Jun 8, 2017

It's Not Just a Meal


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You call into a brand newly opened, highly recommended restaurant to get a reservation. The person on the other end of the line is rude. She abruptly tells you you’re giving her the information wrong. She’s flippant and bothered to be talking with you. But because you’ve heard it’s a great chef with amazing food, you forage ahead and make the reservation. Afterall, maybe she was just having an “off” day.

You show up to the restaurant and the hostess is aloof, cold and unwelcoming.  Once you finally get a seat, the waitstaff is almost angry that you’re there. They seem “put out” to even serve you.

By the time the food comes out, do you even CARE anymore how it tastes? 
Do you think the chef has ANY idea how the front of the house is giving HIM a bad reputation?
And what can be done about it? You could complain, give a poor tip, put a bad review on Yelp, not go again, tell your friends not to bother.

Bottom line: We would not put up with it. And we would likely take our business elsewhere.
But what if this same scenario was about healthcare? This scenario wasn’t made up. I just changed the terms to reflect restaurant and not doctor.

In business: “The customer is always right”.  (Which I don't believe is true.)
In healthcare: “The patient is always wrong”. (Or so it seems.)

As a mother to 6 children with various special needs (one very complex) and a health concern or two of my own, this is a scenario with which I am all too familiar. I’m a semi-intelligent person who is proactive and engaged in the healthcare system. I even work for a healthcare organization.  (Shout out to AVA – the Association for Vascular Access. If ever you get an IV, don’t let them stick you more than 2 times before getting a more qualified specialist and consider vein visualization technology. It exists. Veins are important and you’re not a pin cushion. But I digress.)

I often wonder how the average person navigates through the healthcare system. It’s exhausting!

Last week I was to schedule with a new doctor. I called my primary care physician (PCP) to get a referral. They said I was calling too soon and to call back a week ahead. I did. Different person said, call back at 72 hours. I did. Different person said I was calling too late and that they couldn’t possibly get a referral out that soon and I’d have to reschedule the appointment (that I’d waited weeks to get). Do these people all get different training manuals? And each was POSITIVE she was telling me “the way it is”!

Now once I did get hold of the person and they agreed to help me, she started with “What’s the doctor’s name?” And I told her the group name. “Must have the doctor name or insurance will bill you as out of network and we aren’t responsible.” I tell her that I’m a new patient to them and they told me I would be seen by the first available doctor. (audible grumbles).

“Why are you seeing this doctor?” I tell her it’s because my PCP (her boss) told me to go to this group for follow up to a CT result. “That’s not something I can code. Why are you going?” I start to tell her a few basic details. “I don’t need all the details.” I was wishing I could have a stat script called in for a “Chill out pill”. Either she or I could take it … it didn’t matter. I guarantee my PCP has no clue her front office staff is this rude or inconsistent in dolling out policy as if it’s the Magna Carta.
 
Or this week, I showed up to a specialist for a follow up. They have no record of my appointment. They look at their computer and tell me the appointment had been for that time but for the day before. I pull out the appointment slip given at the last appointment. I was there on the date/time of the slip. She looked and said, “We changed it” and proceeded to tell me I owed the $25 for a no-show fee. Not sure how I could be responsible for their change and for not telling me. (I nicely declined to pay.) Whole thing had to get rescheduled as the doctor wasn’t in that day.

Or the whole notion of asking for our health history but not actually believing anything we say. I understand patients are often not forthcoming or are not accurate in their health history or even compliant with things such as meds. I’m certain that must be exhausting. But on the other hand, there are highly engaged and reliable patients who keep medical records due to OCD.

One example of that is my son was going to his not usual hospital for a sedated procedure. I handed the anesthesiologist my (abbreviated) record from our usual hospital about his troubles with anesthesia. He dismissed me.  A bit later, they had to come get me as my son was having horrible troubles with airway. They knocked out several teeth, did emergency airway, left bruising, etc. All to save his life. (For which I am grateful.) However, I’m also frustrated because this was completely avoidable. The reaction he had is exactly what was in his record. Why weren’t my hospital records believed?

