Friday, June 29, 2012

The Birthday party

Wyatt greatly enjoyed his birthday party on Sunday. Everything went well and fell into place nicely. It was a zoo themed party, animals included. We're so thankful that the Philadelphia Zoo's "Zoo on wheels" team was able to be here on such short notice. It worked out beautifully!

{The birthday boy}

{Philadelphia Zoo}
{Face painting for all..adults included}




{Fidel the lizard}

{Dewey the owl}
{Camilla the Armadillo}

{Make a wish...}
{Love, Jilly}
{This smile says it all}


Things haven't changed too much since I last updated. The tics and seizure like movements have become more frequent, but the hallucinations have been less intense the last couple days. He has had good days, when he's more comfortable, alert and engaging...which is uplifting. We're holding him close, enjoying the moments and taking it one day at a time.

Thank you for your continued thoughts, prayers and notes of support. 
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Saturday, June 23, 2012

How do we prepare to say goodbye?

My head understands, though my heart doesn't want to believe it. That's where I'm at, at the moment.

We've decided, in light of the circumstances, tomorrow we will celebrate Wyatt's 10th birthday early. He knows about the party and is looking forward to it. He is not aware that the timing is earlier than his actual birthday.

His neurological status is changing, he's begun to hallucinate multiple times a day and is agitated and frightened during the episodes. We're out of "tricks" and we have done, or are doing, all that can be done for our sweet boy. It could be days, it could be weeks. How do we prepare to say goodbye to our little boy? I don't know how to do this.

He's my boy who loves comfy pillows and stuffed friends. My boy who likes to watch the Ellen show and has often danced along at home as she dances through the crowd. My boy who can keep a sense of humor through everything and has never once asked "why me?" Who loves a good pillow fight, watching movies together and the smell of food. My boy who learned he loves to play baseball and being part of a team. Who loves Disney World and to watch and listen to people scream as loud as they can on fast rides. My boy who enjoys watching The Amazing Race, Wipeout, Fear Factor and America's Got Talent. Who when asked for his one wish, wished to go "camping" in an RV and to see the country. My boy who looks forward to being married and loves a good movie with a happy ending. Who prays each night, for his friends. My boy who says "Good Night, Mommy. I love you. See you in the morning." over and over and over again because he doesn't remember he already said it at least 4 times. My boy who is mighty and awesome. He's my boy...my sweet, sweet boy. 

It feels surreal.




We feel your prayers, the thoughts and support. Thank you.
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Wednesday, June 20, 2012

Comments from Wyatt

Comments from Wyatt as we lay snuggled in bed this evening-

"You're my favorite Mommy." to which I replied, "And you're my very favorite boy."

His hands folded together at his chest, "God, please help everyone everywhere. And take care of yourself too."

"And God, please help my parents with all the medicines." (Daddy was pushing/hooking up a couple meds at the time.)

"PS- and let my family not be scared. Amen."

"Mommy, you're amazing too."

"Buckle up!" to which we pretended to buckle up.
"Where are we going, Wyatt?" I asked.
"We're going to room 8!"
"Oh, who's driving?" I said.
"Nurse Maggie and nurse Jason. We're going to room 8. I like that room! Oh, Dr. R is there now."

"I love you. Will you stay with me all night, Mommy?"
"I love you too, and yes, I'll sleep right here all night long." I responded.
"But you can get up to pee." he says,
"Ok, good. Thank you." I said smiling.
(He also gave Daddy permission to get up to pee, as long as he laid back down after.)


He couldn't be any sweeter and I couldn't love him any more than I already do. <3
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Update- Wednesday

I want to fully update you all, but am unable at the moment. We were in the hospital, but arrived home via ambulance transport yesterday afternoon. Things are not good and my worst fear is becoming reality. Please pray for comfort, peace and for God to hold us all tightly right now. I will update more soon.
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Saturday, June 16, 2012

One day at a time.

These past weeks our emotions have been thrown every which direction. I get a surge of hope each time he opens his eyes, talks to us and responds appropriately. And I come spiraling back down as his body greatly struggles with yet another task that he needs it to perform. I don't really know where we "stand", but it's certainly not on solid ground, that we do know. The latter part of this week we've seen him wake for longer stretches, interested in watching TV and at one point even asking to play a game.

Since I've last updated we've watched as our boy's body has become very, very swollen. His urine output has dropped significantly despite the use of lasix. And I was suspecting his billirubin was also on the rise as we could see the color of his eyes and skin change slightly...and I was correct. Petechiae began to cover his face and he started bleeding (a lot) from his nose and mouth. He was scheduled to visit the Daymed area of the hospital for another blood transfusion the same morning he began bleeding profusely. After struggling to do so, we eventually got the bleeding to slow and stop. We arrived in daymed and were not too surprised to hear he also needed platelets and albumin in addition to the red blood cells he was getting that day. He looked terrible.

