Monday, September 30, 2013

Join us in remembering him.


We would like you to gather with us in celebrating the life of our son and brother, Wyatt. We welcome you to come and share with us how Wyatt has touched your life. Even if we have never had the chance to meet before this, please join us in remembering him.

The Funeral service will take place on Friday, October 4th at 11 a.m. from Upper Octorara Presbyterian Church, 1121 Octorara Trail, Parkesburg, PA. Interment will be in the Glen Run Cemetery, Atglen, PA.  Friends may call at the Shivery Funeral Home, 111 Elizabeth Street, Christiana, PA on Thursday evening from 6 to 8 p.m. and again at the church on Friday from 10 a.m. until time of service.  

In lieu of flowers contributions may be made in Wyatt’s memory to the Alfred I. duPont Hospital for Children, 1600 Rockland Road, Wilmington, DE 19805.  shiveryfuneralhome.com



Funeral service will take place at 11 a.m. on Friday, Oct. 4, at Upper Octorara Presbyterian Church, 1121 Octorara Trail, Parkesburg.
Interment will be in the Glen Run Cemetery, Atglen.
Friends may call from 6 to 8 p.m. on Thursday, Oct. 3, at the Shivery Funeral Home, 111 Elizabeth St., Christiana, Pa., and again from 10 a.m. until time of the service on Friday at the church. - See more at: http://www.legacy.com/obituaries/dailylocal/obituary.aspx?n=wyatt-daniel-destephano-superwy&pid=167251765&fhid=28194#fbLoggedOut
Funeral service will take place at 11 a.m. on Friday, Oct. 4, at Upper Octorara Presbyterian Church, 1121 Octorara Trail, Parkesburg.
Interment will be in the Glen Run Cemetery, Atglen.
Friends may call from 6 to 8 p.m. on Thursday, Oct. 3, at the Shivery Funeral Home, 111 Elizabeth St., Christiana, Pa., and again from 10 a.m. until time of the service on Friday at the church. - See more at: http://www.legacy.com/obituaries/dailylocal/obituary.aspx?n=wyatt-daniel-destephano-superwy&pid=167251765&fhid=28194#fbLoggedOut
Print Friendly and PDF

Saturday, September 28, 2013

Surrounded by love.

Surrounded by love, Wyatt took his last breath at 5:42pm on September 27th.

SuperWy
July 23, 2002 - September 27, 2013
Print Friendly and PDF

Friday, September 27, 2013

Dear Wyatt.

Dear Wyatt,

As you lay next to me sleeping I often watch the numbers climb and drop on the pulse-ox through the days and nights. In the wee hours of the morning, I've been listening to the still silence when your breathing stops and the squeaky sound as it begins again. I've been holding your hand as we watched some of your favorite TV shows together this week. Did you know? I'm not certain you have been listening, but I like to think you were. You always loved those reality shows. 

Wy, do you know how proud I am of you? I'm so, so proud. These last (nearly) 12 years have been unbelievable, from the time you were in my belly to now. We make a great team, you and I! We have learned to do some very hard things together. This part is no exception. I'm trying really hard to hold up my part of our team these last weeks. It hasn't been easy trying to decide what the next steps should be. Thank you for being patient with me and my heart, buddy. I'm trying to do what you want and what will be best for you. More than anything else, I want you to be happy, wherever that may be.  

I want you to be so, so happy.

You, my dear boy, hold something so special within your heart. As your body lay in this bed weak and broken beyond repair, you have been defying the odds that have been stacked against you for your entire life each day that your chest still rises and falls. Do you know how awesome you are? There are so many things I miss of you already and there were times in these last weeks that I wondered if what makes you you was still here and laying beside me. It was when I doubted that you would give us a peak, a glimmer, a sign that you are listening. Thank you. 

