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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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.

"Mommy..."

"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 cry...as 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 know...it 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 moment...my 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 correct..no 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 note...today 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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Monday, October 31, 2011

South Dakota.




Last night we set up camp in South Dakota. That's right, my friends...we made it! We have the entire campground to ourselves. It's pretty funny, because who else in their right mind would be camping at the end of  October! The owners of the camp are very nice and have brought the kids a big bag of trick or treat candy. We've watched as deer roamed the camp grounds and the kids had the chance to watch a movie while settling in for the night last night.


I think we're getting the hang of this whole camping idea. Minus the first few nights of mishaps...including the littlest locking us out of the bathroom for 14 hours!


Then there was yesterday morning as Maggie woke vomiting with a 102 temperature, leaving us cleaning up a mess throughout the RV and wiping all that I could with Chlorox wipes. And then turning around to see Wyatt's G-tube draining a sizable amount of blood (a couple hundred ml's in total), which would explain why he had been complaining even more that his belly was hurting badly. We watched him throughout the day and the bleeding tapered off and by evening stopped. Maggie started to feel better that afternoon and now looks as if she's feeling fine. Wyatt's been uncomfortable and his body is struggling to regulate its temperature. He's gone between sweat soaking his hair, clothing and rolling down his cheeks to being covered with numerous blankets complaining of being cold. He can't seem to find a comfortable spot. He's been looking a little rough and it's clear his body is struggling. Though, this morning as he's waking now I do think his coloring is a little better. (!!) He put out a very small amount of bile from his Jtube yesterday for the first time in weeks and a little more bile from his Gtube than we've seen in a long time, as well.


We all enjoyed the afternoon yesterday driving through a place called Bear Country USA looking for and watching all the animals as they would walk right up to the RV.


This morning will be a special day seeing a monument that our boy has been waiting to see. And I'll be sure to have pictures.
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Friday, October 28, 2011

DeStephanos on the move.

Since leaving our home and starting on our trip to the western states of America there has been a lot of fun but some moments that left a little to be desired (though we did expect such times in our trip.) I think I'll save the "bloopers" for a fun post as we return home.

Wyatt's hanging in there with all the driving and movement. We brought along all of his pillows and such to help with positioning and he quickly found a favorite spot in the RV where he lays and is able to see out one of the many large windows. He's hurting and his body is understandably tired. Throughout the night last night I watched and could feel his body experiencing seizure like activity and this morning he woke looking more jaundiced than he already had been. Today we did break out the extra methadone doses that we have on hand for when the pain is particularly intense. Which allowed his body to relax and rest.

The girls are having fun with the freedom that riding in an RV allows. Maggie has been doing a lot of reading and Jilly has been doing a LOT of talking!

At the moment we're preparing to lay our heads upon our pillows and rest our eyes for the night. Tomorrow is another day of driving. But we're getting close!

{Wyatt seeing the inside of the RV for the first time}

{The DeStephanos are on the move.}




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Wednesday, October 26, 2011

Make-A-Wish

The Make-A-Wish foundation is in the business of granting wishes. This generous organization gives children with life-threatening medical conditions the opportunity to "make a wish." The wish can be anything...meeting a famous person, a special vacation, to be something and/or someone for a day, a newly decorated bedroom, a computer or video gaming system. Each wish unique and special, just like the children who's imagination dreams of them.


If you remember, I mentioned recently that we met with our local Make-A-Wish chapter and Wyatt was given the chance to make his very own wish. Wyatt wished to "go in an RV across the country to see Mount Rushmore, the geyser (Old Faithful) and the Grand Canyon." A BIG wish! And one that proved to be very important to our boy.

At first the wish granting organization was a bit hesitant about Wy's large wish and unsure just how it would be possible. So, we asked Wyatt exactly what was most important about the trip and what he wished to do and/or see the very most. He replied that he wanted to travel in the RV and the one place he wanted to see the most was Mount Rushmore. After narrowing down his wishes, the wish granters started the process of pulling it all together...


and this morning a large RV was delivered to our home. Wyatt smiled as the big RV pulled up in front of our home and began backing into the driveway. Tomorrow the DeStephano's are hitting the open road...we'll begin driving west in search of Mount Rushmore. I guess I should start packing! And don't you worry, I plan to update along the way and share with you our RV'ing adventures (and I'm certain there will be plenty of "adventure" to share. There always is!) Wish us luck and say a few prayers!

Thank you, Make-A-Wish! For granting our son and family this very special wish...thank you!
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Friday, October 21, 2011

Making it work.


"Making it work.", it's what we do. 

