Tag Archives: special needs children

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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Chasing Rainbows and Running from Bombs

16 Apr

I’ve been thinking about writing this post since I heard about Gavin’s (Chasing Rainbows)death. He was 5 1/2 years old. He was a special needs child with special gifts and special parents and a special brother. If you haven’t read his mom’s blog yet or visited her facebook page, please do. You will be changed forever.

I’m sure I’m like most parents of special needs kids when hearing that one of our family has passed. I think, “What if that was my Oli? What if it was me taking pictures of my sweet girl as they wheeled her down the hall for the last time? What it was me giving her a bath and a kiss for the very last time?”

And then I sob and I cry and my heart breaks for this mother all over again.

I like to think of them as family because we are all in this together. Gathering inspiration and support, raising awareness about differences and forging our way trying to make an impact and an impression on the world that our kids are just like everyone’s else’s kids. Just a little bit different in more obvious ways.

I think that Gavin and his parents did that in his few short years on this Earth. He did the impossible. He made a difference. And he did it with his life and his death. His mother and father also achieved a rarely attained goal. They have changed the world.. They have changed the world by sharing their story with us. Sharing their heart ache and their pain. Sharing their courage and strength with honest words and tear stained faces. They have taken an unimaginable, horribly sad event and maintained dignity and grace while the earth shakes beneath their feet. They have made selfless choices and decided that despite their grief and darkness they have chosen to give another family light. They tried to donate Gavin’s organs.

This was not to be however.

Part of his liver was unusable so it rendered the entire organ unusable. His corneas were not able to be transplanted either. Rather than be shattered by this one positive that his family was clinging to, his mother maintained her poise and managed to never lose sight of what life is really all about.

Living life on life’s terms.

She talks about giving gifts and expecting nothing in return. Because that’s what a gift really is. And if it doesn’t work out? Then it doesn’t work out. They tried. I will stop there because I REALLY encourage you to visit her blog and read her story. Like I said…it will change you.

So I’ve been thinking about this family. Gavin, his mother Kate, his dad Ed and his brother Brian. This family that I have never met, never spoken to, never “met” on facebook or on her blog. I know nothing about them other than what I have read and what others have posted about them. I don’t know them and yet I’ve been praying for this little boy whose pictures I can’t stop looking at and whose sweet little face that I can’t seem to get out of my head. And then I ask the obvious question.

Why?

Why do these things happen? Why did such a small, defenseless, amazing little boy have to lose his battle so early on. Why? He has touched so many people. He has given so many people strength and courage and taught others to continue on in the face of difficult situations, in spite of labels and disabilities and the unknown. He just continued on. He lived and he loved just like so many other little 5 year old boys. Except that he wasn’t. He was Gavin. And for some reason people were drawn to this little guy and his story. They were drawn to the way that he lived his life.

Just like people are drawn to my Oli.

I don’t know why these things happen. I don’t know why people are drawn to these little people who never even utter a word. I think it’s because of what I stated above. It’s because of the way that they live their lives. Just like my Oli, Gavin showed courage in fearful situations and strength where others would be weak. He celebrated accomplishments with the ferocity of an Olympic athlete. Because life is not always easy for our kids, but they carry on. The carry on despite slow progress and others telling them what they can and cannot do. They carry on and thrive and progress and amaze people every day. They reward us and surprise us every single day. They make possible the impossible.

And I don’t know why Gavin had to die. But I do know that although he is gone, he will NEVER be forgotten. I know that people all over the world are fulfilling his mothers wish for random acts of kindness in Gavin’s name. I know that he had a purpose and his purpose is to continue to be an inspiration. Continue to be that light in the darkness.

Little Gavin lost his life yesterday and then the bombings at the Boston Marathon happened. Another little boy died. A little boy who also has a name. His name was Richard and he was only 8 years old. I thought, “I wonder if this family has seen this? I wonder if they know that another little boy died today?” And I can’t make sense of that either? I can’t make sense of the fact that Gavin got sick and died, but Richard wasn’t sick at all. He didn’t get an infection or have cancer. He didn’t get into a car accident or anything else. His life was taken. Taken, on purpose, by another human being.

How do you go on after that? I cannot imagine either one happening, but the rage and the anger that I would feel if someone else stole my child from me…would never be forgotten. How do you see the positive in that? How do you get to the light?

I don’t know. I’m sure that Richard’s family knows though. I’m sure that he touched the world in his own way. I hope that we learn more about this little guy in the days to come. Because I need to know that a life was not lost without purpose. I need to know that this child will be remembered and that people will not forget what we lost yesterday.

I don’t know who would do such a thing. I’m not even going to venture a guess. It has happened and they will catch who is responsible for it. That…I am sure of. Rather that feed more hate with hate, can we remember the people who lost their lives yesterday? Richard in Boston and little Gavin. Can we keep them in our hearts and heal without spewing more violence?

I’m not saying not to be angry. Of course not. But, can we remember what really matters? Can we remember the kids and the friends, and the moms and dads, aunts and uncles, brothers and sisters, who will never see their loved one again. Can we honor their memory and be kind to one another? Can we stop the hatred and stop reacting with fear? Maybe just for a day. Do something nice for someone else. Do something in Gavin’s name. Do something with love rather than hate. How many times are we angry with someone and cannot WAIT to give them a piece of our mind? How many times do we take that same fire in our hearts and tell someone else that we love them, or appreciate them? How many times do we close our mouths to keep the vicious words from pouring forth? How many times do we open our hears and allow others to see our vulnerability. How many times do people see our love?

Never did words ring truer to me “Be the change that you want to see in the world.”

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