Saturday, December 31, 2011

A year in pictures.

{Snow!}


{The Cub Scouts pinewood derby}
{Boston in February on Super Bowl Sunday}
{Fun!}
{Girls night in}
{Cub Scouts sleepover at the Museum}
{Baseball season}
{Father- Daughter dance}
{Disney World!}
{Philadelphia Phillies}
{Summer Camp}
{Summer Fun}
{First days of school}
{A trip filled with adventure}
{Christmas is coming}
{Family traditions}
 Farewell 2011...bring it on, 2012! 

Happy New year!

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Saturday, December 24, 2011

The night before.

The night before Christmas. The kids are filled with excitement and fitting in their last good deeds to ensure they are noticed. Wyatt has been looking well the past few days, I do believe the holiday spirit has filled him completely! He's been smiling, interactive and has been distractable from his pain. Though today, while still excited that Christmas is tomorrow, he's more on edge and not feeling as "perky" or as distractable as he was.

I feel like a lot has changed since I posted earlier in the week. Thursday we met with the docs while they decided what meds to start, stop and change, adding in our parental opinion when needed. Lots of changes being made recently...I'll go into more details on that at another time. As I mentioned, the past couple of days we've been riding the high of a boy who has been smiling. An awesome thing to see! Last night he woke up due to the "bad dreams" less than he has in what feels like a very long time. I have renewed hope...maybe we will be able to find a way to get him comfortable with sleeping again!


The same afternoon we were seeing the docs we also picked up boxes of Omegaven. A fatty acid supplement made with fish oils that will be given in place of the intralipids that Wyatt has been receiving. Our hope is that this mixture will improve our boy's liver in one way or another. Its the only option left. An interesting tidbit to the case, Wyatt is starting this "compassionate use" FDA trial at home. Which is not how it would typically be handled. We were originally told that he'd need to be admitted for several days while we began the treatment. But those that were involved and part of Wyatt's team agreed to allow us to start it at home, with the condition that we draw Wyatt's labs and transport them to the hospital daily for the next week. And should anything happen we will contact Dr. R and or take him to the hospital. A plan that is certainly doable!

A wish come true...one more Christmas morning. It's a very merry Christmas, my friends!

Happy Holidays!
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Tuesday, December 20, 2011

4 days, 4 hours and 47 minutes.


4 days, 4 hours, 47 minutes and some odd seconds till Christmas, the ornament on the Christmas tree is telling me. And Wyatt is still home! It's surprised us all, I do believe. He's had a few close calls that led me to believe we'd surely be packing our bags soon, but he somehow avoided any recent slumber parties on 3F. This holiday season has been full of visits from friends and family, a house FULL of caroling teachers, Santa Claus visits and so many cards/surprises in the mail. It's also been full of medical care and emails/phone calls from this Mother to the docs, asking for advice and direction of what to do next for our boy.

Wyatt continues to have the "dreams" that I recently posted of. We started him on an IV medication, Haldol, which was successful in helping him rest for several consecutive hours at a time. But a few short days after starting it he began experiencing extreme reactions to the drug, a painful intense full body Dystonic reaction along with movements resembling Tardive Dyskensia. Side effects that indicated we need to stop the Haldol immediately. Which has left him, once again, startling awake in a panic several times an hour every time he sleeps. The docs are now back to the drawing board and trying their best to come up with a new plan. All the while we try to make-do as parents, reassuring and encouraging him to talk with us. 

Last week we did visit with Dr. R briefly and had a few cultures drawn and taken to the lab (as my last post indicated). I didn't receive a call as quickly as I was expecting, but did eventually get it. Wyatt is/was growing Pseudomonas in his bladder (again) and a possible gram positive from his line, though there was suspicion the positive culture from the line could be a contaminate. We spent the afternoon in Day Med starting antibiotics and redrawing cultures. But was given the opportunity to "escape" back to our home for the remainder of the course of antibiotics. As the Palliative care team has been greatly changing the dose of his pain medication his pain is increasing. We have yet to find adequate pain control, but that's certainly not for a lack of trying. His belly is stretched tightly and distended. His body is retaining fluids. He's now resorted to creating his own extended version of the traditional pain scale; 10 out of 10 being worst pain, "more than 10" meaning even worse than that and "1,000" being the worst for our boy. Last night he was "1,000," which kept us awake for much of the night. And if it wasn't the pain, it was the nightmares.