Next issue: Informed consent. This is a tricky concept. Can a patient every TRULY be informed? Can they truly understand the risks, benefits and alternatives? Probably not. Afterall, we didn’t go to medical school. At the same time, it’s an important step. And not one to be glossed over lightly. I have a friend currently experiencing a much longer recovery time than was told. She was told about 3 days. It’s going on 2 months. And while this is still in the realm of normal, she wasn’t even told this was a possibility. And she’s a nurse!

I have to imagine it’s exhausting to a medical professional to explain over and over and over a procedure and its risks/benefits. There must be explanation fatigue. Afterall, they have likely told 1000’s of patients. But for THIS patient? It’s their first time. And they deserve the best explanation, just like it was their mother or sister or daughter. How to do this? I have no clue. I’m simply saying that patient safety is also tied to patients understanding.

And before you think I’m down on the whole profession – I’m not. There are doctors and front office staff who are amazing! They truly understand patient perspective. They educate and inform. They collaborate and partner with the patient to help promote the best quality of life. Unfortunately, these are becoming fewer and further in between in my experience.

My advice: If you work for a healthcare organization, do your best to provide good, basic customer service. If you are a patient, be kind as you advocate for yourself and your needs. But get your needs met.

This isn’t easy. But it’s not just a meal. It’s not just a restaurant we can choose to go to or not. It’s our health. And that’s worth the effort to figure this out.


Jan 12, 2017

PTSD or is it CTSD? Current Traumatic Stress Disorder

PTSD: Post Traumatic Stress Disorder.
If you google PTSD, the first words to pop up are, "anxiety and flashbacks triggered by a traumatic event". Below is an image of some of the common symptoms.
However, there's basically nothing about what I'd like to call CTSD: Current Traumatic Stress Disorder. That's what medically fragile patients and families deal with. The triggers are CURRENTLY happening. Not in the past, but NOW. They're not imaginary things triggering flashbacks. The events inducing stress are happening NOW, PLUS triggering the PTSD.
In PTSD, say a person who had experienced a violent break-in gun point robbery in their home. Maybe they heard breaking glass first. So say they're in a restaurant one day and a glass breaks. They're right back in that moment. It's not real. But it triggers all the old feelings instantly transporting them back through flashbacks.
But if that same person had a second violent break in, it would be the PTSD from the first one but also the terror from the current one.
Now imagine that over and over for YEARS with no end in sight.
That. Manny lives there.
Now as you let that sink in, I'll add one more layer. My layer.
Back to my break in analogy. While the violence is happening, I help the robber hold down my kid. I welcome him in. I tell my kid to stay calm through the pain and unpleasant and terrifying events.
So I hear breaking glass, I know he'll be terrified and hurt. And I know I'll have to try to keep him calm throughout. I know I'll try to convince him it's for his own good. And he won't believe me. In fact he'll lie and tell me he's not in pain or his tube is not broken or his blistered skin is better. He'll beg me not to let the robber in this time.
Repeat. Multiple times a day. Multiple times a year. For years. With no end in sight.
In fact, there's a metaphorical robber in my house right now. We are waiting for a call of when the next part of the trauma will begin. Likely Monday or Tuesday. Until then, I'm trying to keep the robber hidden. But Manny knows he's there. We both try to pretend he's not.
And my brain goes to how to better protect my kid and house for the next one after that. Could I make better decisions so he'll not end up here again so soon? It's why I've become OCD in so many areas of life. Every time I find a new vulnerable place, I board it up.
I'll add that first responders (military, police, firefighters) etc are also greatly affected. It's under recognized and under supported. They are PTSD/CTSD as well. And probably a few other very challenging jobs I've not even considered. Different details, same effect.
And when one family member suffers from this, the whole family suffers.
I could go on and on explaining this concept. For those living it, they're like "preach it sistah!" And for those who don't live it, be thankful you can't begin to truly grasp this concept.
Bottom line: if you know a family who lives in these type of trenches, pray harder for them. They're probably barely surviving. They're in survival mode and don't know how to reach out and ask for help. They are too busy fending off the past, present and future bad guys to figure out what they need. So be there for them. Give them space but let them know you're there. A meal. A card. A gift card. Help clean their house. Babysit. Pray. And expect nothing in return. Do it for them.
Most of these families have lost most of their friends over time. They are busy trying to get through one day at a time. Doesn't make for fun conversations over coffee at Starbucks. We aren't much fun at a party. We have very few shallow things to discuss and little patience to do so. We are traumatized. (That's the T in PTSD).
And the longer it goes, the more we realize this will never end. THIS is our new normal. And how do we make the best life from here? We continue to get up every day and make a stab at our new normal. Aware that every day, we've lost a little bit more of it.
And while it's not a hopeless place... It's a terrifying place. Those who know me know I laugh way more than I cry. I have a continual smile on my face. I'm hopeful. I'm optimistic. I CHOOSE to focus on the good rather than the bad. Daily. I force myself to see the hope and light and love and outright miracles that surround me daily. I feel the support. I know we are loved. I feel the prayers. I live there.
In fact I live there so much, most people probably had no clue Manny and I also live in the land of CTSD as well.
And so do thousands of others.
Today my goal is to raise awareness. Those of us living with PTSD or CTSD are among us. They are messy and hard to love sometimes but love them anyway. Identify those people in your life who maybe living it. Reach out to them. You may be their only lifeline.