This has been a very full week. We've been trying to settle in and re-familiarize ourselves with our home and daily routines, while juggling a large volume of phone calls, nursing visits and life with three kids.

Wyatt's health seems to be at somewhat of a standstill. His LFT's (liver function tests) are all greatly elevated, he's significantly jaundiced, his pain continues to be difficult to control, his belly is distended and tender. Physically he's limited by pain and discomfort, though we continue to try to get him upright in his activity chair at least once a day when possible. It wipes out what little energy he may have had and often times leaves him more uncomfortable through to the next day, but we do know we must keep those muscles doing something each day. He may not be able to move about freely on his own, though he could very possibly be the best bed scooter and blanket kicker in this part of the country!

While settling back into our home, we're also becoming accustomed to and working out the kinks with hospice care. I think once things all fall in to place that we may have a very good team in place for our boy.
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Saturday, October 15, 2011

Home sweet home.

 After a lot of phone calls, coordinating deliveries and waiting not so patiently for all the pieces of Wyatt's care to fall into place, we transferred him into his wheelchair and hooked him up to all his home equipment. We then began to walk out of the hospital room, officially bringing this hospital stay to an end. We hugged those that we've become so close with and the nurses cheered for Wyatt as he left the wing of the hospital that we know so well.


The emotions eventually caught up to me as we were leaving the hospital and I was sitting slightly behind Wyatt's wheelchair in our van, watching his monitors and stroking his hair. I was so happy to be bringing my boy home again, but the past month of stress and worry filled my heart at the same moment. Life has changed for our family, a lot.


It could probably go without saying, Wyatt was very happy to be home. Maggie climbed into his bed, snuggled up next to him and stayed there the entire evening. They would whisper back and forth, watching their favorite shows together, at times I even caught glimpses of them holding hands. Jilly was a little more hesitant to climb through the tubes and attachments to get comfy on the other side of her Brother. But was happy to snuggle every chance that she could.

The hospice nurse followed us into our home as we walked through the door. Bryan and I got Wyatt settled and she then hooked him up to his Methadone PCA. We organized paperwork and tried to explain to her what all his attachments were. She didn't stay long, leaving us to a quiet evening alone with our children, all under one roof.

Today was dedicated to organizing and wrapping our mind around Wyatt's new schedule of care. I was on a mission to organize the 5 IV lines that are continously running from his central line, oxygen tubing, pulse ox cords, bipap tubing, G and J tubes, foley bag and the electrical cords that are associated with the equipment the best I possibly could. I think I found a system that works for now. It's hard to determine how he's truly doing today as I expected today to be rough, just from all the change and movement from yesterday. This afternoon we met with another nurse from hospice and again explained all that goes into caring for our son. A phone call was made to the palliative care doctor and the Methadone dosing was slightly increased to accomodate the change in his pain levels. We'll check in with the nurse again tomorrow. But right now he lays nearly asleep in his bed for the night. Tucked in amongst two large, soft, fluffy body pillows and all his stuffed friends.

Thank you all for the thoughts, prayers and support that has been extended toward our family recently. We appreciate you all, please know it means so much to us. 





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Wednesday, October 12, 2011

Hospice care and home.

Yesterday we've talked a lot about home. Going home. That's exciting right?! I think so. Wyatt has been needing a little more motivation for that excitement these days. His spirits are low. At this point in time, he's unable to sit, stand or do any of what he was once able to do, his pain is great. But he's still here and that's what my eyes and heart are focused on. I'm feeling incredibly thankful that he's still here, laying beside me sleeping soundly. This boy is one tough kid! But I do worry and wonder how much can one young boys body withstand?

His wheelchair was adjusted and tweaked as much as it could be to accommodate his new abilities. And yesterday was the ultimate test...he was instructed (gently lectured) into trying to sit in his chair. He needs to be able to do this in order to make the hour long ride home (at least that's what we're using as motivation.) His team surrounding him to support him both physically and emotionally, there were tears and he begged to be put back into his bed. It was really hard work. But at one point he settled in and didn't look entirely miserable, which is something to be noted! It was 38 minutes and 4 seconds before his physical therapist lifted his body back into his flattened hospital bed.

Yesterday I was asked by several people if I was comfortable taking our boy home. I sit here now looking at his entire set up in the hospital. Am I comfortable with my boy needing all this? No, not at all. Am I comfortable handling the machines that are keeping him alive, administering round the clock IV medicines and making sure his vital signs are all in check? Yes, I am able. Am I worried? Yes. Am I scared? Yes, a whole lot. But not of his care, per se. I'm very scared that he won't bounce back like we're hoping. I'm concerned that we'll need to come back to the hospital sooner rather than later. I'm worried about his comfort. But if our team can get us all the new meds and equipment that he needs in our home that he uses here at the hospital, we can do it. I don't doubt that for a second. He needs to be at home in the midst of all the chaos of school mornings, ballet classes, cub scout meetings, piano lessons and most of all surrounded by his Sisters love. He needs those girls...unbeknownst to them, they're the best therapists he could ever have!

