A lot has happened since I last updated.  I really need to start writing smaller snippets more often.  I get stuck between I want this all chronicalized and sometimes I don't have the energy to write.  So this is again long - sorry.

The day Alyssa was sent home from the hospital from her bout with pancreatitis back in March, she was still in a tremendous deal of pain.  Though she had struggled with managing her pain throughout the night while she was on IV pain meds, they did not feel comfortable giving her any pain meds to go home on.  Her lipase numbers were starting to decrease, so they reasoned that she should no longer have any pain. This was at Pella - the small community hospital by her home at school.  

That night, she was still struggling to manage her pain, and she noticed she had blood in her urine, so I encouraged her to just go ahead and go back to University of Iowa, where she's gotten great care before.  A sweet friend drove her the 90 mins to Iowa City and stayed with her in the Emergency Room since we were still in South Carolina.  They reran her labs in the ER and Alyssa's Lipase numbers were back to normal, indicating her pancreatitis was resolved.  They also did a urine culture and though her urine did have a lot of blood in it (the urine was pink in color), no infection was found.  The ER Dr. had a firm discussion with her about drug seeking and sent her home.  

At this point, Alyssa was miserable.  She was still hurting.  She was exhausted and she felt completely defeated.  This week had also been the 3rd week she was hospitalized and missed school this semester.  She kept pushing herself to keep getting up and going back to school.  Get up and study.  Get up and go to work.  Get up and do the things.  But her body wasn't cooperating with what her mind wanted her to do and things weren't getting better. It was at this point she came to the realization she needed to come home.

Alyssa took a medical withdrawal from Drake so she could come home and focus solely on getting better.  This was a heart wrenching decision for her.  It meant she was giving up school, her job and her apartment - all the things that gave her independence.  It was a hard call to make, but it was also the right call to make.  

Alyssa moved home that next week and got right into seeing her doctors.  We were able to get a quick appointment with the pain clinic.  The pancreatic pain was subsiding at this point, but it put her chronic abdominal pain into a bit of a flare.  The adjusted some meds and that has been doing a lot better.  She will also be getting a plexus nerve TAP block in the coming weeks to help with that.  

Alyssa started seeing outpatient Occupational Therapy (OT) and Physical Therapy (PT) on a weekly basis.  The physical therapist was recommended by a friend and works specifically with patients with Ehlers Danlos Syndrome (Hypermobility) and Dysautonomia. The occupational therapist is part of the team from Northshore, recommended by Dr. Kinkaid.  As a bedside nurse, I always saw the side of OT that was about making sure patients could perform self care, small motor skills etc.  But I have been amazed to see it goes so far beyond all that.  Perhaps Alyssa will write about it sometime because it is fascinating to see all the things they do.  One of the things I'm excited about (as her mom) is seeing how they help with energy conservation.  Overall, I feel like long term OT and PT could be game changers that offer strategies for navigating daily life.  

Energy conservation is still a big struggle.  Alyssa gets stuck in what they call the boom and bust cycle.  She will have a burst of energy (which looks basically like our normal, daily life) for a short period of time and then can be completely wiped out for the rest of the day or days after.  I know it's super frustrating and something she'd love to even out. 

Fast forwarding to this weekend... On Friday Morning, Alyssa woke up feeling unwell.  Her vision was wonky, which happens from time to time, and she was extremely nauseous.  She ended up vomiting that morning, but then things settled a little for her.  That afternoon, I left for Michigan with Tess and Sarah Kate for Kate's volleyball tournament.  On our way up, I get a FaceTime call from Alyssa that her GJ tube had flipped again - likely when she was vomiting.  She was going to need to go back to the hospital to get it replaced.  Unfortunately, it was a Friday and the procedure she needed was done by Interventional Radiology (IR), who wouldn't be back in until Monday.  So she wasn't in a huge hurry to get there, yet she knew she was already running dry (she is chronically dehydrated) and not feeling well, so she couldn't put it off until Monday.

Alyssa finally drove into NorthShore Hospital, Evanston, later that evening.  Dan and Blake had both offered to drive her there but she thought she could handle this one.  It should have been a straight forward, "yep your tube is dislodged", sort of thing.  At 10:15, she texted that she arrived and was super dizzy.  Her next text said "I really don't feel good."  I was just encouraging her "Hang in there, youre at the right place" etc.  She followed that text by saying "I'm having a hard time staying awake." Ok.  Well, we know that waiting room takes hours.  Go ahead and take a nap.  I was going to sleep myself as we had to be up early for Kate's tournament the next day.  