Sep 25, 2016

1 Million Pokes Campaign #1MPokes

I  have a confession
As a mother, one of my most important jobs is to protect my child. So when I fail in that area, it's particularly burdensome. Yet I have failed to protect my son countless times. The guilt is overwhelming.

Imagine a scenario in which a bad guy enters your home and starts to physically hurt your child. Your very first instinct is to stop the injury, even if it causes harm to yourself. Can you even imagine just standing there and not stopping it, doing nothing? Or even worse, can you picture a scenario in which you actually participate by restraining your child while the bad guy hurts your child and you tell your child to stop crying? Sometimes repeatedly? Over several hours? 



I have.

We adopted Manny when he was 9 months old and 6 weeks later, he ended up in the hospital needing IV fluids. This started his very long and complicated history with IV needle sticks or “pokes” as many kids call them. It was not unusual for it to take several people attempting, multiple pokes and 3-4 hours to get an IV in.

Early on we learned  to value the Vascular Access Specialists who could almost always get his IV started on the first try.

Some of Manny's first words were learned during these poke sessions. I would stand there and try to comfort him, distract him and calm him.  But I could not protect him.


Clinicians, meaning well, will often try to comfort Manny by saying, “Mama is right here.” I understand what they are trying to convey. However, what Manny heard was, “Mama is letting this happen.” In fact, because Manny is frequently in the hospital and in need of an IV, he started getting quite angry with me. Afterall, I LET them do this to him. Repeatedly.

Sometimes they are short staffed and actually ask me to help hold him down. I cannot begin to describe the conflicted feelings. But mostly I feel helpless.

Yes, I am well aware that the poke is necessary to get blood for tests, to give fluids and to give IV medicines.  But it's nearly impossible to explain to a baby, toddler or child that “this is for your own good.” And it doesn't alleviate the guilt I feel.

Unlike my earlier hypothetical scenario, I'm highly aware these clinicians aren't “bad guys,” they are doing their job and acting in the best interest of my son. But that's where the differences end.

Because this has been so traumatic for Manny and for me, I started learning how I could best advocate for him. I've even discovered a wonderful organization called “Association for Vascular Access” or AVA. 

This organization certifies Vascular Access Specialists to become premiere specialists who ensure the right device is placed for the right patient by the right clinician at the right time. They work with manufacturers of these devices to develop and produce the best products.


This Fall, AVA's Pediatric division is rolling out  “A Million Pokes Saved” campaign. #1MPokes

Research: Create a vision for future research to contribute evidence that is currently lacking in pediatric vascular access.

Special Skills and Knowledge: Determine the groundwork of education and special skills required to preserve children's precious vasculature and how to share that knowledge with others.

Tools: Generate tools that help build skills needed to implement change.

