Monday, November 28, 2011

The difference a year can make.

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.

As we were decorating the Christmas tree Jilly was remembering the past years when all three of the kids would be so happy and excited to decorate for the Holidays. Each running to put an ornament on a branch and back again to pick out another. This year was very different. And the conversation with my spunky little girl while decorating was telling...

"Why can't Wyatt walk anymore, Mommy?"

I began to explain that Wyatt's muscles are extra tired because his body is working really hard in other areas right now. And each time he gets sick and has to be in the hospital, his body and muscles get a little more tired.

"Poor Wyatt" she responded with a frown.


"Yes, Jilly?"

"I miss when he could walk with me. I really liked those days."

"Me too, sweetie." As tears began to sting my eyes. "We all liked those days."

Maggie chose to lay next to Wyatt and watch as we strung lights and hung each ornament. She knows just what her brother misses most and is conscious of making him feel sad about watching her do what he wants to be able to do. Decorating for Christmas would be on his list of favorite things. Wyatt has never lacked excitement...he has always loved the holidays and loves celebrating! He was happy that we were decorating early this year and was excited that we were going a bit more "extravagant." He smiled and clapped as Bryan finished hanging the lights and we turned them on for the first time, creating a festive glow throughout the downstairs of our home.

We all greatly enjoyed having visitors come and go throughout the weekend. It felt good and so normal to visit with friends and family.

As the extended holiday weekend drifted along Wyatt's color began changing. My "Mama radar" has been quietly nudging me through the weekend and today it's getting much louder. These days this motherly feeling just makes me want to it rarely fails me with my boy. It's clear he's not feeling as well as he did days ago, he's hurting (more), we're seeing an increase of blood draining from his belly, his heart rate is staying above his norm and he just has that look that worries me. I debated all afternoon about calling the hospice nurse for an increase of pain meds and/or emailing Dr. R, but in the end decided to make do until we see the nurse tomorrow and waited on emailing the good doc. Hoping that maybe our boy will wake from his versed induced slumber and look/feel better. You never could happen.

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Thursday, November 24, 2011

Thanks on Thanksgiving.

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 decisions, listening to our thoughts, trusting our opinions as parents and loving our son. Though I may say "Thank you" often, it could never express how grateful we are.

High on that same list are the nurses, support staff and friends at the hospital that we frequently spend our time that also assist in caring for our family. Listening when I need to talk, making us all smile with friendly conversations, making me laugh until I cry, quieting the seemingly continuous beeping IV pumps and loving our boy. Today and everyday we are so thankful!

Happy Thanksgiving to all of those that we love!
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Tuesday, November 22, 2011

Home is where the heart is.

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!
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Saturday, November 19, 2011

Saturday- Goodbye PICU

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 look," his skin more discolored indicating a rise in bilirubin levels, yet pale with dark gray circles around his eyes. "The look" is never a good thing. I haven't heard yet what his lab values from this morning look like. Though, we finally got a negative culture from his urine and today he ended his round of antibiotics for the initial line infection. Obtaining the approval for Omegaven is in progress and we're waiting. There have been tweaks made with his pain management, an increase of the Dilaudid and Methadone has been added back in to the daily med schedule.

He's just now waking this morning after a restless night, looking tired and telling us that he hurts. We'll see what today brings.

Again, thank you all for the thoughts, prayers and support. We feel incredibly blessed to be surrounded by such loving people.
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Wednesday, November 16, 2011

Wednesday- PICU

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 much better than he did. Today his face and eyes became a bit puffy, but I think his belly looked less distended. Pain continues to be one of the biggest issues. He's now receiving a continuous rate of Dilaudid along with additional Dilaudid and Valium doses as needed. He is using a Fentanyl patch for pain, but not the continuous drip. His urine cultures are still positive for infection, but seemingly to a lesser degree. This bug in his bladder, Pseudomonas, is proving to be a stubborn one. It's the same that he grew last month, however this time he became infected while already being covered by a range of antibiotics...not a good sign at all. Though, this boy never ceases to amaze me. He's a fighter, no doubt!
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Monday, November 14, 2011

Monday- PICU

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 body to relax a bit. It's so good to see his smile, even if only for very short spurts before needing more pain meds and/or to rest for extended periods. I've now begun to breath again and am setting my focus on getting back to our usual "home" in the hospital with his daily "team" that knows him best and ultimately our actual home.

