The Surgery … and the Infection: The 45 Day Adventure

The Surgery … and the Infection: The 45 Day Adventure

It looks like we’re finally going home … 45 days later. This is Ashley’s dad, David. It’s been an adventure, I can say that….

This’ll be a long blog post in spite of just hitting the highlights. And it’ll be from my perspective; I’m hopeful that Ashley can come back in future blog posts and fill in her perspective which’ll be more personal and more detailed. But this is my view of the past 45 days.

Tues, April 29, 2025 (Surgery Day) … After settling into our hotel 5 minutes from the hospital the previous weekend, Ashley, my wife, and I arrive early in the morning for the surgery. Dr. Henderson, Ashley’s neurosurgeon graced us prior to the surgery with a special moment of prayer; it was the highlight of our day so far. Second highlight comes when he came out after the surgery and said all was good. He noted that it was especially tricky because of Ashley’s tiny bones. “10 years ago I wouldn’t have been able to do that surgery,” he noted. His co-surgeon, Dr. Rosenbaum, was equally wonderful. 

The rest of the week Ashley spent in the hospital recuperating. It took a couple of days to get her pain management right and, as always you NEVER sleep in a hospital. I took the overnight shift in the hospital with Ash so my wife could sleep, then she handled the days so I could sleep some and work some (counselings sessions via Zoom). It was a tiring week for us all. 

Fri, May 2 (Home from the hospital) … We had to celebrate by getting ice cream and taking a (short, slow) walk in the park. Felt wonderful getting out in the fresh air and hopeful for the healing process to happen. Of note, Ash didn’t feel any symptom relief (no less headpain, definitely not less neck pain, etc.). The one thing I noticed was that she was able to speak more fluidly vs. saying 2-3 words at a time in a very, very slow speech pattern as before. This suggested better cognitive functioning to me. 

May 3-12 (Doing ok) … Ash was doing relatively well. Still in pain, of course, after surgery but was up and walking a couple of times a day (super slow and not far but still walking). I worked part-time, handling counseling sessions as best I could, and on Wed, Angela went back to San Antonio to work the final month of the school year. With her departure, things were certainly more challenging but manageable and we looked forward to getting the stitches out and heading home in about a week.

Mon, May 12-15 (Infection) … On Monday (13 days after surgery per protocol), Dr. Henderson took the stitches out; we were cleared to go home! On Tuesday two of the prior stitches spots had popped open. By Wednesday we returned to Dr. Henderson (as we noticed some staples hadn’t been removed from the surgery two weeks prior) and he didn’t like how those two stitches spots had opened up. On Thursday, those spots were oozing discharge (her pillow was wet with pus and she was not feeling well - feverish, chills, more intense headache, body ache, more nausea, etc.) and Dr. Henderson ordered us to go to the ER right away for a potential infection. (You do NOT want to get a bone infection in your spine.) We spent 7 hours in the ER and were eventually admitted to the hospital about 11:30 pm, ironically on the same floor we had left two weeks prior. 

Fri, May 16 (Surgery #2) ... Dr. Henderson reported that he was going to have to re-open the surgery site and do a “wash out” with strong antiseptic/antibiotics to thoroughly clean the site. And THEN we’d have to come BACK in 6 months and RE-DO the entire C1-C2 fusion procedure!!

Proud Dad Moment for me: I offered up a question, “If you’re washing out the site extraordinarily good to the point you’re sure you’ve gotten all of the infection out, couldn’t you replace the cadaver bond NOW with a new one so that we don’t have to open her back up all over again in 6 months??” While Dr. Henderson called this “highly irregular” he did consider it. And 30 minutes later said, “We’re likely taking your idea and using it.” I was thrilled! Made sense to me and I didn’t want my daughter to go through all of this pain and suffering and go home with NOTHING to show for it!

So he opened her up, did the “wash out”, and replaced the cadavar bone, then closed her back up with 2 “drains” in her neck to drain out any fluid, blood, etc. over the next 5 days, and put her on IV antibiotics. Ashley notes waking up from this surgery in extreme pain! She said it was infinitely worse than her initial surgery and she was screaming for more pain meds. Eventually they got her pain under control. 

