Tag Archives: health

Chapter 1. The dance.

17 Sep

The alarm goes off and I’m reluctant to open my tired eyes. It’s 6am, my feet haven’t even hit the floor and already, I’m exhausted.

“Again? Is it morning again? Seriously?” Those are usually my first thoughts of the day.

I glance over at the bedside table at the video monitor whose black and white screen brightens my darkened room. I squint intently at the tiny screen listening and watching for any kind of movement from the mound of blankets that the camera points to. I’m also holding my breath, hoping all is still quiet. “Please. Please. Please. Just one cup of coffee.” I think. “I need just one cup before we start.”

All quiet. No movement. All good. For now. I slip quietly down the stairs and head to the kitchen where I make my first of many cups of coffee. I have about 45 minutes to sip coffee and enjoy the quiet before I start my day, getting my other two kids off to school first. It really is quiet, and I should be relaxing, but rather than do that, my brain is already going a million miles a minute with anticipation of the day. Who am I kidding? I never relax.

I think most of my exhaustion comes from my emotional exertion. The constant fear and worry that has plagued my brain for months now. Will today be better? Will it be worse? I never know how good or bad the day will be until I wake up the girl lying beneath the pile of blankets. When she opens her eyes, how she opens her eyes, how she moves, how she stretches, her facial grimaces, how much she shakes…these movements all have their very own file in my brain and each one of them gets logged in as they are performed. I then do a quick calculation to determine what will be possible for that day. How bad will she be?

As I uncover her, I do a quick physical assessment. As a trained nurse this is second nature. I’m looking at her coloring, her breathing, feeling her forehead for a temperature. How is her stomach? Does it look bigger this morning? How much is in her ileostomy pouch? What color is it? I lift her shirt to look at her gastrostomy tube. Is there drainage under the bandage that protects her skin from the plastic disc that sits atop it? I lift her shirt a little more to look at her chest and the dressing that covers her central IV line. Is it red? Is the dressing intact? Does it look the same as yesterday? All these things are done in less than a minute.

On days when she opens her eyes quickly, or is already awake, I know she’s probably feeling pretty good. Especially when she flashes me a smile when I say her name. ” Good morning, Oli!”

On days when she struggles to wake up and doesn’t want to move, when she grimaces instead of smiles, I know it’s going to be a tough one. These are the days that require the most emotional (and physical) exertion. These are the days when I can barely keep my tears at bay and the fear stays lodged tightly in my throat.

This morning it took me almost 30 minutes to get her up. My heart sinks with the realization of what that means. “Shit. I should have had two cups.”

I do everything that I can for her while she is still lying in bed, mentally checking off items as I complete them. I go cleanest task to dirtiest. The IV pump has just sounded three short beeps which indicates that her TPN infusion is complete. I cross the room to a long table that sits under her wall mounted TV. It is heaped with plastic bins containing hundreds of medical supplies. I chose one saline and one heparin flush that are wrapped in plastic, a Prevantics device swab, and a green cap from the top shelf. Reaching over the still sleeping form I grab the black bag containing the now empty bag of TPN and the pump. Lifting a flap, I turn the pump off and lift her shirt so I can disconnect the line from the IV. Once disconnected I start swabbing the hub of the IV with the disinfecting square and begin counting in my head.1…2…3…4…5. Then I let it dry…1…2…3…4…5. Next, I attach the saline flush and depress the plunger in quick stop and go motions. Then the process is repeated all over again before I attach the heparin flush. Finally, after the line has been sufficiently disinfected, flushed and heparin locked, I clamp the line and reach for the green cap that will cover the hub of the IV and will prevent bacteria from getting in. The IV is finished. Check. On to the next.

I slowly stand and straighten as pain runs down my spine after intently hunching over the bed. A quick glance at her face and lack of movement tells me that she’s going to need her medication before getting into the shower. If I can get her into the shower. Some days that’s a really big if. This will be one of them.

I walk into the kitchen over to a counter that used to be empty except for a Keurig machine. It is now home to a Keurig machine, a drying towel covered with syringes and 3 clear, plastic storage containers filled with numerous medications and the supplies to deliver them. So many meds and supplies. I have literally brought work home with me.