This morning we have a meeting with the hospice company that will be joining "Team Wyatt." In this life that we're living, hospice is often a daunting thought, especially when brought up in regards to your child. What we're hoping Hospice will be for us is more support, more eyes and ears available to help us through this journey, resources available when we need them, knowledge available when we ask. We're not doing anything different than we're currently doing for our boy in regards to treatment or care. We're always re-evaluating what quality of life means to Wyatt and our family. That will all stay the same, but our hope is that we'll be able to keep Wyatt out of the hospital for longer stretches and his pain managed and closely monitored.

There are a lot of pieces that go in to getting a critically ill, medically complex child home from the hospital. So, yesterday, today and the next day, possibly the next two, will be dedicated to pulling all those pieces together and setting our sights on getting home sometime this week.
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Tuesday, October 11, 2011

Tuesday morning.

Wyatt had an abdominal xray yesterday morning which showed his organs even more enlarged than they had been. Which explains the huge belly and amounts of pain that he's in. The belly started to swell again after the prolonged seizure on Wednesday and even more so after the seizure Friday. With that we took a few steps in the wrong direction.

Tomorrow, Wednesday, is the last dose of "ampho-terrible." Our original goal was to run for the doors after the amphotericin was complete. We're keeping that goal in mind, though there is a LOT of work to be done on every ones part, including our boy's and his body. Even if we don't get home on that original goals date, ending the amphotericin is one step closer than we were.

Right now we're continuing to battle pain control, tweaking doses and changing plans.
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Sunday, October 9, 2011

Friday and Saturday.

Wyatt stayed hooked up to the video EEG through Friday afternoon. Not too long after being unraveled from the gauze and the electrodes removed, someone showed up with his new AFO's (foot/leg braces) and TLSO (back/trunk support). We had ordered these several weeks ago and were waiting for them to be specially made to fit our boy. I helped to hold Wyatt's upper half to try on the TLSO. The employee then left to make adjustments to the pieces and his physical therapist and I watched as Wyatt laid in bed, his coloring changing drastically to a pale dusky color. He began moaning that he hurt so badly. He then closed his eyes and would open them again with his eyes rolled back. We put his bipap machine back on him, noticed he was looking more jaundiced and the nurse began calling the doctors. He was unresponsive for a while and then his respirations began to decrease. He stayed this way for a couple hours, he would try to wake when shaken and his name called, but would only open his eyes for a second before they would begin to roll and close again. His coloring stayed pale. At one time his own respirations stopped completely and the bipap machine (and added oxygen) was doing all the work to keep the air circulating throughout his body. We were all worried, but were in agreement that the events appeared seizure like. As the night shift started for the evening, our favorite resident came by after she heard what was going on. We talked for a bit and then she tried to wake him. He opened his eyes as he would have if he was just taking a short nap and began to answer her questions. He then asked to watch the TV...and we knew he was back. Ever since waking his heart rates are now higher than his usual, the jaundiced more pronounced again (his bilirubin and all the LFT's have been spiking higher since Wednesday's prolonged seizure) and his belly more bloated and tender (again.) After talking it over with the attending doctor yesterday they drew another set of cultures from his lines, a separate from his blood and also one from his urine to see what, if anything, they may find. Something seems to have changed, we just aren't sure what exactly. He did play with the laptop computer for a short while yesterday evening and watched the movie Monster's inc. last night. He just woke for the morning today. We anticipate a relatively quiet day, though you never do know around here.
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Thursday, October 6, 2011

Updates.

I know I'm behind on updates. I've written a few but haven't had the time to go back and post them. So, this post will hold a few updates within it.

Monday:
Bruises and holes run up and down his arms and feet. They were drawing blood for blood work from the veins in his feet and ankles, to preserve the veins in his upper extremities for IV's. Throughout the weekend it was evident that he was in desperate need of reliable, central access. The amount of meds and infusions that need to be run was only increasing. He was put on the OR schedule today for a new central line and we were transported down to the OR in the afternoon. Once we arrived in the pre-op area we were so happy to see that the surgeon that would be taking care of our boy was our usual, Dr. K.

