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Adam's Road to Recovery - AFM

$9,345 of $20,000 goal

Raised by 147 people in 11 months
Created August 20, 2018
Fundraising Team
on behalf of Bridget Williquette
32304000_1534944470436517_r.jpeg10/9/18 Edit: We are now a CDC confirmed case of Acute Flaccid Myelitis. He has now been hospitalized for 66 days.

My brother in law Adam and sister Bridget got married on July 21, 2018 in a gorgeous ceremony at South Shore Pavilion. A few days after the wedding, they went on a road trip, and both of them got sick on their trip with some kind of respiratory virus. Bridget's went away on its own, but Adam did not improve (we think because of an immunosuppressant that he takes for Crohn's Disease AND because of his severe asthma). He ended up in the ER on August 5. He could not breathe and became increasingly paralyzed while in the ER, including his chest, lungs, arms, throat (swallowing muscles), facial muscles, and neck. He was admitted to the Respiratory Intensive Care Unit the same day, and we later learned he was on life support (intubated and with a ventilator machine) to keep him alive.

After almost 100 different tests and a few diagnoses, the latest suspected cause is Acute Flaccid Myelitis. The CDC estimates that less than one in a million people in the United States will get AFM every year ( https://www.cdc.gov/acute-flaccid-myelitis/index.html) and only a few each year are adults. He was given a tracheostomy on 8/19 to help him breath more comfortably, but he is still on the ventilator. He is able to communicate by writing on paper, as his wrists and hands were (thankfully!) not affected much by the paralysis. He has been doing daily occupational and physical therapy and has made small gains to get more motion in his arm. He can slightly hold his head up on his own now, as well. They sent in tests for confirmation of his diagnosis and we are still waiting on the results. The paralysis may or may not improve with physical therapy. (A very small percent of people with AFM recover fully.)

Bridget was to start a new school two weeks ago, and her school has been understanding of her situation and told her to take as much time as she needs. People keep asking what they can do to help. We (friends and family) have been making sure Bridget has food delivered (thanks everyone!) & sending lots of happy thoughts/prayers Adam's way. Please keep reaching out to share your love! However, financial support is most helpful for the newlyweds at this time.

Adam has been in the ICU for 15 days and counting and will need intensive in-patient rehab for several months or even years. The financial burden put on them will be difficult. Even with insurance, the costs for this much intensive care in the ICU plus rehab will be expensive, and rehab is only covered for a limited number of days. Bridget will also have to take unpaid time off of work as a high school teacher to continue helping take care of him around the clock. The newlyweds also have a mortgage for their brand new house, and they are in the middle of renovating two of their houses, which Adam may no longer be able to do on his own.

The love these two share is incredible to witness. Bridget hasn't left Adam's side and has been sleeping next to him at the hospital every night. She helps him with everything and advocates for his care around the clock. They have become even more in sync and in love than they were before. Through his time here, Adam has also remained dedicated to Bridget, using his limited hand strength to write "did you get any sleep?" and "did you eat yet?" and "i love you."

If you are able to support them financially, please donate. If you are able to do other jobs or projects for them, please reach out. They are grateful for anything you can contribute!
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Our Acute Flaccid Myelitis journey. Share if you can.

Http://www.GoFundMe.com/AdamSpoerri

Day 176: MRICU, we missed you, we love you.

Last Wednesday the 16th, Post Acute Medical, the LTAC hospital we had been at since August 31, discharged Adam Spoerri (and me, still sleeping here every night) to a "Skilled Nursing Facility," or a long term nursing home that also has rehab. There are very few rehabs that take trachs, and this one was NOT on our list, but by the time the hospital was ready to discharge us, they had a bed open and the rehabs we liked did not.