There are pills, tablets, liquids, syringes, syringe caps, connectors, pill crushers, small medicine cups, tubing, and sterile water. I quickly crush, mix, and pull up her morning meds. I glance at a printout taped to one of the top cupboards, confirming that I haven’t missed anything. Although, in all honesty, her med list changes so frequently I would have to print out a new list weekly to keep up. The big ones are on there, so it’s something to reference. I remember to add in the new ones, gather up all the supplies and walk back to her room.

On my way back to her room my phone buzzed silently in my pocket. A quick glance at my watch and I recognize the number instantly.

Hospital.

With butterflies in my stomach, I pulled out my phone. I have weird, juxtaposed feelings when seeing this number. On one hand I dread it. It could mean devastating test results or scheduling painful procedures. On the other hand, it could mean a new idea for treatment. Or a test result revealing some long-obscured answers that have eluded us for almost a year. It could be the answers to the questions that I’ve been asking for months and months.

What’s wrong with her?

Unfortunately, this morning, fate is not on our side. I answer the phone and hear a chipper, warm, female voice on the other line “Hi! Is this the parent of Oliana?”

“Yes.” I reply cautiously. This is not a doctor. This is office staff. This is someone calling to schedule something.

“Hi! I’m calling to schedule a procedure. Do you have a few minutes?”

Oh great. I mean…” Great! Yes! This is a good time to talk.” I say, putting her on speaker phone so I can pull up my calendar.

In the last 9 months we have repeated the same two procedures numerous times.

We’ve never gotten any new results. These procedures have never resulted in any answers. It’s the same thing over and over and over….

What’s the definition of insanity again?

But maybe this time will be different. That thought causes me to chuckle to myself as the voice on the other end of the phone rattles off a date and time.  She goes through the pre procedure instructions, which I’ve heard a dozen times before. Oli is at the hospital about every other week for some kind of surgery or procedure. Before she gets to the “don’t let her have anything to eat or drink after midnight” part, I stop her.

“I’ll save you a little time. Oli doesn’t eat or drink or take anything at all by mouth.”

There’s a brief silence on the other end. I can hear her thoughts as though she has spoken them aloud.

Doesn’t eat or drink? Like, ever?  

But what she says is “Ok. Don’t put anything in her Gtube…” I stop her again before she can go on.

“No. I mean she doesn’t have any kind of food or liquid going into her stomach by any route, ever.”

Another long silence.

I get it. It’s not possible to not eat or drink. Ever.

As the silence continues, I go on “She has an IV and gets all her nutrition through her IV. She is on TPN.” I never know how much to say or what language to use when giving the office staff information. Does she know what TPN is?

“IV nutrition.” I quickly followed up with that. Just in case.

“Oh okay. Okay. So, nothing by mouth?”

“Nope. Nothing by mouth.”

“Okay well I’ll skip that part then. To get to the procedure check-in you’re going to…”

“Park in the garage. Walk into the building take a right and walk all the way down, crossing into the hospital and check in at the desk on the right.” I finished for her. This isn’t our first rodeo.

“Right. Some people don’t know so I like to give very explicit directions.”  I can hear just a hint of annoyance in her previously chipper voice.

Well lady, sorry. I have things to do and meds to give and we have done this dance every other week for at least the last 8 weeks. . I don’t have time for the repetitive dance steps on this particular morning. I have a sick girl in the other room that I need to get back to.

“I appreciate that. Thank you for your time.” I repeat the date and time again and she confirms ending the call with a curt “goodbye”.

So, how did we start this whirling, twirling never-ending dance at this god forsaken rodeo?

That’s a whole story. Let me take you back 17 years to Las Vegas, Nevada and a beautiful May afternoon in 2007.

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Organ Transplant Discrimination and Disability: The Shocking Reality

10 Jul

In a mere instant, again, life will never be the same.