Yesterday we changed your clothes. Did you know? We haven't changed your clothes in a week and I thought it was probably time do so. You're wearing your Superman shirt now and you are totally playing the part. As I keep running my hand through your hair each day, I can't remember if it's ever been this long before. I kinda like its unruly style. But maybe there is a barber in heaven and he/she can give you that mohawk you would always ask for. I think you should go for it! As I swabbed your mouth last night I thought briefly about brushing your teeth. I know, I know. You hate that, but I am your Mom. It's what I do! But I stopped myself. I suppose God can handle the stinky breath when you get to Heaven.

My super kid, you have fought so hard, so bravely, so determined and so strong. As your breathing changed this morning I know in my heart what it means and I know you are ready. Perhaps these changes are merely you trying to prepare us more gently. Thank you.

Wyatt, I want you to know, if God gave me a line up of boys to pick from and choose to be my son; I would still choose you. I would still choose you out of all the boys in the entire world. You are the most perfect boy for me. I think God knew what he was doing in that moment he paired us together. Being your Mommy has been one of the best things that has ever happened to me. Do you know? The hard things, the scary things, the sad times, the love, the life; I would still choose you.

I will love you forever, Wyatt. I promise you. I will miss you more than I have ever missed anyone before. I will think of you always, talk of you often and tell people about my amazing boy.

You will always be my very favorite superhero, my very favorite boy.

I love you more and more,
Mommy
Print Friendly and PDF

Friday, September 20, 2013

Dear God.


This short clip that I found on my phone is of Wyatt praying. I took this video as he was saying prayers before he went to sleep for the night, it was shortly after we came home from the hospital for the last time in June 2012. I miss hearing his voice. I remember that night he kept thinking of more things to pray for and he'd start each thought like he did this one, with a confident, trusting tone.

Tuesday evening marked three weeks. It's difficult to understand how he's able to keep going, but he is. I feel I can only be thankful for being able to still reach out to touch him and hold his hand and I don't necessarily have to understand the how of it. But the emotional piece of watching the slow deterioration is really hard too. He seems comfortable, I think. 'The king of sleep', as we so affectionately refer to him, is doing what he does, sleeps; and that's okay now. He's unable to talk anymore, he very rarely is awake or able to open his eyes, he's unable to move his body...all of his energy is focused on continuing to breathe. I do think he can hear us when we talk to him sometimes. His O2 sats are beginning to drift lower for longer stretches some days...they sit within a wide range, anywhere from a low of 50 to a brief moment at 90. The numbers are always changing depending on his breathing pattern. He will take 2 - 3 breaths and stop for a period of time...when he stops his numbers drop quickly. They will then climb a few points before dropping again. His CO2 levels are rising each week in response to his weakened respiratory effort. We did make another decrease to his TPN last week and we increased his Lasix dose again this week to help pull more fluid from his lungs. We also adjusted his phenobarb and valium doses since my last update. Decreasing his TPN (fluid) has been hard for me, I can't look at the (now) small bag of fluid without tears stinging my eyes. But these are all things we are doing to keep him comfortable as things change.

SuperWy is indeed super. I don't know how he's doing it, guys. But he is. And it's amazing.

Thank you for the messages, emails and support. As well as the prayers and love that we feel. Thank you to those of you who have been sharing the video for awareness week. Wyatt would be happy about that- I know. He's always told us he wanted to make a difference or "make a change", as he would say.
Print Friendly and PDF

Tuesday, September 17, 2013

Thursday, September 12, 2013

It's quiet.

Our home is quiet. A kind of quiet that we haven't experienced in years.

The ventilator no longer hisses or hums with each inhale and exhale of his breaths. The large high flow concentrator, which we often laughed at how loud and rumbly it is, now silently sits in the corner.

For a week after Wyatt stopped using oxygen we left the concentrator running. It was too quiet without it. It was another, rather obvious, reminder that things were changing. 