At 2:20 (Chicago time), I got a call from a Dr. at NorthShore Hospital saying they found Alyssa and were wondering why she was there? I asked "can't she tell you?" and was then told that she was unresponsive.  I didn't get into it at the time because it wasn't what mattered at the time, but I'll pause here to say there is an opportunity for change in protocol.  Alyssa arrived at 10:15.  She was triaged, so they should have known why she was there.  In triage, they decide on where you fall in terms of acuity.  A flipped tube isn't an emergent situation (there's just not another option right now other than to go through the ER) so Aly gets to wait longer.  However, her watch showed that she "fell asleep" around 11:00 or a little after.  Her notes say they found her slumped over and unresponsive.  So she had potentially been slumped over for 3 hours? Part of me really gets it.  We've been in enough emergency rooms to understand how it goes and how long things take.  People fall asleep waiting in there all the time.  It doesn't constitute an emergency.  Alyssa was unresponsive but her vitals were stable.  She was ultimately ok. But what if that wasn't the case?   What if she was slumped over and her heart had stopped as she was sitting there in the ER? And noone checked on her in 3 hours?  Seems like a significant safety/liabitlity issue to me and something for any hospital to be cognizant of.  (Of note, the best process we've seen was at St. Mary's hospital at Mayo.  While it was a long wait in the waiting room, they had techs stationed in the waiting room who did pt vitals every x hours and who drew any blood for needed labs while they were waiting.  It was a well oiled machine that made a lot of sense.)

Anyway, they admitted Alyssa and she remained unresponsive through the night.  Dan had the boys at home and I was in Michigan with the girls.  I got Kate to her tournament early in the morning and handed her off to a teammates family and Tess and I trekked back to Evanston.  When got there about 9:45,  Alyssa was originally still very groggy but she had woken up and was starting to participate in conversations a little more. 

Prior to our arrival, they had consulted with their on call neurologist to receive orders for an EEG to check for seizure activities.  (Was she possibly postictal?)  The neurologist examined her while she was still unresponsive.  Her exam was mostly unremarkable.  They did not do an EEG but did do a CT scan of the brain, which was also unremarkable.  This is when the neurologist started combing through all her notes. Her notes are a mess of opinions all over the board, and many not helpful - especially the ones from her stay in Huntley this last December. 

He came to the conclusion that Alyssa's workup never supported a POTs diagnosis, her GI studies ( a year ago) did not support the degree of symptoms she has been experiencing, this is a psychological issue and she likely has a severe eating disorder. He discontinued the medications she was put on by her own neurologist (Dr. Kincaid) and her Pain Specialist and there is no indication for her GJ tube.  Despite these HUGE claims, noone had any discussion of this analysis with us.  Alyssa has learned that she needs to regularly read her medical notes to keep up on what is going on, so she found this in her note that afternoon.  

Prior to reading this, I had talked with the hospitalist and asked her to please contact Alyssa's neurologist, Dr. Kincaid.  Dr. Kincaid is no longer a part of NorthShore, but she is a central part of Alyssa's care team and has been following her very closely since December.  I had already given the nurses her cell number earlier in the day and they assured me they would pass it along.  The resident hospitalist also assured me she had her number and would call.  After seeing the note in Alyssa's chart from the neurologist on call, I reached out to Dr. Kincaid, who confirmed that they indeed had not reached out to her.

I had several in depth conversations with Dr. Kincaid over the weekend.  She was able to explain some of the "politics" behind what was going on that had nothing to do with Alyssa.  I wont go into all that here, but do understand that some of this is likely bigger than Alyssa's situation.  She passionately talked about the medical gaslighting that goes on, especially when it comes to women. An interesting note is that we are seeing a large number of individuals struggle with autonomic dysfunction as a presumed result of long covid.  There are many studies looking at this link.  According to Dr. Kincaid, there is also the camp out there that is saying long covid itself is just a psychological issue and not an actual thing.  It's very messy so if you struggle with this, just be aware.  Most importantly, I was given suggestions for ways to handle the situation.  While it is appropriate for the hospital to consult with her, since she is part of Alyssa's care team AND we requested it, she knew they didn't technically have to since she wasn't part of that health system anymore.  She also knew this particular neurologist would definitely choose not to.  But Dr. Dickerson, Alyssa's pain doctor, is part of NorthShore and if we request the pain clinic be on board, they must accomodate that.  Dr. Kincaid contacted Dr. Dickerson herself to let him know what was going on.  Ultimately, it was not up to this on call neurologist to discontinue any of Alyssa's medications.  It was unlikely they had anything to do with her Altered Mental Status and she is under a physician's care who is available to make those decisions.  