I can barely describe the level of Hell that was Allis Care Center (though, as in most shitty places, the nurses, CNAs, and RTs were very nice to us). They did not have the very essential long-acting beta-agonist medicine, Brovana, that keeps Adam off the vent and from having breathing crises. They also did not have his clonazepam, which exacerbated his breathing issues. He went into distress in the evening from the late breathing treatment and unavailable anxiety meds (and the stress of the filth and jankiness that was this facility). He took his sleeping meds, trying to stave off the extreme effort breathing took, and woke up Thursday at 5:30 am still in crisis, hyperventilating and desating (oxygen saturation dropping) to the 80's (this facility also didn't have him on 24-hour plus-ox monitoring so they only spot checked him). I bagged him with the ambubag (that I brought with us from the last hospital, because this facility didn't have proper respiratory setup and had no bag in the room) and even after several rounds of this he could not catch his breath and had low oxygen. We made the decision to go to Aurora St. Luke's emergency department, bagging him all the way. We were there a short 14 hours but I could write a book about it. There is so much more.

His breathing at the ER got better after a treatment, but his oxygen saturation stayed low, so his pulmonologist decided to admit him into the MRICU (Medical Respiratory Intensive Care Unit, where we began our shitty journey on August 5th) for observation.

Since returning to the MRICU, Adam has done really well. He still gets short of breath sometimes when it gets close to his breathing treatment times, which his doctor thinks is just exhaustion from his crappy lungs and still-recovering muscles. He discussed rigging Adam up to a CPAP machine at night to give his lungs support and a break to see if that helps him breathe better during the day. That's still in the works.

In other news, Adam has been evaluated and supported by more doctors and specialists in a few days than he did in several months at the last hospital. I mention a problem in passing, someone hears me, puts in an order, and we are seen in hours. It's magical.

Friday Adam had a diaphragm sniff test to check for diaphragm paralysis, something I have wanted done since this began, as it is common with AFM patients. The diaphragm is controlled by C3-5, well inside Adam's spinal lesion range. The test came back showing a weak diaphragm, which confirms to me that his diaphragm was at one time completely paralyzed (when we used to take him off the vent we got NOTHING, no breaths on his own at all) but has begun to heal. This hospital system does not test for exact function of the diaphragm, but we know it is improving.

Our favorite neurologist nurse practitioner, Sharon, also stopped by (literally just for a visit until we got her added as a consult on this hospitalization), so we got neuro involved again. Sharon did a full exam to rate Adam's nerve function on a scale of 1-5 (read more here: http://www.neuroexam.com/neuroexam/content29.html) and found lots of hope in both his progress and in his reflexes on the muscles that aren't quite moving on their own yet. Sharon and Dr. Traynor, another one of our neurologists, recommend we see a neuro team at Froedert that specializes in Polio and Post Polio Syndrome and neuropathy, so they are getting the ball rolling there.

While Sharon hung out wth us (we love her), Adam had a bedside laryngoscope from Dr. Dankle to check his pharynx paralysis. Good news! Adam no longer had a "pool" of secretions in his trachea above the cuff and he was able to move and manipulate his pharynx and vocal cords (he could don't do this at his October appointment). I mentioned that Adam didn't qualify for Aurora's inpatient with a cuffed (balloon to stop secretions) trach and no current EMG, so low and behold, Dr. Dankle said he looked good enough to try the cuffless and neuro is ordering an EMG. The cuffless trach was scary to Adam who still has issues with secretions and suctioning, but if we try it and it is a disaster, we just switch back to the cuffed one. So, over the weekend we deflated Adam's cuff to see how he would do. More suction than usual, but not completely unmanageable.

Our neurologist will also do her share to get us into the inpatient rehab by describing how aggressive therapy is the only treatment for AFM. We currently have a referral for an evaluation by the inpatient rehab, so send happy vibes.

When OT was here, WE MERELY MENTIONED that his shoulder sags put of the socket and they ordered an appointment with an ortho doc to check it and order a Hemi Sling. Why did this take so long?! We also mentioned other spine and bone issues (scoliosis, bone protrusion on side of neck, others), so we are being referred to a spine doc next.

We also have been looking into nerve transfers. Dr. Seruya (Hi, Mitch!) in L.A., Dr. Amy Moore in St. Louis, and Dr. Spinner at Mayo Clinic are possibilities. We are considering this for Adam's left arm, which hasn't made much progress.