Today I moved his ventilator with its attached tubing on its stand with wheels away from the end of his bed and into a corner of an adjacent room. I originally planned to wheel it to the back of the house to free up a little space and electrical outlets. But as I was unplugging all the cords and winding up the tubing I felt myself hesitate in taking it rooms away. I know it will not be turned on and used again, I won't hear the hiss and hum of mechanical breaths anymore. But seeing his multiple masks sitting in the little basket made me stop. Maybe taking it out of the room is too soon. For me.

Wyatt lays next to me sleeping as I sit on the pull out bed with the computer on my lap. Though he lays right beside me where I can reach out and touch him, he feels a million miles away. Every so often he travels back to us for a quick glimpse of the boy we know and love. Those moments hold so much hope within them. Perhaps he's reminding us that he's still there, listening, even when it may feel he's not. 
Print Friendly and PDF

Tuesday, September 10, 2013

We're still here.

Most easily stated, things have been changing. Today marks two weeks since Wyatt has worn oxygen. TWO weeks- he's amazing! The evening he (we) made this huge decision I could see the relief in his eyes. We ate dinner while watching a movie with him that night. He smiled and even laughed a little as we danced to a song at the end of the movie- his face was clear of any tubing for the first time in a very long time and it was okay. He was happy. It would be okay.

When I became a Mother I never imagined I would ever need to make decisions for my child like we've been presented with this last week, month and year. It is somewhat surreal. At times it feels as if we're on autopilot in some ways- just going through the motions until his numbers reach a new low, or something is said or done that makes it feel more real. It's hard to explain.


We made multiple changes to Wyatt's valium, phenobarb and lasix doses last week. We also decreased the amount of fluid he receives in his TPN (IV nutrition) as an effort to keep him more comfortable. His body is overloaded with fluid and as he becomes weaker the fluid is quickly accumulating in his lungs. By decreasing his fluid intake and doubling his lasix doses we hoped to pull out some of the extra fluid that is trapped within him, which could make him more comfortable. His oxygen saturations are dipping lower more frequently, his breathing is not steady or consistent, his heart rate is sitting higher. For nearly a week our super kid has not been waking. Sporadically his eyes may blink as if he could be somewhat aware, but he has been unable to respond to us anymore. We believe he can hear us as his breathing changes when certain people talk to him. And Sunday, as he was struggling to breathe, Maggie snuggled in the bed next to him and the next time I looked to his pulse-ox his oxygen saturations were sitting a little higher and the pattern of his breathing had improved slightly. Yesterday morning he actually opened his eyes a little, enough for us to see them for a few seconds. He worked so hard at trying to communicate with us. He was only able to moan before he was able to make words emerge.

He asked for Sprite.

Yep. He did! I would love to know if he was dreaming or what made him ask for Sprite. It's not a drink he ever drank regularly because the carbonation bothered him. He surely surprised us. Bryan quickly grabbed his keys and told Wyatt it would take him 10 minutes to get to the store and back- with Sprite. By the time Bryan walked out of the house Wyatt's eyes had closed again and he was fast asleep. I don't anticipate that he will be asking again, but we now have a bottle of Sprite if he should.


I can't imagine he could be any closer to dying than this last week. It is likely to happen soon. But the fact that we saw his eyes again and he asked for sprite made me smile.

We couldn't make this stuff up if we tried!

Wyatt was moaning, restless and even agitated at times throughout the rest of the day. It's unclear why he appears so unsettled. I worry that he's scared, but it's difficult to tell for sure. We've been able to utilize the PRN (as needed) doses of some of his meds to calm him down and ease whatever is bothering him.


Thank you so much for continuing to pray. Please keep praying- his comfort is what my prayers are centered around these days. Thank you for all the messages of support, thoughts and prayers.




Today (September 10th) and tomorrow (September 11th) is Wyatt's hospital's annual Help Our Kids Radiothon. We've been listening from home all day today. I'm streaming the radio station through our computer. There is a list of participating radio stations on the webpage- you can tune in too! It runs each day from 6am to 6pm. If you would like to help or ever wondered what you could do for Wyatt and our family, please consider making a donation in honor of Wyatt! We would have never been able to do what we do now without the help from a large number of people at the hospital, our "home away from home".

http://www.nemours.org/givingtonemours/events/2013events/radiothon.html
Print Friendly and PDF

Monday, September 2, 2013

The best Brother ever.