Partnership
: Develop collaborative relationships with institutions to raise awareness and champion change.

I might not be able to prevent Manny from getting an IV and “pokes” in the future. But maybe, AVA can help him and the millions just like him have less. That speaks to my mama's heart.











Oct 7, 2015

A New Approach to Saving Lives


I think we’ve been going about things the wrong way. 

Remember back as a kid in school and they would have us brush our teeth, we’d eat this red candy-like nasty tasting thing and whatever places we missed turned our teeth red?

http://drjohnart.com/wp-content/uploads/2012/03/C0048345-Disclosing_Tablets-SPL1.jpg

https://upload.wikimedia.org/wikipedia/commons/3/39/Plaque_Disclosing_Tablets.jpg

Why can’t we do this with germs? 
Think about it … flu germs, cold germs, nasty bacteria, anything.  If we could SEE it, we might be able to combat it.
As a Mom, I'd LOVE something like this in my home. I could see where the germs are lurking.  My kids do what my mom used to call, "A lick and a promise" when asked to wipe a cabinet or sweep a floor. If they could actually SEE the germs they missed, maybe they'd be more helpful in wanting to join my crusade.  Or maybe not. Maybe I'm delusional.


As a Mother to several kids with special needs, two of which are immunocompromised, I find it strange how people think nothing of going out in public while quite ill. They almost wear it as a badge of honor, "Look at me out here doing stuff while I'm sick as a dog!" I need to be able to see these germs a mile away. 

As a Professional, I deal in the world of vascular access and general health care concerns. We know that hospital acquired infections are a huge loss of money for a hospital, not to mention complications for the patient including morbidity and mortality.  We also know that simple things like good hand hygiene can drastically help reduce these infections. 



So what if they were VISIBLE? 




4 years ago, one such bug got into my son’s IV and nearly killed him.  Any parent who has seen their 2 year old in septic shock fighting for their life will not take these bugs lightly.  Since then, I’ve been asking questions of how we can make system wide changes for people to do the right thing like wash hands, scrub the hub and increase general education for clinicians as well as the general population.

Today it hit me … make the germs visible! Then we could SEE which clinicians are “Typhoid Mary”, which surfaces are teeming with bacteria and which instruments haven’t been properly cleaned.  We could also visibly see what chemicals kill these germs so we can know the most effective treatments.

It’s estimated by the Center for Disease Control (CDC) that there were 722,000 hospital acquired infections in 2011 (the latest updated source I could find).  And about 75,000 die from these infections.  Read the following article if you dare.  But you’ve been warned, you will feel the need to scrub after. 


For those who would just rather the down and dirty, it says 1 in 25 are estimated to get a hospital acquired infection each year.  For those of us who are frequent flyers, or who have immunocompromised loved ones, this is particularly scary.  My son has had several in his short 6 years of life. 

For comparison, here are some breast cancer statistics.  http://www.breastcancer.org/symptoms/understand_bc/statistics

Basically it estimates there are just under 300,000 cases of breast cancer per year and about 40,000 deaths.  That’s horrible.  One death is too many.  And I’m thankful lots of attention is being placed on this epidemic. 

What’s shocking to me is that basically NO emphasis is being placed on these hospital acquired infections and the numbers are more than double for getting an infection and almost double the rate of deaths.  But instead of highlighting the infection rates and need for system wide improvement, it’s virtually a “dirty little secret.”  No pink ribbons, no football players going pink, no one talking about it at all. 

Another difference between these hospital acquired infections and breast cancer is that with the breast cancer, there is currently no known cure or preventative.  There IS for these infections.  Which makes each death just that much more painful in my opinion.
The good news is ... there is a group working towards addressing these issues.  AVA and the AVA Foundation (www.http://avainfo.org) are working collaboratively with governmental agencies, medical organizations, schools of nursing, the private sector and patient advocacy groups to help shed awareness of and solutions to the problem. Don't be surprised that you'll be hearing more about these infections in the near future. 
We need your help! 

So back to my idea … anyone know how to make germs visible?  It could save about 75,000 lives each year.  One could be yours or someone you love.

