 and 3/3rds birthday is approaching. We simply must celebrate. Hugs and high-fives for everyone!
Several of our friends and community members have worked together organizing two fundraisers to apply directly toward the medical expenses incurred during Avery’s GBS this year. There will be a pancake breakfast on Saturday morning at Our Lady of Fatima, followed by a bike ride at Ritter Park led by our Critical Mass organizer, Joel, and bicycle raffle drawing thanks to a donation from Huntington Cycle & Sport. The generousity of everyone ceases to amaze us. We are indebted in gratitute to everyone. Even if you haven’t said as much, I know you are thinking of us, I can feel it.
If you would like to participate tomorrow, June 8th, more information can be found below:
Saturday’s events follow two other fundraisers held while Avery was at Children’s Hospital. The first, a benefit concert at Marshall University was organized by Ella Clark and helped us with over $200 in transportation and lodging expenses. The second was a gaming marathon sponsored by the Marshall University gaming club that successfully raised enough money to present Avery with an Xbox Kinects system and several games to use as part of his home phsical and occupational therapy.
All of these compliment the many personal care packages, gift cards, meals, and child care provision provided by countless people while we were in the hospital. I think I have sent out 50 thank you cards to date, with so many more to go.
The feelings behind these gestures and sentiments fluctuate between embarrassment and heart pounding love. With so much need and travesty in the world all these people have chosen to spend their time and energy on us, on Avery, on our community. It’s inspiring and motivating and overwhelming. It’s also difficult to be on the receiving end of such gifts. Perhaps it’s just me, but I flush with embarrassment for being in this situation, some how feeling that perhaps a series of different choices would have avoided such hardships, hardships that in the “big picture” are nominal. Please know, as I have tried to convey with a lot of sincerity, that you may never know how much all of this touches us deeply and we are grateful. We hope we can continue to give back to you all with our work and our efforts within the community and amongst the world.
Avery is getting stronger every week. He continues 2.5hours of therapy twice a week at Milestones Physical Therapy in Hurricane, WV (30miles from our home). He gets to Challenger Baseball at the LL3 fields as often as we can take him. He does his home therapy as we can get it worked in, and he is enjoying a mostly typical summer break from school. Having missed almost half of Kindergarten didn’t set him back, thanks to having an onsite teacher at Children’s who worked with our school, his tutors, and his own resolve to stay on top of his work. Avery is walking with the help of his AFOs, and has some time out of them as well. He has some foot-drop issues, but we feel those things are slowly resolving as well. The EMG showed continued signal delay in his nerves at the end of May but ruled out his condition as being chronic. He is continuing to take 50mg of Lyrica twice a day for nerve pain.
We tell our children that we won’t give them a hand unless they are showing effort to help themselves. It’s not a hard and fast philosophy, but it works for many scenarios. I wanted to let you know some of the things we are doing to help ourselves through this year financially. Our emotional and physical efforts are another story.
To start, Brent took on a summer job with a company as a contract employee. His chair also helped him secure his summer class at Marshall, which pays above his regular teaching position. We also applied for financial aid at the hospital and other medical facilities that offered it. We are still waiting to hear back. We set up payment plans where we could and double check every EOB with every bill and call back to our insurance if we are in doubt about the coverage provided (or not provided). It’s messy, but overall our health care insurance has picked up a substantial portion of our costs. The Lyrica is only $150 month, they approved most of our Ohio doctors and stays as in-network, and they covered our wheel chair rental as well as other equipment costs so far. The tricky part is going to be when the fiscal year ends June 30th and we have to start over with our deductibles while continuing to go for follow ups and therapies. Yet, we did this in 2010, with a newborn, and we will do it again in 2013, with all of you at our side. Thank you.
Avery, our six year old, was admitted to Nationwide Children’s Hospital February 5 near midnight. He was met by a team of doctors, nurses and therapists and sent to the neurology unit. Without having my journal in front of me at this time, I estimate he spent another five days with intense pain, extremely high blood pressure and other very misaligned autonomic systems. The pain team was able to do their best, but cautious to using heavy narcotics which could cause respiratory suppression.