He got blood on Tuesday and the following morning we returned for the platelets. He's scheduled to be getting albumin on Monday in Daymed. We were offered the chance to stay and 'fill him up', so to speak. And I, being exhausted and stressed, was ready to throw in the towel and stay. But Bryan, being the voice of reason, pointed out that Wyatt would want to be at home even if he's only sleeping. And he was absolutely right. While we were there for platelets he also had a follow-up chest xray, which didn't show much improvement from the last. In actuality, it showed that his left lung has collapsed a little more. He's relying on the bipap to take the breaths and breathe for him, but within the last few days I've seen a couple breaths that he's initiated. That's an encouraging sign right now, to me.

Since Thursday the seizures and twisting/circling movements have returned. Along with increased complaints of pain and coughing (and the need for suctioning.) We'll see how he does in the next couple days and go from there. Minute by minute, one day at a time. He's my hero, our very own Super Boy...


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Saturday, June 9, 2012

He's fighting.

Wyatt was unresponsive for very long periods of time this week. On Tuesday evening Bryan and I transferred his limp body to the pull out couch across the room from his bed where I laid next to him, holding his hand and stroking his thick hair through the nights and some of the days this week. He had an EEG on Wednesday where the neurologist expressed his worry and concern. And later a conversation with our beloved Dr. R.

This is so, so hard.

But there are no words to convey the hope in my heart as I lay next to my sweet boy, crying as he lay limp and unresponsive for so many hours on end, to then watch as he moved his hand slightly. And after a little encouragement, to see his beautiful eyes open, focused and quietly responding, "I love you too." There are no words...

We're doing all that we can for him. I need to know we tried all that we can. I'm so thankful for a doctor who understands and is in agreement of this. We switched to Micafungin to combat the fungus, we increased his bipap setting (the ipap) after seeing the results of his blood gas, we're weaning his valium doses to try to increase his respiratory drive and in an effort to "wake him up" a little. He has woken up a little since decreasing the valium, though for short periods of time, but it's something that we view as significant. He's very sick, we all know. But he's fighting. It's all he knows, to fight, since the day he was born.

This is a very hard place to be in, it's uncomfortable and painful, but we're trying to make the choices that feel right to us.

Please know, your prayers and support are greatly appreciated. Please continue to pray for our sweet boy.
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Tuesday, June 5, 2012

Please pray.

I was hoping that I could come here and tell you of another great turn around in our boy. But unfortunately, I can not today. Wyatt continues on the path of decline and we don't really know why. He has fluid in his lungs, making it difficult to breath. His most recent x-ray shows another "possible pneumonia" and or atelectasis. We've run through back to back courses of ceftriaxone, levaquin and are starting a third round with azithromycin. And we increased his lasix last week, hoping to pull off the extra fluid that is hiding out. It could solely be "disease progression", though I'm not entirely convinced. Certainly it's probable that the mitochondrial disease itself has progressed, but we feel as if something triggered it to do so so rapidly. His hands and feet are at times as cold as ice packs and discolored. His voice soft and sometimes only a faint whisper is able to emerge. He hurts and has been sleeping for long periods of time. He has no memory and is confused, but is mild and sweet as can be. He's a very sick little boy. Friends, please continue to pray with us...for us.

I woke Saturday morning with a feeling of panic in my heart. There is so much I want to do with him, to show, to teach him. "Not yet. I'm not ready for this yet.", I keep thinking. We took family pictures that afternoon...I will never have enough pictures. And I'm glad we did, because Sunday he was struggling more and wouldn't have tolerated the few steps out onto our front porch as well as he did that day. We were even able to catch his smile in a few of the pictures, which isn't in abundance of late and makes those pictures perfect.

We're at home, not in the hospital. Wyatt wants to be at home. And we're equipped to do everything here that they would be doing for him there. I may feel more comfortable to be in the "safety" of our little corner of the hospital, his doctors near and other eyes watching him closely. But is not what our sweet boy wants.

I can't fully wrap my head around what's happening right now. Partly because we don't know what's happening. The thought that keeps coming back to me within the last week has been, "We're losing him." This has been my biggest fear within the last 10 years. And here I am, holding his hand and watching it unfold. Though, I keep thinking back to last fall when we were in a similar position, "We've done it once, we can do it again!" But I know his body is not functioning the same as it was even 7 months ago.

We saw Wy's favorite guy at the hospital yesterday, Dr. R. And as he entered the room and sat on his little chair with wheels, Wyatt slowly turned his head in his direction and whispered "I don't feel good." We looked at labs, at his x-ray, brainstorming things that could be happening to cause what we're seeing. Months ago I never thought we'd ever wish for an infection that could be treated, until now. How things have changed...


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