                                                                                                                                                                        

 

 

 

 

Sep 12, 2015

Take Care of Yourself


I’m so irritated. 

I just browsed yet another article about how Moms need to take better care of ourselves.  Now mind you, it was written by a young, rich celebrity, first time mom.  The baby is still an infant.  I might buy in better once that new baby smell has worn off.  Or if the nanny quits.  But for now, it’s just another reason to feel “Mommy guilt”. 

I’ve heard all the points before.  I actually agree with them.  Like, “If I don’t take care of me, who will take care of the kids?” Good question.

I’ll admit I’m pretty bad about remembering to take care of me.  I’ve actually gone to a restaurant and ordered for everyone else but forgot to order food for me.  (Sadly, this has happened more than once.)  Or I bought special lenses for my 5 year old’s glasses but ordered the cheapest I could find for me.  Last week, one of the kids helped cut some cinnamon bread and they forgot to include a piece for me and I feigned like I didn’t want any anyway (though truthfully I’d been drooling for some the whole time it was baking).  And there are days where it is too exhausting to shower, so I just crash instead. 

So why do these articles cause me to want to run into the closet and inhale a bag of potato chips feeling like I’m failing my kids by not taking care of me?  Because the truth is - sometimes it’s just not possible to take care of everyone on the list. I will be last. Sometimes there’s not enough of me to go around.  I’m OK with that.  Why aren’t others OK with that?

I have a son who is 6.  Manny is quite medically complex and requires someone to monitor him 24/7. He cannot sit, stand, crawl, walk or use his arms independently.  If his nose itches, he has to ask someone to scratch it for him.  If his arms fall from his tray, it’s stuck there until someone picks it back up.  If his neck falls forward, it’s stuck there until someone sets him up. 

He aspirates often. You know that feeling when a piece of food starts to go down the wrong way and you choke and sputter trying to keep it out of your lungs? Manny does not do that.  He is not able to protect that airway so the saliva slides straight down into his lungs. He does it with no signs that it’s happened until a few days later when he gets aspiration pneumonia. This is called Silent Aspiration.  The only way to avoid it is to be ready moment by moment to suction his mouth.  This means eyes have to be right on him at all times. 

Now let’s say I need a shower.  His needs are greater than mine.  He will win every time.  I’m OK with that. 

The “You’ve got to take care of yourself Nazis” as I like to call them say I need some “Me” time.  OK.  Sounds delightful.  Let’s say I want to sit by the pool, have a sip of wine and read a good book.  And say my son who can’t swim falls into the pool.  I’m supposed to just sit there, sip my wine, continue reading and say, “Sorry son. I can’t get you right now.  I’m having some ME time.” 

People would say, “Of course not! That’s an emergency.” 

And there’s the catch. 24 hours a day. 7 days a week.  I live in Emergency mode.  All. The. Time. 

People who don’t live in this world cannot possibly comprehend that. 

I have a friend whose child had a significant surgery.  For almost 3 weeks, they stood vigil over that child. They were exhausted from 24/7 care for 3 weeks.  For those weeks, the mom didn’t really eat much or sleep well and showered when she could.  Then the child recovered.   Life resumed. 

Another friend has a child who was diagnosed with pediatric cancer. Same basic scenario.  Testing, drugs, hospitalizations, terror round the clock for over a year.  Finally the child went into remission and the family started to regain some semblance of normalcy. 

We have been doing this for over 5 years.  With no end in sight.  This is my life.  There is no recovery from Manny’s diagnosis.  In fact, it’s a progressive disease … meaning this is as good as it gets.  We’ve already seen the decline. 

The trick is trying to find a way to LIVE in the middle of this.  Trying to find a way to include myself on the list.  Trying to see if I can eek out any part of energy or time for things that rebuild and rejuvenate me.  And truthfully, most times, if there does happen to be any time or energy in a day, I’ll use it to spend with my other 5 children who have various special needs as well or with my husband. 

And please hear me clearly.  I am NOT complaining.  I love my life.  I chose my life.  I would do this all over again in a heartbeat.  I am fine with not having a lot of “Me” time.  I’m fine that I put myself far down on the list.  If I wanted it another way, I’d do it another way. 