Wyatt was very anxious and scared. He hates anesthesia and he let them all know it. While waiting for Dr. K to come out to the waiting room and tell us that all went well, I noticed it was taking them longer than we thought it would. He eventually came to talk to us, though the expression on his face clearly showed that it didn't go as easily as we were all hoping. He sat down and proceeded to tell us that Wyatt's lung disease must be more severe than any of us have ever thought. His respiratory status throughout the surgery was not stable and there were times that they were unable to get any air flow into his lungs. His body has no reserve of oxygen, like you or I would, and his oxygen saturations dropped very low, very quickly. There was a big concern that they wouldn't be able to extubate him. But they got through the surgery and eventually they were able to remove the breathing tube. At that point they came to get Bryan and I and we went back to the recovery area. We could hear him screaming before even getting to his bed. We arrived to him with his O2 saturations at 79, his face very swollen and his color poor. He was hurting very badly and incredibly scared. He needed (and wanted) the bipap machine that he's been relying on for the past week. It was sitting next to the nurse but she didn't know how to work it and was waiting for a respiratory therapist. Ugh...I can do that! So, we pressed the power button and put it on him. His SAT's started to slowly climb up and he settled down from his frantic state. I convinced him to close his eyes and sleep, and promised I wouldn't let anyone near him. He's so, so frightened of anesthesia.

The anesthesiologist came over after Wyatt was more settled, looking stressed, and said they didn't expect what had happened and to let her know the next time he needs to come to the OR and she'll go on vacation!

He did ok after getting settled on his bipap and eventually we were transferred back to our room this evening.

Tuesday:
We started Wyatt on Methadone infusions around the clock last night. We weaned him off the continuous (basal) rate of Dilaudid slowly as we introduced each new Methadone infusion. He now has a "demand" dose of  Dilaudid through his PCA pump (his push button), in addition to the Methadone that's infused every few hours. With the methadone on board we actually reached a 6 out of 10 on the pain scale today. So exciting! We even saw smiles and were able to get him sitting in the tumble form chair for a period of time, playing with toys. We saw progress and clear glimpses of a more comfortable boy. We saw hope, clear as day. As the Methadone dose fades in his system and it's time for the next infusion, we can clearly see his pain signals return and he was once again more withdrawn and hurting. While disappointing that we saw the change in him, it was good for us to see as we know the the med is working as we thought. He's been wearing his bipap and still relying on its support for the majority of the day and all night, though we did trial the nasal cannula more today as we could tell that he was breathing a little easier with the spurts of decreased pain. It's been a day of progress.

Wednesday:
We had a quiet night and an overall uneventful day today. Overnight his blood pressures stabilized more than they had been, his respiratory rate steadied and heart rates telling that he was comfortable. There wasn't much to talk about with the doctors this morning. "We're staying the course" was the only instruction. Throughout the day he played with play dough, was playing on the computer for a bit and was even painting at one point. He used the nasal cannula more and the bipap a little less than the previous days. We adjusted the Methadone dosing slightly and I'm anxious to see if it makes the difference that we're hoping for. He's tired out and tucked into bed for the night. Another day of good progress.

Thursday:
After I typed up our Wednesday update my computer wouldn't allow me to "publish" the post, so I decided to try again this morning. I figured I would just lay down and enjoy another quiet evening. Wyatt was being whiny and was agitated, but I was hoping he would just fall asleep. Thinking he was worn out from the activities during day. At just about the time that I settled in and covered up, all of Wyatt's muscles began to convulse intensely and rapidly. But he seemed conscious, asking us to "make it stop." His head and hair began to soak in sweat. A couple doctors and many nurses surrounding him trying to figure out what was going on. Was it a seizure? Was it not a seizure? His entire body rhythmically jolted for over an hour total before his eyes rolled slightly, eyelids closing and he fell into a deep sleep. His body still and resting. He woke up just a short while later, hurting "everywhere." After trying our best tricks to make him more comfortable he did fall asleep and had a peaceful night.

This morning as he was sleeping we saw several of our doctors, all checking in to see how he was doing. They were all called last night to ask for any input or ideas of what could be causing the extended clonic movements that were happening. No one had any profound thoughts. Still wondering if it was a seizure or not. As Wyatt woke late this morning, he's been weak and quiet, not moving much. I asked him about last night, wondering if he had any recollection of the events. He doesn't remember anything....talking to us, his body moving so intensely for so long, the rectal temperature that the nurse took. Nothing. Which makes me feel better, in a way. I don't want him to remember events like this. And it does tell us that he wasn't as conscious as we had all thought. He's done this before just recently, he appears somewhat conscious but has no memory of the events, leading us to believe it probably is seizure activity. He'll have an EEG today to see if a focal point can be spotted where the seizures could be originating from.

To be continued...
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Sunday, October 2, 2011

Our Weekend.