So this morning, Dr. Dankle traded out Adam's Trach for a cuffless. The swap went well and after a few hours of observation the secretions were manageable, so we were moved off of the ICU floor up to 11S, a Trach and, conveniently, ortho floor. While it was sad to say goodbye again to MRICU, we aren't far, and this floor has awesome nurses, too.

Back to work tomorrow. I know he's in good hands, and his Aunt Paula stays with him when I'm gone. I just want to be here 24/7!

I can't believe this week long journey at our favorite facility getting the best care possible literally began with a 15-hour stint at a crusty ass nursing home where Adam told me, "jokingly," "Just go home and let me die here."
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By far my favorite update so far! He's been hard at work while Bridget is at school. Adam's determination is inspiring. Keep it up Adam! Show AFM who's boss!


ttp://www.GoFundMe.com/AdamSpoerri

Goodbye Day 110, hello Day 111: Still hospitalized. Lots to update because we've seen a huge increase in muscle progress in the last few weeks.

Since I have been back at work for the last three and a half weeks, I haven't seen Adam's physical therapy at all, as it happens during the day. I was concerned that his shoulders hadn't made any progress, since he couldn't lift his arm at the shoulder but has been able to shrug it for some time now. I worried that's all we'd get and that we would have to look into a nerve transfer to gain mobility back in his arms, as is typical with AFM.

It looks like Adam was just trying to show off and saved all his progress for me during my Thanksgiving break, because HELLO MUSCLE GAINS!

The other day he was sitting up and scratching his leg. He kept motioning to me and looking down at his leg. I kept asking him if he wanted lotion or something. He just kept looking at me crazy. Finally he told me, "I don't think I could do that last week." Sure enough, he was pushing his arm forward and backward AT THE SHOULDER. He has never done that. Now it's moving ALL OVER THE DAMN PLACE. He's not lifting the arm at the shoulder yet, but it's scooting forward and backward and out to the sides while his bicep is flexed.

Then I saw a few days of his PT. He practiced moving his arms while resting on a yoga ball. He did his FIRST ever bending over exercises, picking up plastic cups off the ground. (A month ago he couldn't bend at the waist at all, or he'd fall over.)

He also did some neck exercises with PT. Until this week, he could not save his head from falling backwards and had nowhere NEAR the neck control shown in the video and photo below.

Adam's left shoulder is subluxed from the weight of his arm and the lack of muscles to hold it in place. Typically, that arm is extremely painful if you let it hang without someone holding it or his arm stabilizer on. This week he's noticed less pain in the shoulder and the ability to hold the arm himself with his other hand and go for walks.

Speaking of walks, I watched him, with no walker, go up and down the hospital hallway with only the arm stabilizer kicking a ball with PT. He kept his balance the whole time and could raise both feet to kick. Previously he would have needed to hold the walker or someone holding him to do this and he would lose his balance a lot, especially when raising the less stable foot. Before that, he was just taking walks while leaning on the much more supportive Eva Walker, which let him lean on it as he walked. Now we're not even using the regular walker. PROGRESS! Oh man!!!

The photo of him walking around his room in his gorgeous yellow gown is a new experience, too. Adam is always hooked up to some kinds of cords, wires, or tubes. This week PT and RT gave us the go ahead to occasionally disconnect from oxygen, food, and pulseox on our own to get some freedom to take care of business. When I disconnected him for the first time tonight, he took off trotting around the whole hospital room like a giddy little kid, running away from me, making a break for the room door, completely happy to be free of all that crap! I'm so excited for that little bit of freedom. It gave us the opportunity to take this happy selfie together!

Breathing, our biggest struggle, has been going OK. He is off the vent 19 hours a day and goes back on for only 5 hours, from 4 am to 9 am ish. As long as he gets regular breathing treatments without delay, he doesn't have major issues. However, he still coughs up some pretty chunky phlegm that sometimes causes his trach to block. Just tonight I had to rush to suction one out that had his lips going a bit blue. Sometimes his cannula clogs up and requires a quick change, too, or he'll desat. It's no less scary the more it happens.

