Thursday, March 26, 2020

When a Loved One is on a Ventilator

In any form of media now, it is common to hear talk of ventilators with the COVID-19 pandemic happening. I have heard stories of COVID-19 patients needing ventilators, hospitals demanding more ventilators, and the race to make more to fill the demand. Ventilators aren't some foreign concept to me, and the frequent mention of them is giving me unpleasant flashbacks.

Perhaps, you have never seen a person on a ventilator. Maybe everything you know about ventilators was observed on Grey's Anatomy. I can tell you that, from my family's experience, nothing can prepare you for the reality of it.

Twice my daughter, Jaycee, has needed ventilator support for a common cold virus called the rhinovirus. Jaycee is medically complex and her multitude of lung and heart problems often result in her needing support in the hospital for illlnesses that others can fight off at home.

Back in 2013, Jaycee was admitted to the ICU for breathing difficulties and pneumonia related to that pesky virus. I remember everything about the night she was placed on a ventilator. She was rocking back and forth in bed, hyped up from multiple breathing treatments, when I implored her to go to sleep after settling into our hospital room around midnight. A few hours later, everything changed suddenly, and I was regretting that my last conversation with Jaycee was begging her to go to sleep.

Jaycee went into septic shock and was later diagnosed with ARDS. She went from needing some oxygen upon admission to needing the ventilator quickly. For 3 weeks, I watched my 7-year-old child breathe with a ventilator.

In 2015, the rhinovirus again created havoc in her lungs and a less sudden need for a ventilator occurred. For a week or so, I sat beside my 9-year-old daughter listening to the hum of the machine breathe in and out for Jaycee.

I am not an expert on ventilators, but I will tell you about what I observed as the mother of a patient from these two events.

I was not prepared for everything that came with the ventilator. Jaycee was sedated while she was intubated. One reason for the sedation was that it prevented her from trying to pull out her breathing tube. With her sedated, we found ourselves in a weird mode where she was there but not really there. We talked to her, reassured her, played music, played her favorite tv shows, and held her hand when she was stable, but it was hard to know what she understood, processed, or heard. Tubes did all of the major work of her body while she slept. There were tubes and wires everywhere! It was a sight that was hard to take in and see.

Then there was the noise from the ventilator. It set me on edge all day and night long. The ventilator wasn't a quiet machine that's portrayed on television. It's noisy. It had a constant hum as it inhaled and exhaled for Jaycee. It alarmed frequently for a few different reasons. If she coughed, I jumped at the alarm it produced. Coughing also typically meant she needed to be suctioned. I hated the sound of the suction and the cough that happened as a result. It makes me cringe thinking about it now. Perhaps, it wouldn't bother anyone else, but it was something that I hated hearing and watching. 

The idea of Jaycee being on a ventilator was simply scary too. In other illnesses, Jaycee had been on oxygen, high-flow nasal cannula, and c-pap support for oxygenation needs. The ventilator is the final stop on the oxygen train. To me, it was worrisome that there was nothing left after the ventilator. In the 2013 event, Jaycee was on the highest support on the ventilator and not sustaining good numbers at different points. Other things were eventually tried (like positioning her on her belly, adding nitric oxide, etc.) which eventually led to improvements. It's scary to see someone struggle to breathe and know that there's nothing else that can be done. 

As for Jaycee, I don't know what the experience was like for her. With her limited communication skills, I don't know what she was feeling or thinking during those times or what she remembers. I know there were moments of discomfort and sadness judging from her body language and tears. 

For her sake, I hope she doesn't remember any of it. I hate to go back to those memories. They aren't pleasant. With all the talk of ventilators lately, I have found myself revisiting some of those memories. I feel for all the people needing them right now and their families. It's not an easy thing to live through. 

There are many opinions out there right now regarding what the public can do to stop the spread of COVID-19. I don't know what you should do, but I know without a doubt what I should do. I never want to see anyone I love on a ventilator again. Therefore, if there are some things I can do to put the odds in our favor, I will gladly do them. 

Be safe out there!
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Saturday, March 21, 2020

21 Things I Love about My Daughter with Trisomy 21

It's March 21st! Happy World Down syndrome Day!

The date 3/21 is World Down syndrome day (WDSD) because it represents the 3 copies of the 21st chromosome that people with Down syndrome have. WDSD matters to me because I love someone with Down syndrome.

Fourteen years ago, I feared Down syndrome and everything it would mean for my daughter, Jaycee, and our family. I felt lost the first couple of years as I processed her diagnosis. I wasted time figuring out how Down syndrome would affect Jaycee. All I really needed to do was simply see her. Jaycee was my daughter. The Down syndrome faded into the background where it should have been all along.

Jaycee is a unique individual who happens to have Down syndrome. She is full of personality, and she gives me reasons to smile daily.

If you haven't had the pleasure of meeting my daughter, then let me tell you some things about her that I absolutely love.

1. She puts things on her head for a laugh. My cup, phone, Bible, and tv remote have all been on her head. Jaycee says, "On my head," as she does it, and then she waits for me to pretend to be mad. I don't know why she started doing this, but it's funny. 

2. "Butt" is her favorite word. It is one of the clearest words she says too. There's worse things to say. 

3. She gives out nicknames that stick. Some of these include: Deer, Daddy Beast, Joel Butt (see number 2), Bubba baby. When I'm mad, everyone refers to me as a mad hippo because of her. 

4. Jaycee has become a savvy clothes shopper. She previously hated shopping in any form. Now, I can't shop for clothes without purchasing something for her. She loves to shop! 

