The House of DeStephano

Summing up the week.

2012-02-09T20:09:00.001-05:00

These pictures sum up much of the week in a lot of ways. Wyatt's lost the "spunk" that we were relishing in last week. Boo! He feels as he looks. Not terribly "bad", but not "good" either. His body has been stressed, leaving him floppy and tired.

Watching him smile.

2012-01-31T19:50:00.003-05:00

Today, while the girls were both at school, Wyatt and I had a quiet day playing and talking. We talked about how he's feeling, what's uncomfortable and what's feeling better. He was sitting in his wheelchair for a bit this afternoon playing a Disney Cars game on the Wii, an activity that he used to love prior to September/October, and today asked to play again for the first time. We've seemed to

Blasting right out of there.

2012-01-26T22:30:00.000-05:00

First- we arrived home late last evening, infused all his needed meds and settled in. Today has been a day of re-adjusting to our daily routines and catching the Hospice team up with changes. But next let me tell you about yesterday- Wyatt experienced a very special moment that he was able to share with many of our friends at the hospital. The hospital is currently under construction as they

Going home.

2012-01-25T08:11:00.003-05:00

Ah, leaving the hospital and going home. A happy time filled with a flurry of activity and coordination among many. There is a lot that goes into getting this boy of mine back to his home. It made me smile when the resident, naive to the complexities of Wyatt, talked of possibly discharging him at the end of the day after they make sure he's doing "ok." Oh, how it would be nice if we were only

An update.

2012-01-24T07:14:00.003-05:00

Where to begin..? Lets start with the surgery, Wyatt's new supra pubic cath is draining well. He's dealing with pain left over from the procedure, but also his "boy parts" are swollen and causing a large amount of discomfort. This morning the swelling looks to have decreased since last night. But he's been awake since 4am this morning crying and complaining of an increase of pain in/around his

Post Surgery update.

2012-01-21T10:26:00.001-05:00

The procedure itself went as well as expected. There was miscommunication surrounding the staff, which added a layer of stress that we didn't particularly need, but we're now just happy it's over with and moving on to recovery. The surgeon wasn't able to place the new catheter as high on Wyatt's belly as he had hoped due to swelling/edema throughout his abdomen, but this placement should be

Today's Agenda.

2012-01-20T08:06:00.000-05:00

The boy's name is on the OR schedule for this morning to have the suprapubic catheter placed. I've heard three different times from different people, but we figure it will be some time between 9-11am. Wyatt's very scared. He's been awake all morning and has been having nightmares through the night. He has great anxiety over procedures and the surgical area of the hospital. If you would, please

A change of plans.

2012-01-18T08:24:00.005-05:00

As of yesterday Wyatt was put on the OR schedule for 11am today and everyone was preparing for their roles. By evening surgery had been postponed. Wyatt's now growing bacteria in his urine which brought the surgical plans to a halt. He's been put on an additional antibiotic and we're waiting for this new bug to take a hike. Hopefully he'll be put back on the schedule for Friday. Yesterday

Just waiting.

2012-01-17T11:43:00.000-05:00

This morning seems to be moving quickly, yet not much has happened (not a bad thing, just a quiet morning). Wyatt is still sleeping, the doctors rounded and the nurse has been popping in and out as needed. The plan for today is to keep doing what we're doing. The antibiotics appear to be doing their job and this infection hasn't made Wyatt sick sick, thankfully. It appears we caught it early

7 Weeks.

2012-01-16T08:54:00.002-05:00

7 weeks- the amount of time Wyatt was home without needing to be admitted to the hospital. Longer than most of us thought it would be, truthfully! He was admitted via the emergency department yesterday, due to a line infection. Overall he's doing about the same as he had been. Thursday was encouraging as he had a good day, pain was more tolerable. But was followed with days of increased pain and

New wheels and the Muppets.