New in Adam's world: ORANGE SHERBET! Speech therapy has been feeding him ice cubes daily to practice swallowing. He was never confident that stuff he swallowed went where it was supposed to go. He feared it was all going down in his vocal chords above the trach cuff (balloon). But the ice cubes have been going well, so we moved up in the world. The last few days, he's gotten to try swallowing some sherbet, which he described as VERY sugary. He only gets a few little bites, but he gets it down. Then, half an hour later, he tastes/feels some coming back up, so swallowing isn't perfect, but he is NOT aspirating it, which means his swallowing functions are probably working and it's not going in his lungs. Now that he can hold his head up, Speech will likely do a swallow study to see those throat muscles in action.

Mood wise, he had some rough days especially before the holiday, but we had a great snuggly Thanksgiving. I love the bonus days off work, and we can't stop looking at each other. We are just so happy to be together! I can't even explain how much love I have for him. It's otherworldly. It's unfathomable. Sometimes I don't believe it myself. It's like my whole life exists solely to love him without boundary.

We had some stories go national and then go viral, and we have requests for two more interviews, one with a website and another with a news station (a follow up). The CDC is stepping up. We see more kids with AFM join our parents support group every week. We still have good days and bad. AFM sucks, but our support system rocks.
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Day 92: Today was our three month "crapiversary," as the AFM Fam calls it. I spent the early hours at work crying at my desk. A good hug from my wonderful and supportive coteacher fixed that! A few people have asked for updates, so here they are!

Our longest day off the vent was 34.5 hours. We have done a few 24+ hour days since then, but the longer the day the longer the recovery takes. He has had some mucus plugs that causes him to desat (lose oxygen, but he hasn't gone blue again), and I know being off the vent probably causes that because his lungs don't get puffed up with positive pressure, evicting all the gunk.

We saw an ENT doctor to evaluate his swallowing and breathing. He did a scope and determined that Adam's soft tissue above the trachea (pharynx) was collapsed and closed off, so there is no point right now in lowering the cuff or trying the Passy Muir valve because he simply cannot get air up. Too paralyzed. Adam had no problem with that news! He hates the cuff and PMV. He also said the swallowing is hard to determine because of the state of the pharynx and the cuff up, but that the increased gagging is actually a good sign because it means some throat reflexes are coming back.

Left arm has been getting hella strong. He barely needs support as he pulls and pushes now. Also, today while he was sitting up, I watched one side of his back muscles twitch as he tried to engage his scapula! He is able to sit up much straighter, too, which is good news for those shoulders and core muscles. He continues to do daily walks, physical therapy in the gym upstairs, and e-stim.

We are participating in two AFM research studies, one with Johns Hopkins and the other with the Transverse Myelitis Foundation and Dr. Greenberg, an expert in AFM from University of Texas. We have phone interviews for both this week, and then one is a cheek swab and the other is a blood draw.

Look out for an interview with us and two other WI AFM families in the Milwaukee Journal Sentinal soon. They are coming this week to take photos, and the article should be out in the next week or two, I think. Cut us out and put us in your scrap book!

We had a big last week with visitors and distractions and interviews, and we have more of the same this week.

I've had a great return to work and love my new students, even though it's tough to be away. His aunt has been a godsend staying with him daily while she works from the hospital. Other family and friends and coworkers have been incredibly amazing keeping my snack pile stocked and bringing hot meals. If you know how much Adam cares about me, you should know that keeping me fed makes him happy. :) He loves watching me get excited about a good snack!

We try to stay positive. Our favorite thing to chant when we are in a bad mood is, "I have fucking polio!" "Holy shit, I have fucking polio." "That's because I have fucking polio!" It really suits any occasion.
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$9,345 of $20,000 goal

Raised by 147 people in 11 months
Created August 20, 2018
Fundraising Team
on behalf of Bridget Williquette
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