I was completely blindsided in a GI appointment with Oli today. We have always known that Oli’s injury to her intestines in West Texas was catastrophic. The probability of nerve damage caused by lack of blood flow was high. The GI doctor likened it to a victim of drowning. He said “you know when you have a drowning victim, afterwards in the ICU they do an MRI and the brain looks normal? It looks normal but their brain does not work anymore.  The person suffers from severe damage. That is probably what has happened to Oli’s gut. The nerves in there have all been damaged. I don’t want to be negative, but in my heart, I don’t think this is something that will get better or can be fixed.”

When I mentioned the topic of next steps and how we can go about getting her listed for an organ transplant there was a look on his face that stopped my world in an instant. That look conveyed something that I had honestly never even considered.

Oh, how naïve I am about the way of things.

The doctor didn’t say it in so many words, more of a fumbling around about way saying something like “she’ll have to go to Houston, and they will have to evaluate her to see if she even could be listed”.

Could even be listed? Why couldn’t she be listed?

I know that sounds benign but there was a look on his face and a look in his eye and a failure to meet my bewildered gaze that told me all that I needed to know. Something that I had never even considered. There was an incredibly good possibility that my sweet girl was never going to be listed because she had the unfortunate disadvantage of being born with a disability.  

He walked out of the room and I sat in silence for a moment stunned, as the tears began pouring down my face. How could they just NOT help her? How could they let this beautiful girl, with the most incredible smile and disposition, just die?

I immediately jumped online to prove to myself that this was not a thing. There was no way that this could be true. People with disabilities are people. First and foremost. They have a right to medical treatment just like everyone else. I must have misunderstood.

I did not.

I read article after article titled:

“Push is on for states to ban organ transplant discrimination”- CBS news

“Organ transplant discrimination against people with disabilities”- National council on Disability

“Equal access to organ transplant for people with disabilities”-National Institutes of Health

“They say their children are being denied transplants because of their disabilities”- CBS news

“People with autism, intellectual disabilities fight bias in transplants”- The Washington Post

And on and on…

There are so many out there. That was just a simple Google search. There are so many families out there with stories about how their child died because the transplant center refused to list them. Stories about how families had the law changed in their state so they could not refuse to transplant the child due to a disability.

Did you know that a study in 2008 found that 85% of transplant hospitals considered a child’s nerurodevelopmental delay when considering their eligibility to be listed on an organ transplant list? I would like to say that in the 10+ years this has changed but sadly, for the most part, it has not. A research paper by the National Council on Disability from 2019 titled “Organ transplants and Discrimination against People with Disabilities” states:
“People with disabilities are often denied equal access to organ transplants solely on the basis of their disability. These denials are frequently based on discriminatory assumptions that the lives of
people with disabilities are of poorer quality than those of people without disabilities, and on
misperceptions about the ability of people with disabilities to comply with postoperative care.”

And then I googled “Do special needs people get denied organ transplants in Texas”.

That is when I saw a glimmer of light. I found House Bill (HB) 119 that was passed in September 2021 during the 87th Legislature that prohibits organ transplant recipient discrimination based on certain disabilities. It states “When determining whether an individual’s disability is medically significant to the organ transplant, a health care provider may not consider the individual’s inability to independently comply with post-transplant medical requirements when the individual has a known disability and the necessary support system to assist them in reasonably complying with the requirements.”  

House bill or not I am prepared to have to fight for her to have this opportunity.

Even though under the Americans with Disabilities Act and the Rehabilitation Act the practice of denying people organs because of their disability is illegal, it is up to the transplant physicians to evaluate these patients. I promise you, there are ways around that and reasons they can list why they would not be good candidates.