The next seven days were some of the hardest of my life physically and psychologically, handling overnight duties in the hospital (making sure pain meds are being handled well … sometimes they were, sometimes they weren’t), then handling day time medical oversight duties (on one day 11 different medical personnel were in her room from 5 am-9 am and another 6 over the next few hours), and trying to keep Ashley’s spirits up as they were going downhill FAST. (She was sick of being in the hospital, sick of not having any progress/in fact going backwards, and her white blood cell count wasn’t going down; we were worrying that this may be very serious. In addition, we were planning on going home and now we were facing a very serious bone infection and increased pain. We were both sleep deprived and stressed.)

Mon, May 19 (Picc Line Struggles) … In order to be discharged, we needed a picc line to be placed in Ashley so that she could get IV antibiotics via my wife and I at the hotel and back in San Antonio, and to have weekly blood draws to monitor her white blood cell count and other important infection markers. The experienced bedside picc line vascular access nurse tried valiantly for an hour and a half to insert a picc line into Ash (fully conscious and with essentially no numbing in effect because lidocaine doesn’t numb people w EDS (Ehlers Danlos Syndrome) effectively because of how their bodies metabolize it; they need Bupivacaine (which this nurse was not authorized to use). So Ash was in a significant amount of pain, trying earnestly to make this happen so that she could be discharged. It didn’t work, as the nurse kept saying, “It’s like I’m hitting a wall.” (A little foreshadowing for you.) We were told, “We’ll do our best to get you into Interventional Radiology for a picc line insertion but it could be tomorrow, it could be Wednesday, it could be the end of the week. We don’t know.” Ash felt there was no end in sight and her mood started to plummet.

Tues, May 20 (Melt Down Mode) … By this point, Ashley’s composure had been pushed to the limit. She lost it. With no end in sight to this experience and with pain still an issue, she began crying almost uncontrollably. “I’ve got to get out of here! I can’t take this any longer!” Fortunately the nurse allowed us to walk outside to get a break from those same four walls (first sunshine and fresh air in 6 days) and Ash called her Mom, asking her to come back to help us out. She missed her dog. She missed her brothers. She missed her Mom. She was sick of being sick and in the hospital. 

Wed, May 21 (Finally a picc line) …  Either due to significant pressure I was putting on the medical staff for two days to get her into interventional radiology (IR) for what’s usually a ½ hour picc line placement so we could be discharged or due to something else, we finally were sent to IR. It took 2 ½ hours. 

Dr. Amadu (nice doctor) tried extensively to place her picc line in her left arm but couldn’t. He couldn’t place it in her right arm bc all of her veins had been used up. (She’d had a total of 26 blood draw sticks in 5 days.) The doctor asked if they had my permission to put a picc line in her jugular vein! (That freaked me out more than a bit but I consented.) Ultimately, Dr. Amadu was able to get the picc line inserted in her left arm and we were on our way to being discharged.

Before trying the jugular, Dr. Amadu did a venogram with contrast and learned that the reason the bedside picc line nurse and he had both “hit a wall” was because Ashley’s Superior Vena Cava (artery in her chest) is irregular. (In utero, we have two separate veins in this spot that then meld together to form one “superior vena cava”; Ashley’s is still separate.) With this knowledge, he was able to revise how he was placing the picc line and finally got it into a workable position near her heart.

Last step before discharge … the PA (Physician Associate) took the 5-day antiseptic dressing off of her neck wound only to find … that the wound was oozing … from the same spot in was when we came into the hospital in the first place.  UGH!  We were literally packed and ready to walk out the door. We were tired of being there; we were sure they were tired of us being there. But could we be discharged if the wound is still oozing and her white blood cell count was still high? Apparently the answer was “Yes” because the PA said, “You have the IV antibiotics (daptomycin) which is all we’d be giving you in the hospital. I’d rather you be home away from all of the germs in the hospital.” So we were discharged. (I was wondering if Dr. Henderson would say to me the next day when we saw him at his office, “Why did you let them discharge her??? Now we’ve just got to re-admit her to the hospital.”) But fortunately he didn’t, agreeing with the PA on her decision.

Thurs, May 22 (You’ve got to be kidding me) … Shortly after that Dr. Henderson appt, home health came by to give Ashley her first dose of IV daptomycin … and the picc line didn’t work (could barely get the medicine in and no blood return).  UGH!!  You’ve got to be kidding me! Slight panic. Ok, more than slight. And a good bit of fear. If she can’t get her IV antibiotics, how are we going to turn the tide of this white blood cell count/not get an infection in her bones?! 