In order to confirm/deny the diagnosis of GBS, the doctors ordered an MRI of Avery’s spine. A couple days later, there was a nerve conduction study/EMG. Both tests confirmed inflammation of the nerves and disruptions in the nerve communication. The EMG also helped identify this as a second isolated case of GBS, not a flair up from the first case. This case presented very differently from his 2010 episode. In 2010 his motor neurons were heavily effected, in 2013 it was his sensory nerves, which led to the frightening pain.
Given all this data, the progression of the illness and the introduction of Bell’s Palsy on the left side of his face…and a slew of other symptoms, we accepted the GBS diagnosis and added to it the Miller-Fisher Variant. Following the week and half period of pain, which included two additional treatments of IVIG (first was at our home hospital), he was assessed for rehabilitation. He was slowly taken off many IV drugs, transitioning to oral, and monitored for stability with respiratory function. When we had gotten clearance from our insurance company (a story in itself), we were moved from neurology to the inpatient rehab unit at Children’s on February 14.
A couple days prior to the rehab move, Brent went home to Huntington with my sister and two of our other three children who came up to Columbus for several days. The hospital has a very strict, protective visitation policy during influenza season. The 2012-2013 winter was especially difficult for the flu, so children under 14 are not permitted on patient floors, and we can only have four visitors to his unit the entire duration of his stay. Those spots were taken by a couple in laws, my sister and a dear family friend (at Avery’s request), leaving my own parents, and other family unable to visit. This of course made it exceptionally difficult to have our children with us in Columbus, unlike the 2010 GBS case, where we felt we could be together more often during Avery’s hospitalization, despite having a new born.
We understand the restrictions, and if it wasn’t for the grace of Avery not being under any type of contact restriction, it would have been even more challenging. On the Sunday before they left town, Avery had been fitted for a wheel chair and granted 30 minutes to visit with everyone on the lobby level. This was his first transition out of bed, into an upright position. He was unable to do any of the moving himself, but once upright, with proper harnesses and belts, was able to remain so for short periods of time. His duration of chair time has gotten long with time.
Such a bitter sweet moment in our journey. Avery was finally able to be with us all, and they all had to leave. Thirty brief, precious minutes.
With Brent, my sister Shannon, and the three children in Huntington, and Avery and I transitioning to rehab in Columbus, there was a lot of texting, phone calls, email researching, and a little FaceTime. It was during all this time that people were filling countless needs on our CareCalendar (Id: 139535 Code: 4009). We simply could not function without the work of dozens of friends and community members. I am continuously surprised and impressed (when I really shouldn’t have been, b/c everyone is always so selfless and amazing).
Brent and I switched places the weekend of February 16th. It’s a 150 mile drive each way, without any interstates until you reach each city. The parking has been covered by the social worker, due to our long term stay, and free when we utilize the Ronald McDonald House across the street. We have three family/friends in the Columbus area who have come to our rescue with groceries, special clothing and activity/book requests for Avery, and some child care. This has made being with Avery, and caring for him around the clock, a manageable task. Our other needs, outside of the need for being together as a family, and desiring Avery to be healed, have all been met with love and efficiency. Thank you.
When I returned to the hospital February 18th at 8am, Brent immediately left for work. He managed to fit in a week of classes, then the family returned to Columbus together, utilizing the RMH once again. Brent, Shannon and the children returned home on Sunday night, February 24, then this weekend Brent and I made a swap once again. I leave for Columbus in a couple hours, Brent comes back to Huntington Monday morning. And back and forth we go.