Coincidentally, (if you believe in coincidences) I am in the business of organ donation. I currently work for an Organ Procurement Organization (OPO) and have for 4 1/2 years now. I completely understand the states concern for maximizing these gifts and making sure that the person receiving them can comply with all treatment and make sure that these donors’ gifts do not go to waste. I’ve watched families of donors rejoice at the thought of their loved one’s organs going to save someone else’s life. I have seen the peace that it can bring. I’ve also seen families agonize over the thought of someone taking an organ out of their loved one’s body after they have passed and placing it into someone else. These families are caught off guard when they realize that they signed up to be an organ donor. I have also seen about 90% of those families walk away with their minds completely changed and hope and peace in their hearts when they realize what a heroic and selfless decision their loved ones made. Organ donation seems to be a hot topic and not everyone agrees. And not everyone has to. It is an individual decision and I am not here to tell you what is right for you or your family. What I am here to tell you is that my daughter has every right to have an opportunity to receive one of these precious gifts because she is a person.

According to the Texas House bill she must have “the necessary support system to assist them in reasonably complying with the requirements.”  And she does. Because Oli has me. Forever. Oli has me to keep up with her appointments and her meds and all the things that I have done for her entire life. And I am committed to continue doing these things until there is no more breath left in my lungs or blood flowing through my veins. The day that she was born I looked into her sightless eyes, and I made a promise to do everything that I can to help her. I promised to be her eyes and her voice and her legs and anything else that I can do and give her if she needs it. I will not stop now. I will not take no for an answer because she is worth something and her life is worth something and she matters.

My Oli matters.

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Something is wrong with Oli. Part 2: What was happening?

11 Feb

I got a text from Oli’s dad a few hours later around 10am saying “She’s getting the full work up- Covid and flu test, CT scan because her tummy is super swollen and hard. Blood work and even a catheter.” I continued working that day and then took a break, heading into my front yard to begin putting up my outdoor Christmas decorations. I began putting up my Christmas decorations. I can’t believe I was so oblivious. As my little girl was lying on the uncomfortable, hard surface of an ER cot, fighting for her life, I was prancing around my front yard putting together Rudolf and blowing up a 9ft gingerbread man. If I could, I’d go back and punch that girl in the throat and tell her to get her ass in the car immediately! I was an ignorant, naïve person who thought nothing bad would ever happen to me or my family.

I was wrong.

The first few calls that I got from Oli’s dad made it sound like the hospital didn’t seem too sure about what was going on, but it didn’t seem like anything was too bad. I continued to go about my day. He said they had decided that they were probably going to admit her to the medical floor there at the Midland hospital. They were worried that there was something going on with her stomach. A little while after that I got a call from him saying that they didn’t think they could treat her in Midland and would be sending her to a children’s hospital in Lubbock. About 30 min after that update I spoke to a nurse who was taking care of Oli in the ER. Her dad had told the nurse that she usually goes to Dell Children’s hospital in Austin and wondered if they could transfer her there so she’d be closer to home.

The RN got on the phone and very candidly said to me “Look, she’s really, really sick. I’m not sure she would make it all the way to Austin.”

Not make it to Austin? As in she may not survive long enough to travel to Austin?

No, no, no, no, no. That can’t be what she meant. No way.

Did I ask her that question? What do you mean “she may not make it?”

No. No I did not ask that question. Why did I not ask that question? Why did I not hold her hostage on that phone and demand that she tell me exactly what was wrong with my daughter? Clearly I was not getting the full story. I don’t think her dad understood what was going on with Oli and he definitely could not relay and kind of useful medical information to me. It was like I was stuck in a dark room fumbling around, unable to find the light switch, but unwilling to ask the person with a flashlight for help.

I’m sure deep down I knew what she meant, but clearly at this point I was so far into my denial I just said “Ok. Get her to where she needs to be NOW!”

I also tried to rationalize that statement by telling myself that the nurse was just over reacting. I thought they were probably just freaking out because she was a kid, plus she has special needs so they’re just super uncomfortable with her and wanted to get her out of there and somewhere else close, fast.”

I still had no clear idea what was wrong with my daughter. No one was giving me any ideas other than her stomach was distended and hard and she was “really, really sick”. I think it was at this point in time that I began thinking it was a bowel obstruction and sepsis. I felt my own heart rate and blood pressure raise as I text her dad “Did they mention anything about a bowel perforation?” A bowel perforation is a life threatening emergency and is where the contents of the intestine spill out into the abdominal cavity causing massive infection and requiring immediate surgery. A bowel obstruction can ultimately cause a bowel perforation if not treated. He replied “no bowel perforation”. That was good. My heart rate slowed a little and I felt relieved that at least she didn’t have that. At the time I was thinking a perforation would be the worst case scenario. I replied “Then what made them decide to transfer her out rather than just admit her there?” He responded “They didn’t feel like they had the expertise to handle her.”