At this point I was getting overwhelmed. I texted my wife, “I need you to come back to DC. This is getting very, very serious. The infection isn’t clearing up and that’s very scary. Between giving her pain meds, regular meds, food, laundry, walks, prescription runs, grocery runs, doctor appts, blood draws, being Ashley’s personal psychologist and cheerleader, and now adding an IV that has to be given daily via an extremely sterile method, this is a LOT! We need you to come back right away.” Fortunately the next day was Angela’s last day of the school year and she returned 2 days later.

Fri, May 23 (Back to the hospital … #3 for those of you who are counting) … If I’m tired of being at the hospital, you can only imagine how Ashley is feeling right about now, undergoing yet another medical procedure. Anxiety, PTSD, fearful for her future.

On this occasion Dr. Amadu attempted to put a tunnel picc line in her jugular but found yet another unusual thing about Ashley’s body; her jugular vein (big and fat on most of us) is tiny in Ashley; too thin and narrow for a picc line. “Could THIS be the reason she has significant headaches, brain fog, vision problems, etc.,” I wondered? “And, if so, why has no one looked at this in 14 years of hospital visits and doctor appts?” 

Dr. Amadu said he’d try to adjust her existing picc line in her left arm but “no promises that it will remain viable.” Ultimately, he pulled her picc line back a few centimeters and then stitched it into place. “It is tenuous at best,” he noted. We are not convinced it’ll last 2 days or 2 weeks, much less 6 weeks. When we asked what the back up plan would be, he suggested that the infectious disease doctor might switch her to pill antibiotics but noted that they tend to be less effective. 

Sun, May 25-31 (Mom’s back!) … Angela being back was a breath of fresh air! She was able to take on most of the cheerleader/friend role as well as medications, food, and laundry while I took a brief breather, then got back into helping Ash while also getting back into counseling some of my clients whom I had to put on hold for a couple of weeks. (I was truly grateful that each of my clients had been so understanding during this busy time as I kept having to reschedule time and again during this stressful period, something I almost never do.)

It was a BUSY week but a whole lot better with my wife here with us! Angela was able to take Ashley out more on some drives, occasional shopping, etc. Typically Ashley felt pretty miserable on most of these (nauseaus, tired, in pain) but she enjoyed getting out a bit. 

Highlight of the week: finding out her white blood cell count was FINALLY in the normal range! Thank the Lord!

Sun, June 1-7 (the final week, we hope) … This past week has been relatively stable … Ash in a good bit of pain still (neck, head, back, spine), nauseaus most of the day (nothing new from the past 14 years unfortunately), anxious/worried, tired. On Thursday, Dr. Henderson took this 2nd set of stitches out (leaving them in for an extra week per our request to allow extra time for the wounds to heal … EDS patients tend to heal slowly and Ashley is no exception) and we are hopeful that the stitches spots remain closed. 

You’ll recall that this is where things went downhill last time … just as we were planning on going home. So we are cautiously optimistic that, nearing Day 45 in our journey, we will be able to go home to San Antonio on Tuesday, June 10 … where we will continue this journey … IV antibiotics being carefully administered daily in an extremely sterile fashion by Angela and I for an additional several weeks until July 3, weekly IV dressing changes and blood draws by home health nurse, resuming typical at home medical things (doctor appts, medical trauma counseling, physical therapy) … and hopefully embark on a much needed journey of healing … to begin a new life in which she is hopefully in less pain, less fatigued, and able to function in life better … getting back to doing more of what Ashley loves and what makes Ashley, Ashley. We will see…. 

“Turn your eyes upon Jesus, 

Look full into his wonderful face.

And the things of this earth will look strangely dim,

In the light of His glory and grace.” 