2012-01-10T20:11:00.000-05:00

I often want to type out blog posts of events, pictures or silly things that I know others would enjoy with us, but recently those posts quickly get thrown aside as something else happens that takes priority or throws us for a loop. "The plans" seem to be changing every day anymore. But tonight I want to quickly share before getting side tracked with some new (or different) issue that needs my

Never Lose Hope.

2012-01-08T13:53:00.001-05:00

This week has been full of emotion for me, not much unlike other weeks recently, I guess. But this week seemed a little more poignant. Since my last actual update on Wyatt we've had positive improvements, concerning sights and areas that continue to leave us feeling weary. Positive improvements- we started Omegaven December 23rd. Since that day Wyatt's billirubin levels have dropped a great deal

A year in pictures.

2011-12-31T21:52:00.002-05:00

{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.

The night before.

2011-12-24T23:27:00.000-05:00

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

4 days, 4 hours and 47 minutes.

2011-12-20T19:26:00.002-05:00

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

The Reality.

2011-12-13T10:31:00.003-05:00

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

Ho! Ho! Ho!

2011-12-12T08:42:00.000-05:00

We had a special surprise visitor during the weekend! Make a video - it's fun, easy and free! www.onetruemedia.com 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!

Dreams.

2011-12-06T13:53:00.004-05:00

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

The difference a year can make.

2011-11-28T21:12:00.006-05:00

Our Thanksgiving holiday was relaxed and fairly quiet. Exactly what we needed it to be. This week there were a lot of people asking the question "How are you?" and "How's Wyatt doing?" and I replied "Ok" most of the time, but to be honest I have no idea how we're all really doing. I do know we're all hurting in one way or another, as we're watching our son (and Brother) slip away piece by piece.

Thanks on Thanksgiving.

2011-11-24T19:22:00.002-05:00

It’s in the quiet moments, reading a book together in their PJ’s on Thanksgiving day morning, that these children will cherish forever. This Thanksgiving we have a lot to be thankful for. But nearing the top of our list are the doctors that help to care for our son. An email or phone call away at all times, talking us through various experiences, standing by us through the most difficult

Home is where the heart is.

2011-11-22T20:41:00.001-05:00

Home is where the heart (and our boy) is. Yep, it's true! We all arrived home this afternoon. The carefully thought out cocktail of pain meds given just before and after we transferred him into his wheelchair worked to get him home and sleeping in his own bed. This Thanksgiving we have much to be thankful for!

Saturday- Goodbye PICU

2011-11-19T10:07:00.000-05:00

If you're on facebook with me you may have noticed an exciting update that I posted last night. It's true! We were transferred out of the PICU last night and back to our "home" unit, same room even. Wyatt is doing ok. He had an extended intense pain episode Thursday evening that took a lot out of him. He slept for the majority of the day yesterday and as the day wore on we began noticing "the

Wednesday- PICU

2011-11-16T20:15:00.000-05:00

Wyatt is currently snuggled under his new soft, fleecy Mario Brothers blanket, his arm wrapped around his best buddy "Big Bear" and a turtle pillow pet placed under his head. He just fell asleep after softly crying that he hurt "so bad." He's continued to have more extended periods that he's awake, interacting, smiling and today has even played the iPad for a short while. Visually, he looks

Monday- PICU

2011-11-14T19:57:00.001-05:00

As I sit here now Wyatt is awake and just finished casting "spells" with his Harry Potter wand on a couple special friends (and Doc). God is so good! We're making progress and the mood is definitely lighter all around. Last night he really woke up for the first time, talking and even smiling at Bryan and my awful jokes. The infections appear to be under control and in turn allowing our boy's

Saturday- PICU

2011-11-12T22:46:00.002-05:00

I haven't updated because I'm not even sure what to say. Yesterday Wyatt had times that he appeared to be doing/looking "better." A little more interactive at times, talking to us when awake and pulling out that ornery side a bit. But there were also the extended times he was in intense pain, screaming and shaking all over. Though, after the pain was brought back under control, we changed his