Thursday afternoon, as I was up to my eyeballs in various shades of pink and green tissue paper creating flowers for Jilly's vision of a "Garden Party," Wyatt was awake. He was sitting in the recliner chair. I reminded him that it was Jilly's Birthday and told him I was working on some of the decorations for her party. (It was on Saturday.) I showed him the big pink flowers that she envisioned hanging from the ceiling.

Jilly had a very precise vision for her party. She wanted to "look up and see flowers and look down and see grass." Among other details.


I asked if he thought Jilly would like the decorations and he nodded his head with approval.


Later that evening as I continued my work on the party decor he signaled me over with a soft spoken call, "Moooooooommmmyyyy."

I listened intently and with patience as he tried to carefully think of and then form each word with his mouth. It takes a lot of effort for him to talk and makes it difficult for him to breathe. One word at a time, I was able to figure out he was trying to tell me he wanted to go shopping. One of the last things I expected him to say.

Wyatt really does not like shopping. He never has! We used to walk around the mall when he was a young toddler, before he spoke words, and I could push the stroller just over the threshold of a store and just as my own feet would reach the the threshold behind the stroller he'd begin to whine and screech. I then would pull it back into the mall's hallway out of the store and he'd stop...back in the store we'd go and he'd scream, out of the store and he'd stop. His dislike for shopping started early! In later years, he would always complain, "It's boring." So, consider me surprised when he asked to go now!

"You want to go shopping?" I confirmed with him. He nodded. I then asked him what he wanted to go shopping for. He took a few minutes to slowly respond "Presents."

I caught on to his thought process by this point. So, I asked if he wanted to go shopping for birthday presents. He nodded in agreement. I said "For Jilly?" He nodded again and then responded "For both of us." Such a sibling response that is...one for you, one for me. I smiled and confirmed he wanted to get Jilly a present and also wanted to buy something for himself. "And Maggie?", I questioned. He nodded and gave me a small smile.

After asking him where he wanted to go shopping we were able to help him express that he wanted to go to Toys-R-Us. One of the only stores he actually likes to shop in. 

So, we made a plan to go to Toys-R-Us Friday afternoon to pick out birthday presents from the most thoughtful brother ever. His oxygen saturations were sitting lower Friday and his body was working harder than it was the day before to take breaths...but he said we needed presents. So, then, we needed to go shopping!

Call us crazy. (I won't argue with you!) The look on the hospice nurse's face on Friday morning as I told her of our afternoon plans said it all, really. But if he's willing and wanting- why not?

Jilly hugging the present he picked out for her after unwrapping it.

To give to his little sister for her Birthday he picked out a talking minion, which moves and responds when spoken to, from the movie Despicable Me 2. He also helped Maggie, Bryan and I pick a few other things to give to her too. (And he chose a new movie and a new set of football sheets for himself.)

The best Brother ever! This boy rocks at living life. His motivation also took us to the Drive-in movies to see Despicable Me 2 last night. Since we now had a minion, we needed to see the movie. :)
Print Friendly and PDF

You will know.

For the last 2 years, as we entered into this part of the disease process, I've been told by many that I would know when it was time. When it was time to let him go. When it was time to just be in the minutes, hours, days, weeks we have left with him.

I doubted I would ever know. We've always fought for more time, better quality of life, better pain control, symptom management.

How will I know? How will I be ok with not doing those things anymore? 

In some ways I even felt like it would be giving up. And I never want to give up on him. I greatly doubted that I could ever get to this place of "knowing". It just didn't seem possible after fighting with him and for him for so long.

But it does happen. Friends, you will know when it's time. You will feel it. You won't doubt when the time is right.

I know.

But I was wrong. We're still not giving up. There just comes a time when you know.
Print Friendly and PDF