> one of our favorite songs during these challenging times

ps-Angela & I gifted Ashley with a new Bible during her recovery as she has been using her children's Bible that she recieved during 3rd grade at Alamo Heights UMC during Children's Ministry Bible dedication-aka the same Bible for 20 years! We surprised her with it (meaningfully signed by her three brothers as well as Ang & I), as her children's Bible is missing entire books of The Bible, assorted chapters, etc. She won't be getting rid of her prior Bible, and all the meaningful notes, hilighted verses, etc but would LOVE for YOU, Team Ashley, to share some of your favorite and most meaningful Bible passages, verses and notes to journal to help her begin the process of filling in her new Bible with hope and encouragement as she begins this next step of this next chapter of her life. Please feel free to pass this message on to anyone and everyone! The more the merrier!

Surgery is Complete!

 This is David, Ashley’s Dad. Ashley’s C1-C2 fusion surgery was successful! Dr. Fraser Henderson said on Tuesday that it was extra challenging due to some structural issues regarding her spine but fortunately all went extremely well. He’s such a wonderful surgeon; knowing Ashley was a bit nervous prior to the surgery, he prayed with us just before going in! Then, my highlight of the day … Ashley broke out in a soft, quiet rendition of “Sanctuary” with Angela & I … just before they wheeled her in.

She was in quite a bit of pain following surgery, as anticipated, but she’s had to push through a LOT of things in life so this was no different. Dr. H wanted her up and walking immediately so within a few hours after surgery she was up and walking and has continued to do so 3-4 times per day! Dr. H wants her walking a mile within a few months!

As for results, it’s hard to tell so soon after surgery. While a few patients with diagnoses like Ashley who’ve had this surgery have experienced amazing results immediately after, for others the changes occur gradually. One aspect that has changed right away for her has been her ability to communicate thoughts at a normal pace vs. very, very slowly, suggesting she’s getting more normal blood flow to her brain. 

As of yesterday she’s been discharged from the hospital and we’re now in a local hotel for a couple of weeks recovering. Last night was rough; my wife and I managed her pain as best we could with the discharge meds but I think Ash was fearful that our arsenal was not going to be enough. Eventually we got through it but none of us got much sleep. Hoping the rest of this weekend and next week goes more smoothly.

We’ve been inundated with support. THANK YOU!!! We are so encouraged by everyone’s loving support and can’t imagine being loved better. Blessings to each one of you!

David

p.s. Want to cheer Ashley up? Feel free to text or message her; she loves hearing from people. (Just don’t expect a reply any time soon plz.) Want to add cute pics of your dogs, kids, or anything that’ll cheer her up & make her smile? Go for it, Team Ashley!

Ashley’s C1-C2 Fusion Surgery Coming Up!

This is David Roper, Ashley’s dad, writing to update everyone.

Two years ago a friend texted me, “I’ve heard of a surgery that one woman did that seemed to cure her POTS symptoms! I thought I’d let you know because she sounds a lot like your daughter, Ashley!” And the odyssey began. 

I was skeptical at first. “How can a surgery fix what Ashley has? Her connective tissue is just made poorly.” But my friend’s text led me to learn about Jennifer Brea, a woman with, amazingly, all the same rare diagnoses as Ashley … hypermobile Ehlers Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), Chronic Fatigue Syndrome (ME/CFS), Idiopathic Intracranial Hypertension (IIH), Atlanto-Axial Instability (AAI), Mast Cell Activation Disorder (MCAD), Tethered Spinal Cord, Gastroparesis … to name a few. Jennifer created an incredible documentary titled “Unrest” (available on YouTube) which documents her struggles with Chronic Fatigue Syndrome (and the numerous doctors that didn’t believe her and/or tried but had no answers). But one doctor saw her film and reached out to her saying, “I think I know what’s wrong with you. I think you have hEDS. And I do a surgery that might help you.” (You can read Jennifer Brea’s fascinating story here.)

Ultimately, this doctor explained what I have come to learn:

Tendons hold muscles to bones and ligaments hold bones to bones. What holds tendons and ligaments in place is “connective tissue.” In people with hEDS, their connective tissue becomes lax, not holding things in place very well. Our brains and skulls are very heavy and sit atop our spinal column, held in place by connective tissue, ligaments and tendons. Over time, as we turn our heads thousands of times a year (and potentially have some traumas from falls, sports, etc.) that connective tissue becomes increasingly lax. Over time, as that connective tissue gets more and more lax, some people who have hEDS experience their head gradually “settling” lower, compressing the top vertebrae (C1) into the second vertebrae (C2). However, there is a crucial artery and nerve that runs to/from the brain to the rest of the body that exits between C1 and C2. If C1 is being compressed into C2 (as in when they stand or sit up, they can experience significant problems as a result of diminished blood flow and nerve performance. (Ashley struggles with chronic headaches, migraines, “brain fog”, intracranial pressure, intermittent vision issues, significant fatigue, slow healing, gastrointestinal issues and pain, hot/cold sensitivity, difficulty with loud noise and bright lights, etc.)