During Avery’s stay in rehab he has developed new symptoms. He had something called a convergence insufficiency with his eyes. He became incontinent. The sensations in his limbs went from pain to feelings of intense tearful itching or sharp grains of sand between his toes. There was the feeling of things in his eyes, the sudden onset of cold sores. He lost the ability to move his ankles and toes completely. Many of these things would disappear, and some of them would reappear. Some remain gone. His vitals slowly became normal. With medication they have been able to bring his blood pressure down (to slightly above normal). He is taking three doses of neurontin everyday and a dose of elavil before bed.
The facial paralysis spread to both sides and has recently subsided. This affected his respiratory tests and his ability to swallow. The first barium swallow test showed aspiration on thin liquids so he was placed on a nectar thickened diet. A second test on Friday showed aspiration on nectar thicks and he was elevated to honey thickeners. This morning he was given a chest x-ray for wheezing that may have been caused by aspiration, but it was clear.
We are often, as you can imagine, asked how is Avery doing. Everyday has been so different from the one before it that it was difficult to say if he was better, worse or the same. We just told people he was different. We were also cautious to say he was better when in a couple hours he might not be. Since I have been home this weekend, Brent reports he is getting better. He is making progress in his therapies, as you will see in the following videos. His ability to write and control his hand was improving, his endurance is increasing, his attitude is brightening, he is sleeping for longer periods at night. Some of his symptoms are worse, like the swallowing, the return of incontinence, and no changes in strength. I don’t wish to downplay his progress or over represent it either. The information sharing is a delicate thing.
Check out these clips from this most current weekend. He was fitted for special ankle to calf braces on Friday, so he could stop using the knee stabilizers he was utilizing for the previous week. The clips show the very first “steps” and other firsts I wasn’t able to be present for. These are tremendous improvements and I do wish I had video of all he couldn’t do prior to this for comparison.
Late January 2010, our then three year old Avery began tripping over his own toes, then limping bi-laterally, then was unable to walk, then couldn’t lift his arms, and eventually too weak to raise his own head from his chest and shoulders. By the time we had a proper diagnosis, the syndrome had reached his respiratory system and he would be intubated (on a ventilator) for eight days, before strength and reflexes began to recover slowly. We spent two weeks in our local hospital’s pediatric ICU and ped-unit before transferring to Columbus for two weeks of rehabilitation. He left Nationwide Children’s with the ability walk and continued several months of outpatient rehab at home. We felt that we had a full recovery, minus a lingering nail biting habit. He also developed an intense personality (I’ve written before how aggressive he can be), but one we couldn’t determine if it was just his nature, the trauma aftermath of being a toddler and undergoing so much, or because of the intense amount of drugs he was subjected to, or was it a lingering GBS symptom?
That’s the nutshell. At the time we had a one month old Oliver. We had friends who jumped in and saved us everyday with food, packing lunches, bringing children home from school, therapeutic phone calls, breakfast deliveries at the hospital, grocery runs, child care, donations of extra breast milk, activities for the older children, out of town lodging, carpooling, visits, thoughts and prayers. We spent the next couple of years paying off the medical bills, holding our breath every late winter, marveling in what we endured as a family, with our community at our back, holding our hands.
There are a slew of details I am intentionally omitting at this time, but would be happy to discuss with anyone.
January 30, 2013 Avery, now six years old, said his legs were hurting that evening. Simple childhood complaint. January 31, he vomited twice that morning and we kept him home from school. By mid morning, we knew something was not right. I even called the school and asked his teacher to contact me so I could find out how he was behaving and moving the day before. She hadn’t noticed anything. Late that night Brent took him to the emergency room at the hospital over the hill, they walked there, down the retaining wall and into the department. They ran tests. Everything was clinically normal. Friday, they ran more tests, still nothing. Come Saturday, with the vomiting persistent, the pain waxing and waning, they discharged him from the pediatric floor with a diagnosis of transient synovitis(something we were told in 2010 as well). Instruction said to give him advil and follow up with our doctor on Monday.