The process has been started to get this boy of ours on Omegaven and right now we're awaiting approval from the FDA. We're not certain how much it'll help as his liver disease stems not only from the use of TPN but more so from the effects of Mitochondrial disease. But if it should only decrease inflammation and increase his comfort, then that alone will be a success.

At this time we've stopped the methadone as that was thought to be contributing to the arrhythmia's. Though, we haven't written it off completely, there's thoughts of using it as an additional medication to assist in pain control at a lower dose. He's currently getting continuous doses of Fentanyl and Dilaudid, along with additional frequent doses of Dilaudid and Valium as needed. We've increased dosage amounts of his transdermal patches since being here as well.

His BiPap settings have been increased due to CO2 retention. And since being in the PICU one of the respiratory therapists thoughtfully completed a mission for us. We finally found a BiPap mask that allows Wyatt to wear his glasses during the day. This is exciting, he relies on the BiPap machine for day and night now, so being able to wear his glasses is very important!

All are steps being made in the right direction. I'm so happy to be able to share positive news with you all. Thank you for the thoughts, prayers and notes of support. It really does mean so much.
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Saturday, November 12, 2011

Saturday- PICU

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 clothes, cleaned him up and snuggled him in for bedtime. He and I watched a Disney movie together, which we discussed and even jokingly talked about the first time he'd bring a girlfriend home (and I told him I'd be taking pictures...which he didn't love the idea of!). However, today was very different. I feel like we took a few steps back. He's not been awake for more than minutes at a time and even then he's withdrawn and staring. He certainly doesn't look as well as he did yesterday, in my opinion. After culturing his urine last night they did find he's growing another bug and switched around his meds today. His pain is increased, a more constant level of pain. My heart is hurting for my boy and I'd be lying if I said I wasn't scared. There's an amount of frustration within me too, there's no 'easy' choice to be made in his care...we're only able to do the best we can. Yet, that doesn't seem to be enough.

After having a brutal talk with the PICU doctor that was covering the unit last night in which he very frankly asked if we really thought Wyatt would recover fully and "get up and run around again." I responded "No." I know he may never walk again, but I do hope we can get him comfortable enough to enjoy spending time with his family and to smile. I expressed to this doctor that I know my son and I do think he can get through this...last night I had no doubt.

Early this morning I sat watching him sleep, listening to his bipap alarm and thinking back to 7 months ago, when Wyatt was learning and playing baseball. Hitting the balls that were pitched to him, running the bases and just happy to be a part of the team. What I would give to watch him play one more game: Running bases in his over sized blue shirt and big clunky cleats, crouched down in the outfield with the leather glove on his hand waiting to run after a ball. Yet I sit here now, tears leaving streaks down my cheeks, just hoping to be able to share one more holiday season together, one more Christmas morning. For the doctors that didn't know my son before the infections took over his body, I think it's hard for them to imagine him so full of life. I wish they all knew the boy we know, the one that never gives up. I believe in my son, and maybe that won't be enough, but I will never give up on him.

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Thursday, November 10, 2011

Thursday- PICU

Right as this very moment I'm watching the nurse hang another medicine onto Wyatt's IV pole as Wyatt's trying to convince himself that he's awake enough to watch TV (he's not actually awake). Bryan just left briefly to get us dinner for the night and I'm sitting here trying to hold myself together while processing all that happened earlier today. Wyatt's now in the PICU (Pediatric Intensive Care Unit). His heart's abnormal rhythm being the biggest worry. I think for now I need to leave the explanation at that. I understand all that happened, though I'm not certain I'm able to explain it (so that it's at all understandable) at this very mind is swirling with so many thoughts and emotion.

In the calmer portion of the day (this morning) I did have a chance to work on a little project.

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Tuesday, November 8, 2011

We made it!

We officially ended our trip last night at 10:30pm as we arrived to our home hospital, walking directly to the people that were waiting for our arrival all day. We made it!