Yep. I was right. They were just uncomfortable and trying to get her out of their ER. It’s not that bad. My heart rate and blood pressure immediately went back to normal and I continued stringing lights around my trees and blowing up inflatable snowmen and Santa Clauses.

And off they went. They wanted to fly her from Midland to Lubbock but there was no flight transport available. I didn’t know that until later. There are so many things that I didn’t know until later.

My very, very sick little girl then had to ride 2 hours in the back of an ambulance. By the time they got to the ER her heart rate was 200 and her blood pressure was 170/110. Her dad called me when they got to Lubbock and said that nothing was really happening, they were still waiting in a room. I kept thinking that I was missing something. How could the staff see her vital signs and not do anything? I was still so confused. I think that confusion kept me from panicking. Surely if she were that sick and if those numbers were correct the ER staff would be responding to her, not making her sit in an ER room alone with her dad. That can’t be right. What was happening? Maybe I should wrap up outside. I began lugging the rest of the boxes of Christmas decorations back into my garage and traded them for a suitcase.

Finally at 4:53pm I got a text from him saying “Dr. Relves (a pediatric ICU doctor) is handling the business. I’ve got 15 people in here and her heart rate has dropped 50 points. We are having to intubate her to treat.”

Intubate her? Wait, what? We went from a possible virus, a swollen tummy, maybe a hospital admission and then an overreactive nurse all the way to “intubate her”. The room went fuzzy. What was happening?

After I read that last text my brain went into overdrive and I literally just started throwing my toiletries and clothing into a suitcase. I had to get there NOW.

I quickly sent him a response. “If you get to a place where I can be updated by a doctor I’d really appreciate that. I don’t have a clear clinical picture of what is happening.”

What was happening to my sweet girl?

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“Something is wrong with Oli.” Part 1: The beginning

10 Feb

It’s been such a long time since I’ve taken the time to sit down and tried to get my thoughts down on a page. So much has changed in the last nine years since I’ve focused on this blog (which, my teenager tells me “Mom, nobody blogs anymore”). And it has certainly changed drastically in the last three months. Three months ago I was living in a world where, although it was chaotic, was very comfortable and predictable. For the most part, I knew where each day would begin and where it would end. On November 22, 2023 that comfortable, predictable life changed forever.

My kids were in Midland, TX visiting their dad for Thanksgiving break. This was a Wednesday, the day before Thanksgiving, and they had been gone since the previous Friday. At 8:30am that morning I got a phone call from Oli’s dad. “Something is wrong with Oli.” were the first words out of his mouth.

I had just sat down at my computer to start working. Back in 2020 I began working for an Organ Procurement Organization called Texas Organ Sharing Alliance. I was hired as an Organ Recovery Coordinator (ORC) and took care of people and family members of people, who made the incredibly selfless decision to become organ donors. I worked with the donors from the time they were declared brain dead and their organ donation registry went into effect or when families decided to withdraw care on their loved ones and made the decision to give the gift of donation, until we finished in the operating room and the procured organs were on their way to the transplant hospitals and the recipients. Working as an ORC changed my life. The world of organ donation is such a different world and completely different from the type of nursing that I was used to doing. Although we take great care of our donors and they are our main focus as our patients’, we also have other people to think about as we make some difficult decisions on how to manage their care. We also have to think about the potentially eight other people who may receive this person’s organs. It’s also a different side of healthcare. Even though I was working as a nurse in an ICU, I was not an employee of the hospital. I was a member of the hospital’s healthcare team for this person, I was also not, because I was a third party. I got to speak extensively with the families of these patients and really got to know about their experience during this extremely tragic time. I also spoke extensively with the hospital care team and heard a lot about their interpretations of the family dynamics. I say “interpretations” because that’s really all they are. They are viewing that situation through their doctor and nurse lenses, not as a friend or family or confidant, but strictly though the eyes of a professional. I did not know how cloudy those lenses can be. Working as an ORC I got to see the vast discrepancies in these family members experiences and how they are viewed by the healthcare team. What a doctor or nurse may view as controlling, bossy and unreasonable, can really just be a family member who is just trying to manage the situation and juggle all of the healthcare balls that are up in the air of a person lying in an ICU. Trust me, I learned that there are many, many balls to juggle. (I will explain more in detail later.) Although I had all of these past experiences from working as an ORC, on that day, November 22, 2023, I still was not fully prepared to juggle them with the grace and confidence that would be required.