5. Jaycee knows how to use her tone of voice to say 'mom' in a frustrated way. It's funny the things she gets annoyed with that cause this tone to come from her. If I drop something in another room, she will yell out, "Mom!" If I sneeze or trip or make any mistake, she catches it and yells, "Mom!" 

6. She has a "princess pose" for pictures. The pose consists of one hand on her hip and one hand behind her head. 

7. Her memory for some things is completely amazing. She recalls being in certain resturants with people months later. I don't know why or how these memories stay, but they do. 

8. Jaycee has a specific way she wants her hair. Right now, she likes to have a pony tail with a JoJo bow. Her second favorite look is a flower clip in her hair. 

9. Jaycee loves the band Skillet. She hands me the ipod in my van and asks for "illet."

10. She loves Baby Shark too. Skillet and Baby Shark are both pretty important even if they are opposites. These interests show that she has age appropriate ones as well as some developmentally lower interests. 

11. She loves make-up. This developed all on her own, since I don't wear it. She owns more lip gloss, eye shadow, and make-up brushes than I ever have. 

12. Even when things are hard, she carries on. Hospital stays, increases in medications, surgeries, or times of being home bound, she powers through them all. She may have some fears and short periods of sadness, but Jaycee goes through adverse situations like a true champion. 

13. She says the sweetest prayers. Jaycee utters out a mixture of babbles and real words to talk to God every day. She prays for some of her favorite people in these prayers. I feel honored when I am mentioned.  

14. She cares about her friends. She asks about them and is concerned about them if they get hurt. 

15. Jaycee loves to video chat with family and friends. With her limited speech, video chatting is important for the listener to see her gestures and signs. 
16. A few years ago, Jaycee decided she wanted to wear dresses to church. Nearly every Sunday, Jaycee insists on wearing a dress to church. 

17. Jaycee is fearless about amusement rides. While I scream on a coaster, she is all smiles and laughs. Because of her heart condition, she hasn't done the big coasters, but I am sure she would enjoy them if given the opportunity. 

18. Jaycee loves to rub on my fingernails. She takes her hand and gently grazes her fingers across the edge of my fingernails. She has done this since she was a toddler. 

19. My daughter loves to sing. Most people can't make out any of the words that she is saying, but I love to hear her sing. A few years ago, Jaycee was silent, so her singing is such a gift. 

20. Jaycee thrives on routine. This can be good and bad. Honestly speaking, I thrive on routines as well. She gets this trait from her mom. 

21. She loves like no one I know. Seriously, she is the most loving and accepting person. Her loving nature challenges me to do better. I am grateful that I get to be around her love everyday. There are plenty of hugs and kisses in our home. 

On World Down syndrome day, I celebrate my daughter, her life, and the wonderful person that she is. I hope her Down syndrome fades away for other people too, and they can see her. 

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Monday, March 9, 2020

Things I Don't Know about my Daughter

I recently returned home from a lovely 10-day vacation with my family and parents. We had a wonderful time in Florida and enjoyed spending time together.

During one of our meals at a restaurant, there was a heated discussion about bacon. Bacon is pretty important, especially if you are doing the Keto diet.

I like my bacon thoroughly cooked. My husband says I eat it burnt, but I disagree. I don't like it blackened, but I do like it hard and crunchy. On the other hand, my husband eats it chewy and soft. I  struggle to cook bacon for him as I feel I am serving it to him partially raw. He hates "overcooking" the bacon for me. This is one of the many trials of our marriage.

During our discussion on the proper way to eat and cook bacon, my son chimed in regarding his preference. It appears he likes bacon cooked somewhere between my husband and I's crispness.

Then it hit me. I have no idea how Jaycee, my 14 year with Down syndrome and language delays, likes her bacon. Jaycee is a great eater, so she will eat bacon nearly any way it is presented. Yet, I wonder what her preference is. I cook her bacon the way I like it, but maybe she hates it that way. It's hard to know exactly her thoughts on this important subject.

On the last night of our vacation, there was another conversation where Jaycee's contribution was missing. We reflected on all of highs of our trip and debated about which Disney park provided the most enjoyment. We talked about the different rides that were our favorites. Jaycee, with her limited speech, listened to us and smiled.

I asked Jaycee what her favorite part of the vacation was. Her response was, "Gabby."

Her answer didn't make sense because Gabby is her cousin who wasn't even on our trip. Questions are generally hard for Jaycee to comprehend and answer. She does better with questions that require a yes/no response or questions that contain specific choices. I tried that tactic with her but still got no good answer.

I don't know what her favorite part of the vacation was. Who knows if it was meeting the princesses, walking on the beach, or riding coasters? She seemed pretty excited to meet Gaston and has watched the video of their meeting a few times. Was that her favorite part?

Despite these unknowns, there are plenty of things I do know about Jaycee. She shows me her preferences by her actions, behaviors, and words/signs. She asks to call her cousin Gabby like any other teenager. When I gave her some options for her birthday lunch, she answered "spaghetti" consistently. She tells me if she wants to go home or if she doesn't want to go to school. We can talk to each other about many subjects.

I'm thankful for the things she can communicate. I appreciate what we do have in this life. Sometimes, I do wish there was more. There are things missing from our conversations, and certain times (like vacations) remind me of the gaps. Perhaps one day, the gaps will be fewer and fewer.

Maybe in the future Jaycee will pick up her perfectly cooked, nearly burnt bacon and tell me it's horrible. That would be a really amazing day!
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