I’m happiest when I’m taking care of other people.  I’ve found a peace in my choices.

So maybe those articles fail to point out one thing … there are mothers like me who choose to put others first and ourselves last.  Maybe by taking care of others we are meeting a need in ourselves.  Maybe, just maybe, we need to realize that “Taking care of ourselves” is a good thing … but it will look very different on each mom.

Here’s a message for my fellow moms.  You’re doing a great job.  Hang in there.  Hold your head high knowing that you are daily making a difference in the life of another human being.  You are doing one of the most important jobs on the planet.  Take care of yourself.  In whatever way that works for you. 

 

 

Dec 28, 2014

2014 ... It's a Wrap!


2014

Dan and Beth celebrated their 20th wedding anniversary on December 25. 

 

Jacob
 age: 16. 
grade: 10th
height: 5’11”
weight: 190 pounds
hobbies:  reading books (especially military and history), discussing politics and current events and dancing.

 

Kaley
 

age: 15
grade: 9
th height: 5’2”
weight: 85pounds
hobbies: reborns (a collectible type of doll), cake decorating and taking care of Manny.

 

Sam


age: 13
grade: 7
th height: 5’11”
weight: 130 pounds
hobbies: electronics, reading, handy-man things.

 

Luke 
 

age: 11
grade: 6
th height: 5'1 1/2"
weight: 104
hobbies: legos (and Halo), reading and baking sweets

 

Zoe

 

age: 9
grade: 4
th height: 4' 5 1/2"
weight: 60
hobbies: listening to music, exercise, Just Dance

 

 

Manny

 


age: 5
grade: Kindergarten
height:  46 inches
weight:  55 pounds
hobbies: ipad (minecraft, angry birds/bad piggies, Catapult King), running in Big Red (his wheelchair), and playing with his siblings

 

Thanks to all our friends and family for your love, prayers and support. 

 

 

Nov 18, 2014

Mystery Solved?!?


When we adopted Manny, we knew we had a mystery diagnosis on our hands. Two years later, we found a part of the clue. But it wasn’t the whole picture.

So 4 ½ years of mystery.  And I think I figured it out this weekend.

Background: Every time food goes into Manny’s digestive tract, he does a weird constellation of symptoms.  They got progressively worse until the point where we had to stop all feeds.  Nothing went in his mouth, stomach or digestive system.  ALL went into his veins (TPN).  That was 3 years,1 month ago.  TPN is not without its dangers, however. We have tried feeding trials along the 3 years but they all resulted in the same horrible symptoms that initially landed us on TPN. 

What were his symptoms: The symptoms were numerous but include having a very high heart rate, a high respiration rate, lungs sounding “wet”, intractable retching, copious oral secretions, a g tube output greater than his j tube input, multiple large diarrhea episodes, etc.  What would ultimately cause us to stop feeding him was the inability to breathe and a heart rate of about 280.  There became a pattern that was progressively getting worse.  I would say to anyone who would listen, “He’s not drowning on his formula, he’s drowning in his own secretions!” Everyone would tell me this was not possible.  But I was watching it happen.

Getting ready for this feeding trial: In January we sought out a specialist. In February we were inpatient at a different hospital and had specialized testing done.  Along the way, we tried various medicines and tried numerous things.  We thought we were ready for the trial. So we were admitted.

Why now: We feel like his proverbial ducks are in a row.  He’s been healthy for a while. He’s been on bipap and is a lot stronger than he used to be. If not now, then when?

The feeding trial: We started fairly aggressively compared to the past trials with rate but did quite short duration.  (By going faster, we can give him a longer break in between feeds.) We started a new medicine that was recommended based on the testing that had been done.  We had a second medicine added to the TPN. 