Things did not improve over the remainder of the weekend. His pain intensified (I akin it to transitional labor pain). His vomiting continued. He lost the ability to walk, and diligently crawled to the toilet for all his needs. When he was able to sleep it was in 20 to 40 minute segments with 45 minutes of excruciating pain in between. Advil and Tylenol were ineffective. Nausea medication was minimally effective. We streamed movies and cartoons as often as he wanted to draw his attention away from his body.
Monday February 4th we were able to get into his pediatrician’s office. The doctor didn’t know what was going on. The symptoms and tests were not indicating GBS, but nor were they indicating anything else. More tests, this time looking for inflammation. Not once during all this did he has a fever or swelling, none. There were flu swabs, spinal taps, x-rays, CTscans, bloodwork. All showing a perfectly healthy six year old, who was obviously not healthy.
Mid Monday the pediatric neurologist came to see Avery. She tested his reflexes, determined it was another episode of GBS and put in the orders for another blood test looking for specific antibodies, to begin IVIG treatment, and to have us transferred to Nationwide Children’s Hospital, once again.
Every story has multiple versions and perspectives. While all of the above was going on, there was a flurry of activity at home to care for the other three children. My dad drove down in the middle of the night before. Friends were called to pick up children from school. I had never used my cell phone so much, and especially for making phone calls. Brent and I were running on anxiety, having taken turns at night, or splitting shifts with Avery. Avery looked like death. Dark eyes, rapid weight loss, scabby lips, howling in pain.
I kept very thorough notes. I wrote down the most insignificant complaint or observation, with the time and any extra thoughts. Brent added to it on his shift. It was copied and added to his records. We told our story to every medical student, nurse, resident, fellow, and attending, over and over again. Avery answered the same questions repeatedly, went through the same reflex and strength tests each time. He escaped through tv and slept in short episodes before pain surged through him.
A little after midnight on Tuesday February 5th, Brent and Avery arrived by ambulance at Children’s. I stayed behind to tie up loose ends, call my sister in from Cincinnati, rest insufficiently before heading to Columbus myself. Who could sleep at a time like this?
As it ended up, people I had only met once, or knew by association, or shared membership in activity groups would fill every need we had in order to be with Avery. My dad drove me to Columbus and dropped me off the moment my sister walked in the door to take over. She works nights from home, so many things still needed coverage while she slept during the day, but she was and continues to be able to handle evenings and be in the house while the children sleep.
Avery was greeted in Columbus by a huge team. Much story telling went on, another round of tests, leads were attached for monitors, pain and vomiting persisted. At this point it remained unclear if the GI issues were related or coincidental. It was also not certain we were dealing with GBS, given the tests up to this point were not indicating it was, and his symptoms were not as they were in 2010.
It is also at this point in the retelling that I am going to pause. I came home this weekend to spend time with our other three children, leaving Brent to care for Avery. They are waking up, so I am going to get back to them.
You are invited to follow us in more detail through our Care Calendar (Calendar ID : 139535, Security Code : 4009). My sister Shannon tries to compile texts, facebook updates, phone conversations, etc to make the journal updates. The actual calendar is how we are surviving. People every where are helping out in ways I have yet to acknowledge. Some share their experiences with hospital stays and how they made things “easier,” others have made simple “thinking of you” posts on our walls, or tweets, or emails. We have gotten cards, care packages and donations. Every one of them welcomed warmly and needed.
The above clip was one of the last times Avery walked. It’s not an exaggeration, I assure you. The clip below was how he got around as necessary after he was no longer able to hold his own weight. Many trips to the toilet. I never filmed when he was crying inconsolably or hallucinating, but after our 2010 episode where we had no documentation, I felt we needed something this time. Something to share with others who have had these experiences and are desperately searching for reasons their children are behaving so differently. I hope this doesn’t appear to be in bad judgement.
The clip above was after several viewings of KungFu Panda 2 (on the Children’s movie network). He had moments of shine coming through. The last clip below was an early physical and occupational therapy moment while on the neurological floor at Children’s. You can see he has some mobility in his upper body.