Guillain-Barré Syndrome {part 3: rehabilitation}

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Life has been carrying on around here this past month and a half. Not quite back to normal, but carrying on none the less. This blog left off on March 3rd, the night before I drove from Huntington to Columbus to trade places with Brent at Children’s Hospital where our six year old was recovering from a second acute case of Guillain-Barré Syndrome. I didn’t return home until he was discharge a month later. The first blog post, describing Avery’s decline and initial hospitalization is here, and the second post indicating the second half of his ups and downs, then transition to rehabilitation is here, if you wanted to read things in chronological order.

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Avery’s best smile at the height of his facial paralysis. His best friend Parker came over for a visit several times.

This post reviews Avery’s rehabilitation, a very important step in GBS care and recovery. Rehab began while Avery was on the neurology unit. Physical (PT), occupational (OT), massage (MT), and recreational therapists (TR) visited his room every week day to begin the process of moving his limbs, engaging his muscles, and working with us as a team to accelerate his healing (emotional and physical). We had visits from social workers, psychologists and music therapists. Child life specialists were involved in teaching Avery to swallow pills, providing activities and recreation and documenting his hospital stay with photos. Every aspect of our needs were met by the hospital staff and volunteers. Nursing and patient care staff were our backbone. We utilized the family resource center, giftshop, various eateries, outside gardens and park, book carts, art carts, magic shows, bingo nights, shuttle services to the grocery, and so much more. We are forever grateful.

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PT in the gym during a time where he was still uncoordinated, weak and pain filled. At this point it was also difficult to get him into clothing. We were carrying him delicately anywhere he needed to go and helping with all his meals.

We moved units (off neuro and on to rehab) February 14th to find the actual rehabilitation of Avery was very slow and frustrating. He was still experiencing a tremendous amount of pain, especially when asked to move any part of his body. He was sensitive to touch. There was all the chaos of his autonomic systems dis-functioning. Then he was challenged to three 30 minute sessions of PT, three 30 minutes sessions of OT, two 30 minute sessions of recreation, a 30 minute massage, and a half hour of school with an on-site teacher, each week day, for six weeks. He had NIFs/VCs between every 2 hours to every 6 hours to eventually twice a day before being dismissed altogether. He had speech therapy for his swallowing for the first half of his rehab stay everyday. Once a week there was music therapy, twice a week there were group activities set up by child life on the unit, most evenings there was an organized craft/game/activity available to all patients in the hospital, and once a week Howard, a volunteer, stopped by our room to hang out and chat, do magic, and listen to Avery’s growing repertoire of jokes (thanks to those who sent in comedy material!). We opened care packages (thank you so much), built toys, played games, ate three square meals, decorated our room, made friends on the unit, watched the snow fall, FaceTimed with family, and speculated about the outcomes of “scientific studies.”

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Being fit for AFOs, aka “doing science!”
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Tape, foam and rubber tools were added to utensils, pencils and tooth brushes to aid his grip.
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Music therapy. Fun right? Don’t get GBS just so you can do awesome things like this too. Volunteer with your local organizations, it’s much more rewarding.

Three weeks in, we changed his medications a bit more. The doctors weaned him from neurontine and introduced Lyrica. We doubled his Elavile dose. All along we were still treating for high blood pressure, acid reflux and eventually congestion (cold/allergy related). It appeared the changes in medication improved his sleep and reduced his pain significantly. His progression in rehab made leaps and bounds.

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Writing a letter to his siblings about the snow fall we received.
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Avery spent Valentines, St Patrick’s Day and Easter in the hospital. Thanks to some special care packages, he had jokes, decorations and activities for them all. We don’t make a big deal of holidays at home, but in the hospital, every thing was a call for celebration.

Avery worked hard, even when he didn’t want to. When something was painful, he created his own motto of “it hurts, but it helps.” He self challenged. When asked to do 10 reps, he’d say, let’s do 20. If he made it 50ft in his gait trainer one day, he’d try for 150 the next. This isn’t to say he was all smiles about it. He did an extraordinarily good job of throwing fits, having tantrums and being violently belligerent. The entire rehab team worked with us to eliminate “yes/no” questioning, because he always said no. They helped us create reward systems that proved motivating, then eventually were not needed. They cheered him on for every little success. He was made to feel important and special, because he was. Every patient was. We all rooted for each other.