The next morning (Sunday), a new hospitalist was assigned Alyssa's care and came in to talk with us.  We had an extensive conversation with her, bringing up the note written by the neurologist the previous day.  She was friendly, but started out adamant that there was no need to talk with Dr. Kincaid as she couldn't give any orders anyway.  She said Alyssa's case is very complex and it's hard to come up with answers.  Alyssa looked at her and said a version of "I understand that, but Dr. Kincaid has been working with me and HAS been able to provided some insight and answers, so if you would talk with her, you might gain some more clarity." By the end of that conversation, that hospitalist promised to call Dr. Kincaid and took her cell phone number from me again.  During this conversation, I also talked to the hospitalist about everyone's eagerness to write off Alyssa as having an eating disorder or everything being psychological without ever evaluating her psychologically.  They have never spoken with her counselor.  Never had her specifically evaluated for an eating disorder or psychological issue.  Never anything.  They just throw out those words amongst themselves and use it as an excuse to write her off.  At this time, Alyssa requested to talk with someone from psych during her stay to hopefully give more clarity on the issue.

Meanwhile, Alyssa was in a lot of pain on Sunday due to her occipital neuralgia.  This is what she had always thought was migraines and can become debilitating.  The baclofen (a muscle relaxant) helps her with this and she had a prescription to take it up to 3x/day as needed.  She usually took it in the morning and at night.  Unfortunately, this was also one of the medications the neurologist had discontinued and had in bold letters in her chart not to allow. 

I contacted Dr. Kincaid late that afternoon with an update and asking if the hospitalist ever called, to which she answered "no."  I was so frustrated (as was Alyssa, of course.) That was twice I had direct conversations with a physician where they looked directly at me and told me they would do something and did not follow through on.  I was ready to start going through chain of command and getting administration involved.  For all the slow steps we had taken forward over the last several months, it felt like everything came undone in one fell swoop.  However, Alyssa decided she would first try one more time to request the call.  The nurse told us the hospitalist had already left for the day so she would page her.  This page was enough to prompt the hospitalist to reach out Dr. Kincaid while she was at home that night. 

And that's what turned the boat around.  

They had a lengthy conversation and Dr. Kincaid was able to educate the hospitalist on some things she didn't quite have a strong understanding on. Some of the problem may be on our shoulders, as well, if I am understanding correctly.  We have been saying Alyssa has POTS.  And that IS one of the working differential diagnoses.  However, Alyssa has never been well enough to go through the official gamut of testing for it.  She would technically need to undergo a tilt table test to prove it and in order to do that test, one needs to be well hydrated or the results are called into question.  There are studies that show the validity of using standing tests and symptoms for diagnoses, but it is not the standard at this time.  However, Alyssa is chronically dehydrated and has been in and out of they hospital so much, the tilt table test not been a viable option.  Furthermore, a lot of Alyssa's dysautonomia presents itself in hemodynamic instability - problems with her blood pressure.  This may technically put her in a different category of dysautonomia than POTS.  She still has debilitating autonomic dysfunction that needs to be addressed, but which category under the umbrella it falls in has yet to be determined.  Therefore, it is incorrect of us to qualify it as POTS.  While the neurologist who checked Alyssa out in the hospital is more of a purist who says, "you haven't had the workup to call it this, so it's not this," Dr. Kinkaid says "We'll figure out what it's called but meanwhile, it's a problem and needs to be addressed." She also feels that the 2 times Alyssa has gone unresponsive have been in the context of being in a hospital with acute on chronic decomposition - meaning she has this chronic stuff going on all the time and then she has an acute event of some sort happen on top of it.  Her body just sort of says "enough" and checks out.  This can be considered "functional" or "psychogenic", but is in the context of considerable physical stress. The thought is that the best thing we can do to help Alyssa is keep her out of the ER and hospital.  Amen to that. 

The conversation between Dr. Kincaid and the hospitalist changed the course of Alyssa's stay and Alyssa was able to restart her Baclofen to help with her headache that night.  Rita, a part of the pain team was in the next day and restarted her Low Dose Naltrexone and the PRN meds for breakthrough pain, as well. 

