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.