The happy accident: Tuesday Manny had his old tube traded for a new one. (The old one was broken.) While there, he must have been exposed to something he is allergic to (likely CHG). By Wednesday we started the feeding trial.  It was not going super well.  All the old symptoms were starting.  He was retching, draining from his g port, heavily salivating, sounding generally “wet”, etc.  And then he broke with horribly itchy rash. IV benedryl was ordered.  I noticed that within about 10 minutes of the benedryl being started, ALL his symptoms stopped.  Like a water faucet that had turned off.  6 hours later (presumably when the benedryl wore off) the symptoms returned.  Repeat. Same results. 

The research: I was intrigued. I started asking if Benedryl dried up secretions like that. No was the general thought. But I persisted in researching.  The feeding trial was continued, and by Friday I was convinced we would eventually have to discontinue the trial as he was starting to do all his “old tricks”.  Saturday he got his regularly scheduled iron. They give him benedryl before it.  And what do you know? His symptoms ALL disappeared again.  Like a light switch.  Not this was no longer a fluke, it was a pattern. And I was paying attention.  The first major HINT in 4 ½ years!  I stayed up researching and found a possible diagnosis that fit.  It was an almost perfect match. 

The diagnosis:  As of right now, we have a “presumed diagnosis” of Atypical Chronic AngioEdema.  It’s more common presentation is emergent (quick acting) periodic (like once a year or once a month or once) very large swelling of a body part such as the lips, eyes, etc.  If a person has this affect their airway, they would get Epinephrine. But if not, they would likely give IV Benedryl.   

  • Angio means vessels, meaning related to the blood vessels or lymph vessels, etc. 
  • Edema means a swelling of organs, skin or other part caused by buildup of fluid in the tissues.

In this type of edema, it’s called “Non pitting edema”.  In typical edema, you can push on the affected body part and it will leave an indentation.  This kind does not.  Instead, you’ll just be “puffy”.  (Anyone who knows or has seen Manny will likely know he feels super puffy ALL over.)

Most angioedema is episodic (meaning rarely or hap hazardly) vs chronic (as is Manny’s case).  But in his case, his has been chronic/constant.  And it’s certainly gotten more profound and pronounced over the years. Which means it’s progressive.  (He does have a lot of “exposure” allergies … meaning they get worse the more he’s exposed to them.)

Now how it affects Manny:  Abdomen can be affected in certain situations.  And this seems to be the case for him.  When something travels through his digestive system, it triggers this histamine/autoimmune type of response and his body goes into hyperdrive overproducing secretions.  In his case, it’s also periodically caused swelling of his airway.  We’ve found this out the hard way.  And he is even difficult to intubate these days. 

The “treatment”: He gets IV Zantac for digestive symptoms already.  Which is part of the treatment for chronic angioedema.  He is getting augmentin for his motility.  This can also be used.  And they added Zyrtec.  It’s similar to Benedryl without knocking him out.  Verdict is still out if it will work as well as benedryl.  (So far, it's not as effective.)

This makes his symptoms lessen (not gone).  His gtube output is still too high (basically about the same amount that goes In his Jtube comes out in secretions from his gtube.  He is still retching but not severe.  His heart rate elevates with the feeds but not super high.  His diarrhea is bad but doable.  So in other words, he still has all the symptoms but they are at a “tolerable” level at this point. 

Because he is on 6 hours of feeds that equals 210 ml of fluid, tonight (Tuesday), he will officially drop down on his hours on TPN.  He was on 21 hours a day and we are going to 18.  The first REDUCTION of time on TPN in his life! Those hours he’s off TPN is when he’s on feeds so that his blood sugar doesn’t plummet. 

Discharge:  If all continues to go well with this plan, we could go home Thursday.  Many stars have to align to pull this off.  Medicines.  Machines.  Etc.  But still.  This is crazy!

For the first time in over 3 years, we could be going home ON FOOD!

Future: We will develop a plan as we go.  We will see how well he tolerates this and go from there.  We could adjust the rate up or down, the amount of time he’s feed up or down, adjust the medicines, try more testing to see exactly what “triggers” the angioedema, etc.  We have a lot of options as we go forward. 

Theory: I also have a theory of the cause of all this.  I’ll save that for another time.  But if I’m right, it has implications for many other kids. 

Do we have this 4 plus year mystery solved?!?