Hence, a C1-C2 fusion surgery (in which they take 2 small bones from a cadaver and screw them onto the sides of C1-C2 to keep that space open the proper amount) can help some patients tremendously! Jeff Woods, a person who has had this surgery, lays this out beautifully in greater detail on his website. (His story is pretty remarkable, with him being in the hospital for four months and figuring out the cause for his problem but multiple doctors refused to read the medical journal articles he had highlighted right next to him on his bedside, explaining what he believed to be the solution … a C1-C2 fusion. His story and Jennifer Brea’s are similar to Ashley’s in so many ways … pain, struggles, some doctors trying, other doctors not believing, struggles to live life, etc. Remarkable to have found people who’ve had similar life experiences … and found something that actually helps!)

So, Ashley will have the C1-C2 fusion surgery on April 29, 2025 via Dr. Fraser Henderson in Maryland, the same neurosurgeon who handled her tethered spinal cord release surgery. Recovery will be hard for 3-6 months and may continue for another 6-12 months after that. 

Note that this is not a “cure” for her hEDS; you can’t “fix” your connective tissue. And there is much she’ll have to do following her surgery and recovery to maintain improvements (extensive PT, etc.). But she (and we) are hopeful that this surgery will significantly improve her quality of life and she can get back to loving on children, hanging out with friends, and engaging with peers in church and bible studies … things that she’s been increasingly unable to do. 

Yet she is a courageous, resilient young woman who continues to persevere and believes strongly in Isaiah 41:10 (“Fear not, for I am with you, for I am your God. I will strengthen you and help you.”). Your thoughts and prayers are much appreciated, and Ashley loves receiving your encouraging text messages! (Just don’t expect her to respond while she is preparing for surgery and healing.)  

Many blessings!

David

care about rare

 Today (February 28th) is Rare Disease Day! (I don’t feel like saying “Happy Rare Disease Day” is accurate because nothing about having a rare disease is “happy”)

The fact that when I type my diagnosis on my phone or computer, spell check says it’s a word spelled inaccurately-is enough of a reason for me to advocate. 

The fact that my parents & I receive messages, texts, calls, etc of friends and friends of friends allllllll the time who they themselves or someone they love/care/know about either has a) only been promoted to talk to a doctor about their medical condition because of my story/symptoms having similarities to theirs or b) have been diagnosed with any of my conditions and feel a little less isolated or have at least some comfort, peace and hope because they’ve seen/heard/read my story-is enough of a reason for me to advocate. 

The fact that I have been told by MULTIPLE medical professionals that “it’s all in your head” or “have you tried taking a warm bath”, often because they have never encountered, treated or even heard of any of my diagnosis or anyone “like me” and/or can’t wrap their heads around the fact that someone could live day in and day out in this amount of pain when you “look normal” or “you can’t know what real pain feels like, you’re too young”-is enough of a reason for me to advocate. 

The fact that the number of doctors who will even take on “a patient like me” is such a small, small number both nationwide & worldwide that are understandably overwhelmed by responsibility of having to all do it ALL-research, advocacy, treating patients & education, etc for the sheer number of us needing specialized & comprehensive care-is enough of a reason for me to advocate. 

The fact we’ve encountered multiple doctors offices who have told us “our doctors don’t see those kinds of patients anymore-they were too frustrating and depressing” (yeah? while imagine living it day in and day out thank you very much!)-is enough of a reason for me to advocate. 

The fact that research for my conditions is severely underfunded, under researched, under educated about and there’s no specfic protocol or treatment-is enough of a reason for me to advocate. 

The sheer number of complex, chronic & also rare comorbid conditions that come along with this root cause diagnosis, conditions that are also often rare and under researched with no specfic treatment protocol & no cure-is enough of a reason for me to advocate. 