So on that morning I was sitting at my computer on a Teams meeting. I had transitioned out of being an organ recovery coordinator and began working remotely in the quality department about 2 years ago when my mom fell and broke her hip. The fact that I was not working onsite, in the hospital as a nurse full time, was such a blessing. Two years ago when I had to leave the ORC role, I was so disappointed and sad. I loved working as a coordinator. It was fun and so rewarding and I worked with such a great group of people. Little did I know then, this role change would save me. I believe that God puts us in the exact spot that we need to be in and when we need to be there. If I had not had a remote job, if I had not had that job for the length of time that I did, if I did not have the experience that I did, I would not have been able to do what needed to be done for the following months after that Thanksgiving morning.

This was my last picture of Oli before Thanksgiving. Pictured from left to right: Ginger (Oli’s little, not so little anymore, sister), Oli, and Me.

“Something is wrong with Oli”. Although looking back at it now with the luxury of 20/20 hindsight, I want to tell you that my stomach immediately dropped and I just instinctively knew that it was something very, very wrong. That’s not what happened.

“Does she have a sore throat? Ginger and Keely just got over a virus where their throats were really sore.” was my initial response.

He said he didn’t know but he thought it might be serious. Her dad told me that she had not been eating the last two days and had been making strange movements with her mouth. She also had not slept at all the night before and had lain awake, periodically yelling in her bed. He also felt like she was breathing really fast and her heart rate and blood pressure were high. He wanted to know if I thought he should take her to the ER. The ER? I was still confused and didn’t grasp the seriousness of the situation. I still just thought we were dealing with some kind of virus and sore throat. Why would her blood pressure and heart rate be high? Was their machine broken? Alarm bells still were not going off. I think it’s probably a reaction that a lot of people would have with a 16 year old child who never had any serious health problems. However, I still feel shame when I think of that moment.

I should have known.

Oli and I have such an incredible connection. I wake up in the middle of the night sometimes, even when I can’t audibly hear her on the baby monitor, and go downstairs to find her lying awake. It’s like I just know when she needs something. This connection would serve us well in the following months, but I did not seem to be able to tap into this super power on that particular morning.

She’s breathing fast?

“Facetime me so I can look at her breathing” I told him.

We started the video and finally the alarm bells began to ring. She looked horrible. Her color was off and she looked like she was barely conscious.

“Lift up her shirt. I want to see her breathing” I demanded.

When he lifted up her shirt those alarm bells turned into blaring, deafening sirens. Her stomach was absolutely huge. It was way bigger than I’ve ever seen it. Oli does suffer from constipation so I thought maybe she was just having a bad case of constipation. Although it shouldn’t cause the color change. And why did she look so bad, like she couldn’t stay awake? Maybe she was just finally drifting off after being awake for 24hrs. The questions were spinning through my mind followed up swiftly by logical explanations. This couldn’t be serious. Oli’s so healthy. I’m sure there is an easy, non emergency explanation for what is happening here. Serious stuff doesn’t happen to my girl. She’s invincible. I was not panicking. She was going to be fine.

“Yes. I think you should go to the ER. Just to be safe.” 

He hurriedly ended the call, telling me that he would call me as soon as he had any news. He had a way more clear and serious grasp of the situation in that moment.

This is the next picture I would see of my indestructible girl.

To be continued….

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