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Yoga.

Avery observed the strengths and weaknesses of his unit-mates. He’d comment on their healing and progress and they on his. The other parents and patients would occasionally stop by with a treat or invitation to join them for dinner. There was a lot of camaraderie in rehab, a unit that seemed appropriately named Determination Way.

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Playing I-spy in the magic forest with a unit mate.
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PT and TR planned a field trip to COSI to trial his abilities in an environment outside the hospital. We had a fab-lab-tastic great time.

Sometime during our stay…the date tucked away in my journal, Avery had a second MRI, of his lower lumbar spine. The results showed he still had peripheral nerve damage, but the damage was improved since the first MRI. This helped identify the incontinence issue and let us know he was remylinating. We are still looking forward to a second EMG/nerve conduction study scheduled for May 21. All these tests help us to understand the variant of GBS, the extent of the damage/recovery, and determine/rule out a diagnosis of a chronic condition.

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TR took advantage of the six inches of snow for snow ball fights, snow angles and some snow writing.
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Rehab Rocks! It really, really does.

April 4, 2013, Avery graduated from rehab. There were cupcakes (he made them in OT), a large gathering of staff and patients, our family, reading of praises given by therapists, nurses and administration, gifts, jokes, and a lot of hugs.

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Cupcake making during OT.

I, personally, was concerned they were going to have to pry me from the hospital. I felt like I needed their help, their companionship, the lighter burden of everyday care. How were we going to transition to a home-life with four children, one recovering from GBS? Avery was going home with AFO braces, a reverse walker and a wheel chair. He could walk with the previously mentioned assistance, and do all his activities of daily living. He was ready to reduce his therapies to a less frequent outpatient basis. We were all going home a little more anxious, relieved by his rapid progress during the final three weeks of our stay, and happy we could finally sleep under the same roof.

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Obligatory “animal” photo at the hospital. These creatures were all over the place. This was taken before we left Children’s for the last time.
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Home, putting on his own socks and AFOs.
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Back to school. We were able to find three different ways to transport his walker, continuing our bike commute fun.

There was so much happening, this post can’t possibly cover it all. We did some updates on our Facebook page (you should follow along, we have a lot of fun there) and there were some through the care calendar (139535, code 4009). We are working on a video of his stay in rehab…but you all know how extremely efficient and quickly we work around here, so please don’t lay any race day bets on this family.

We’d like to thank everyone again, as often as possible. So many people sent gift cards (for hospital purchases such as food, prescriptions, medial bills), care packages (you all are so generous and thoughtful), and meals (wow, I need to hire you to cook for us regularly) to either our home or the hospital. We had a lot of help with child care in West Virginia and with transportation of children. We had near strangers, take our daughter for a week and then some and shuttle her around to practice and school and the like. Friends came over to clean the house, care for the cats, and work on our malfunctioning oven. We had folks deliver frozen pancakes to make for easy breakfasts, and deliver groceries which they often pay for themselves. All of these things were not only valuable to us in term of time saved so we could be where we needed to be, but also in dollars. We were able to make the many trips back and forth to Columbus, pay the minimum suggested donation at the Ronald McDonald House for our weeks of stay (we even had a donation in our name made to the RMH), and repair our van when it started acting up, because you fed us, and supported us along the way. Students at Marshall hosted a benefit concert and raised some cash for our travels. A second group of students put together a gaming marathon and purchased Avery an Xbox Kinects system to aid in his therapies at home (more on that later).

So as we get our bearings together again, wading through outpatient therapies, bills, and followup visits, we are comforted and aided by everyone around us. Near and far. Thank you.

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3 thoughts on “Guillain-Barré Syndrome {part 3: rehabilitation}”

  1. So glad you are all home. You are all so strong and doing such a great job! You are all always in our thoughts and hearts. You now need to do a post about how having a cargo bike with Avery is even better of an option for a family bike. It looks like it’s working out great to me :)

  2. We are so glad you are all home again! I look forward to more chats at your kitchen table. I missed your crazy family while you were split up to cover all the care. Welcome back!

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