The fact that my commitment to not letting my illness define me while sharing my story, while not letting it become my sole identity, when in fact my chronic illnesses are the LEAST interesting thing about me-is enough of a reason for me to advocate. 

The fact that I have to suffer day in and day out with the root cause of my poor health being a degenerative condition with no cure-is sure as heck a reason for me to advocate. 

My question to each of you is, will you join me? #CareAboutRare

Pretty in Pink

Ashley was released from the hospital after 6 nights on Tuesday afternoon. She was thrilled to change into her own hospital gown after leaving the ICU for the last night. The nurses actually came to move her to the regular room at 2:45 in the morning! David convinced them to wait until 5:00 am instead!

She has now settled in to a comfortable and quiet bedroom with a bathroom, downstairs in the basement at our friends' house. We are SO incredibly grateful to Kevin and Yihung for opening their home to us. Being in a home for an extended time is so much better than being in a hotel.

Her progress remains steady, and we are so grateful. The doctors have been pleased as well, and she will see Dr. Henderson on Monday. We anticipate he will release her to fly back home to San Antonio once she feels up to it. She is also experiencing some post-surgery nuisances, so she will be asking about those, too.

David flew home yesterday, and we miss him terribly. He has a way of being stedfast when needed most and of adding humor at the perfect time. Our friends also have an adorable yellow lab named Angel, and the two of them became fast friends. I have a feeling they are missing each other also.

Looking ahead, we ask for prayers for Ashley's continued smooth recovery and especially for the plane ride home. She will have to sit for several hours for that, so she needs to be in minimal pain for that journey.  Our three hour flight is non-stop, fortunately.

Thank you again for all of your support and prayers. The prayers definitely worked as so many pieces we were worried about fell into place, including all three boys being safe in Texas until David's return

.

surgery sidenotes #2

Ashley has asked me to post another update on her post-surgery status. 

She remains in the ICU due a pain medication that she is receiving via IV drip. The doctor wants her to wean off this pain medicine today so that she can be moved to a regular room tomorrow. At that time, he will have her take her regular pain medicine instead to make sure it is effective before checking out of the hospital most likely on Tuesday.

Overall, Ashley has done well through all of this. Her attitude has been wonderful, although she is regularly concerned about her pain being managed due to prior experiences. She has an appetite and has short conversations, yet she is not up for doing much else like watching sports (which is one of her passions), responding to social media, etc. She does love hearing us read messages we receive, however.

Moving forward, we would ask for prayers that her pain be managed well as we transition to our friends' home here in Maryland. Ashley's body does not process oral medications properly in general, and due to previous traumatic hospital visits, we are always concerned about her pain being managed.

Thank you again for your continued prayers and concern. Knowing others are praying and care so much makes all the difference in the world.

surgery sidenotes

Hello to everyone from Baltimore, Maryland! This is Ashley's mom updating her blog on Ashley's behalf. Today is Thursday, January 23. Ashley's spinal surgery was yesterday, and we were thrilled when Dr. Henderson beautifully prayed for Ashley with all of us right beforehand.

Ashley's occult tethered cord surgery went "perfectly" according to the surgeons' reports yesterday. She was in surgery for about 3 hours and then spent a very long time in the recovery area. Due to one of the drugs that the doctor placed her on post-surgery, she is required to be in the ICU.  However, the ICU was full until about 10:00 pm that night, following her 7:30 am surgery time.

One of the surgeons, Dr. Henderson, mentioned that Ashley's spinal fluid pressure is high. While the normal range is from 0 to 5, hers was in the 20's. He indicated that this could be causing her constant headaches and frequent migraines as well as contributing to increased pain in her back. He started her on a medication to lower this pressure.

For today, Ashley will continue to stay on bed rest to protect the surgical site. She could be asked to walk to the bathroom tomorrow and might be moved to a step down unit in another room also. The doctors will make such decisions depending on how she responds to the surgery and on how well her pain is managed.

We are all so appreciative for all of your care and concern yesterday. None of us slept hardly the night before the surgery, so the messages throughout the day were so uplifting for all of us. David and I read each one to Ashley, and she kept asking to hear more of them.

In the coming days, we would ask that you continue to pray for Ashley's pain to be managed and for her body to heal sooner rather than later. We know there is power in prayer and are grateful for each and every one of them as we are grateful for each and everyone one of you.