They drew labs and cultures ASAP and took care of all that had been 'neglected' to be taken care of while we were in the other facility. I don't think I was ever so happy to be walking into this hospital to be admitted as I was last night! The relief that was lifted from my shoulders was huge.

Wyatt's cultures that were drawn here are still positive. He's receiving a transfusion of red blood cells now and resting. His belly is distended and he's been hurting a lot. The continuous and demand doses of Methadone have been increased and he's been receiving an additional bolus dose as needed on top of it all.

We've had a lot of visitors that we were so happy to see today...I think many are just as relieved as we are that we've made it "home."

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Sunday, November 6, 2011

Sunday in Toledo.

Wyatt's cultures grew positive overnight in both lumens of his central line, peripherally (in his blood) as well as in his urine. The PICU attending didn't start off the day well with us this morning, then eventually changed her story (or so she says) after talking with Dr. M, our palliative care doctor from home. But has yet to say a word to or even attempt to examine our son. That's listening with a stethoscope, feeling his belly or even acknowledging that he is in the room with a "hello," "hi" or even "hey." Not one doctor examined our child today. The nurses have been friendly and helpful for which I'm very thankful! This doctor made it clear her mission is to only get our son back "home" to our hospital and nothing more than that. I'm all for getting home to our "home away from home" (especially right now!), however it's not always a clear cut case of throwing antibiotics through this child's body and he gets better. We've seen her twice this morning, once as the nurse pulled her into our room and another after talking with Dr. M who helped to change her outlook on the situation. Though, she may have said her thoughts have changed she didn't follow through. We mentioned to her a couple things we noticed, note worthy concerns, and she looked our direction and asked "What do you want me to do?" At that point in time I very much wanted to respond "Your job." It's one thing to ask what we typically do in this situation and ask how our doctors at home treat such an issue, but it was clear she wasn't referring to those thoughtful questions.

I've been trying to give her the benefit of the doubt (really, I have!)...thinking she just doesn't know what to do and/or she doesn't have experience with the complex nature of Mitochondrial disease, but thinking back on the day it's very hard to believe she's that clueless. Maybe she doesn't know what to do. Fine. But must she act as if she doesn't have a care?

I'm not even sure where to start with explaining how Wyatt's doing. He's sick. It's clear he's sick. He looks it and is acting it. His body is swollen and some areas have continued to swell more throughout the day. His eyes puffy and tears continue streaming down his cheeks. He's hurting badly and has vomited/retched on and off throughout the day. Fever still present, but we have gotten it to break for periods of time. Otherwise, he has two antibiotics running and an antifungal for full coverage. We're (not so patiently) waiting for specifics of what bug he's growing and the susceptibilities. I believe once we get a name and started on the best drug for treatment then we'll be able to come up with a plan to get us to our "home away from home". We really hope it's soon! Thank you to all who have been praying and sending positive thoughts in our direction during our trip and now during the medical detour through Toledo.

Something I haven't had the chance to share (and you're seeing pictures of  now)...prior to the detour, after seeing Mount Rushmore we took our trip a little farther west to Wyatt's second wish - to see "the big geyser," Old Faithful. As Wyatt slept and rested after the exciting day of seeing his first wish, Mount Rushmore, we drove to Yellowstone National Park. Wednesday morning we watched as Old Faithful erupted high into the sky. Wyatt enjoyed it very much, as did we all. It's a moment I will never forget, seeing the slight smile emerge on Wyatt's face and hearing him softly say "cooool" as he watched. We spent the rest of the day driving around to different areas enjoying the fresh blanket of snow covering the park as steam rose from geysers and hot springs, spotting animals of many kinds and taking in the breathtaking scenery.

I'm so happy we did take this trip and thankful to all that helped us make it happen...even if we are currently sitting in Toledo Children's Hospital.
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Toledo Children's Hospital.

Just a quick as we were making our way home from the wish trip a detour and a new destination was made. Wyatt started running a temperatue this afternoon and we are currently sitting in the pediatric ICU of Toledo Children's Hosptal. Cultures have been drawn and antibiotics started.
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Tuesday, November 1, 2011

Mount Rushmore.

I will write a post about our day later, but wanted to share a picture (or three) this morning.
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