Getting back to  where this started - Alyssa's flipped GJ tube...  She was extremely nauseous all weekend due to the tube being coiled in her stomach.  GI was consulted and while they were friendly, there were some of the same old conversations happening all over again.  There would be questions like "So you are afraid to eat because you are afraid you are going to be in pain or throw up."  Alyssa answered "I'm not afraid to eat.  I do eat little bites.  And I'm not afraid I'm going to be in pain or throw up.  I AM in pain and DO throw up."  They are 2 different things.  All weekend, she was asked to order things to drink or eat multiple times.  First, drinking is always harder for her than eating but she was put on a clear liquid diet, so it would be difficult under the best circumstances. Second, she was extremely nauseous with the tube coiled out of place in her stomach.  Do you keep eating when you have a stomach bug and feel like vomiting? I know I don't.  Why is that so difficult to understand?  And why does it become a psychological issue? Ultimately, she got her tube replaced by IR on Monday and she immediately felt better.  She was starving (as she hadn't even had tube feeds running since Friday) and we had to ask more than once to get her diet placed so she could order something. She still can't do much orally, but her desire and willingness to try is still there when she's not feeling so sick. 

Before being discharged on Monday, Alyssa did have a chance to talk with psych.  It was a lovely conversation and while they were also not there to diagnose or rule out anything, it was pretty clear that Alyssa has been working hard to take care of her mental health, she has the resources in place that she needs and is willing to utilize them as needed.  She does not have an eating disorder and does not need inpatient psychiatric care.  There was also a very nice conversation about the mind/body connection, which we all know is a very important thing.  While focusing on the body part, Alyssa also needs to be making it a priority to focus on her mind - as we all do.  Can't have one without the other.  This is always a work in progress, but something she is very cognizant of. 

I'm not naive.  I know our kids struggle with things that we aren't always privvy to.  I'm have no doubt there is plenty about Alyssa I do not know.  And anyone who knows me knows I am neither afraid of nor ashamed of mental health issues. I mean, dang, life is hard and there’s no use pretending we all have it all together.  I've watched Alyssa (and all my kids) struggle to find their way. Heck, I’ve struggled to find my own way. But I do not believe she has ever had an eating disorder.  She has always had a tall slender build.  In high school, when her issues first started with feeling bloated, getting full fast and losing weight, she thought it was due to a medication she was on and asked to be taken off it because of that. When she would lose weight during flares, she'd send me pictures of her body in tears because she did not like how thin or bony she looked.  She didn't like not having energy.  At one time when I went to buy her smaller clothes, she didn't want me to because she hoped she wouldn't be staying in that tiny size.  She begged for months, even years, for nourishment while so many people (professionals who she turned to for help) turned a deaf ear, saying she was just anxious, she had an eating disorder, or that she should be grateful because lots of girls would love to be her size.   These are the ingrained attitudes of our society.  These are our professionals.  She's been asking for help since day one.  She's been told she was just anxious since day one.  She has had this written in her notes since day one, which follow her and grow as she goes.  It's an issue that was appropriate to investigate.  But they also need to accept the findings and try believing her.  (Stepping down from my mamma's rant now.)

So - next steps...

Pain Team is back at the lead and Alyssa's daily meds are back on board

Dr. Hedberg, who we adore, is the surgeon who originally placed Alyssa's GJ tube.  Getting back to the original issue, we know that GJ tubes are notoriously unstable. And we can't keep replacing it every 6 weeks.  So Alyssa has a surgery scheduled for May 10, to get a separate J Tube placed.  Instead of having one tube that bifurcates into the stomach and the jejunum, she will have separate G and J tubes.  The intestine will be sutured to the abdominal wall and the j tube should be more stable, lasting much longer periods of time.  While he is performing this surgery, he is also going to place a gastric stimulator, which is like a pacemaker that provides electrical stimulation to hopefully help pace the stomach, maintain a more normal gastric rhythm and aid in gastric emptying.  This is known to work well in people with gastroparesis due to diabetes, but is a little more experimental in people with dysautonomia.  Dr. Hedberg has seen some positive outcomes with it, however, and is optomistic.  It is an action step that allows us to try something to move in the direction of getting Alyssa eating again.  

Meanwhile, Alyssa has an appointment on Thursday for an occipital nerve block.  This is to help with her occipital neuralgia  - those migrainey type headaches.  Then in a few weeks, she will receive her TAP block to hopefully help with the chronic abdominal pain.

She continues with weekly PT, OT,  and counseling and she has appointments with GI and neuro in the coming weeks.  

It's continued to be quite the ride.  We are hopeful that by stopping and taking the time to just focus on doing what she needs to do for her health, she can start to make great strides going forward.  As always, thank you for your love and support.  I'm sorry this is so long. I wish I didn't have so much to write.