For obvious reasons this holiday season is very special for our family. I feel blessed beyond words and incredibly grateful for the time we have together. As I care for Wyatt each day, listening to his complaints and seeing how his body is reacting to its own changes, it's amazing to witness- while his pain is increasing, sleep is terrifying and his body failing him, his spirit still shines through. His smile inspires, his laugh is contagious...I can't get enough! I wish for more...


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Tuesday, December 13, 2011

The Reality.

As I sit here now, my home phone and cell phone both sit beside me. I'm waiting for a phone call, prepared to hear that Wyatt has another infection. In some way hoping to hear that the declines we're seeing are due to another and when treated he will return to baseline. I've been trying to convince myself that what we're witnessing is another infection in his body..."It's there.", I've been saying for a couple weeks now. But we haven't found it yet. This morning I'm questioning myself...is it there? Or am I trying to convince myself out of the fact that what we're seeing could very well be my sons body failing to a greater degree on it's own, with no infection.

We met with the docs yesterday afternoon and last night all the emotions that I've been shoving aside hit me hard.

I've been setting goals and time frames (to make it to). Convincing myself that by setting that goal we have to make it, he has to make it. But I can't deny the reality...it's not in my control.




This Holiday season when you feel like giving. Please consider helping others with Mitochondrial disease and donate to The United Mitochondrial Disease Foundation (directly or by purchasing pieces from the girls store.) It may not be in our sons lifetime, but we need a cure.
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Monday, December 12, 2011

Ho! Ho! Ho!

 We had a special surprise visitor during the weekend!





Our family has been touched by so many caring families and individuals this holiday season. Thank you ALL...for the cards and notes of support, the thoughtful gifts, the thousands of prayers and for thinking of our family. We are so thankful to be surrounded by such loving people!
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Tuesday, December 6, 2011

Dreams.

Dreams are so unique to each person, situation and circumstance. I remember a dream that I used to have over and over when I was young, it now seems so silly. It involved a red cartoon shaped car, a giraffe, lion and myself. My dream changed a little each time and eventually disappearing all together.

Very early Friday morning Wyatt awoke startled, panicked and nearly crying again. This is not new to see. It started sometime in October while he was recovering from the fungal infection, happening several times each and every time he'd be sleeping (day or night). Though, we would attempt to talk about it, he'd not respond and we decided not to push him. As time passed we started calling them his "bad dreams" and until recently, he still adamantly refused to talk about what he was feeling. But telling us "they're too scary."

Friday morning as my son lay breathing quickly, tears in his eyes, clearly frightened I urged him to tell me about these scary dreams. Thinking that maybe then they would stop torturing him each time he fell asleep. I began talking in hope that he would be responding...it worked as it always has.

In these "bad dreams", Wyatt shared with us that he's dying. Far from the type of "scary" things that I was envisioning he was dreaming of! Our son is dying in his dreams. He hurts badly and described chest compressions hurting him more, though knowing they were to help. Someone is often trying to help (keep him alive) in one way or another, but causing him more pain in the process. His beloved Dr. R and Dr. M were present in some scenes, but this dream in particular was just him and I at home.

 He became very upset, crying and even vomiting while trying to talk. He shared more and talked of seeing people and children, including Jesus. He elaborated that he's too scared to talk to him, but Jesus was nice.

Our conversation about this dream was detailed. He spoke as if he's fully experiencing each piece just as he would when awake and alert...the incredible pain, intense emotions, sights. Heartbreaking. After awhile it was clear that talking was only escalating his emotions and we needed to calm him down, we gave a dose of versed and I held his hand while telling him that I love him as he relaxed back into a light sleep.

These dreams are certainly nothing like I've ever experienced. It's so hard to watch him thrash around his bed, whimpering. Especially now, knowing that he feels like he's dying at that very moment, in his dreams. Oh, my sweet boy.
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