Wyatt's body is tired and struggling but he's holding his own. We can't really ask much more than that at this point in time. In the course of this week our daily meetings with the doctors involved the subjects of lab values, pain control, new treatments and medications, along with the delicate conversations of hospice care and DNRs. And the range of emotions that come with each.

As I sit here typing Wyatt is laying in bed, holding tightly to his stuffed bears watching TV. His bi-pap mask on his face providing respiratory support. He's only able to tolerate removing the bi-pap (and going to nasal cannula) for very brief periods of time as his body is struggling to breath. His respiratory rate has increased further since I last posted and in response we've increased his pressures on the bi-pap machine twice today, hoping to open up the deflated, collapsed areas of his lungs. Blood pressures now also a concern, have been steadily increasing since I last posted, as well. After talking about it with the doctor we started a medication to lower his pressures, in addition to a "rescue" med to bring them down further until the medication has enough time to take full effect. It's been a struggle to keep his potassium up at an acceptable range and there were great concerns with it just yesterday, but today, after multiple infusions of potassium it appears to have increased enough we're out of the "critically low" area for now. His body is beat up, from both the infection process and the harsh medication used to combat it.

This life is a tough one, I don't think many would doubt it. Repeated hospital stays can be hard, this Summer (and now Fall) we've spent more time in the hospital than out. But as we experienced during this stay, having friends just down the hall has been refreshing and at times very comforting. When I'm feeling like a caged animal and so sick of seeing these same four walls of our room, I've been taking a short walk a few doors down to visit two other mito families that we've come to befriend that are inpatient now too. While I was sad to see them arrive, there were times that I was so relieved that they were here. I'll be excited for them when they're on their way home, but will miss the company and friendship while we stay.

Friday evening we had special visitors visit us from the Make-A-Wish foundation. While the visit didn't go as we had hoped and Wyatt was feeling very poorly, the process was started for Wyatt to receive a wish. I hope to talk with the organization early this week to plan further and clarify Wyatt's wishes more. I'll share more once things are more organized and the wish is in motion.

While our Make-A-Wish visit didn't go as smoothly as we were hoping Friday evening, Saturday was the perfect day for a great surprise! I had emailed with Maggie's teacher earlier in the week and she told me that Maggie had shared with her that she was feeling sad and was upset that Wyatt wouldn't be home for her Birthday on Saturday. I knew this weekend would be hard for her and struggled with how to handle the situation. As I was talking it through with several people that had been gathered in Wyatt's hospital room at that time, a nurse mentioned putting together a party for her here at the hospital. Wyatt would be able to attend in his bed (he's unable to sit upright) with all his gear and the nurses were willing to rearrange their schedule so that a nurse would be with him the entire time. Wyatt liked the idea and was excited that we could keep it a surprise from her! Let me tell you, it's very possible to pull a party together quickly when you have family friends that happen to be in the hospital at the same time, that just so happen to have siblings who are also friends with our children. Instant party! We talked to the best social worker in the hospital who was able to reserve us a special room for our celebration and was even able to order us cupcakes from a local bakery. Grandma and Grandpa scoured the stores for Justin Bieber party supplies and related necessities. And come 1pm Saturday afternoon most of the party goers had gathered in the room waiting for the newly double digit Birthday girl to arrive. She walked in as we all said "Surprise!" with a look of uncertainty on her face, and turning shy once she realized we were all there to see her. She rushed over to give me a quick embrace and turned right around, leaning across the bed, to give her brother an extended hug. It meant so much to her that he was there on her 10th birthday. The perfect surprise!


Thank you all for the thoughts, prayers, love and support. Each one is appreciated...we coudn't do this with out!
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Friday, September 30, 2011

One day at a time.

I can't seem to find the patience or words to sit down and type, but I'm trying because I know there are more than a few people that are waiting for an update on how our boy is doing.

The good news: we're seeing small steps in the right direction. They switched his PCA pump from Morphine to Dilaudid a couple days ago. At first we didn't see any difference at all and were feeling a little discouraged. They then began to start the process of switching to a new pain med, Methadone. It's not used in our hospital often and many are not comfortable with it, so it was causing a bit of an issue among the nursing staff. It all came down to not being sure how to use it. The palliative care doctor that's overseeing Wyatt's pain management was off for the day and there was a lot of confusion swirling. They eventually came up with a plan, but as they were finalizing said plan Wyatt began to perk up a little. So much so, with the physical therapists help we were able to transfer him and all his lines/attachments into a reclined tumble form chair sitting in his bed. It wasn't easy and at first caused him to forcefully retch, but his shaky muscles relaxed after some time and he settled back into the soft seat. He looked so different than just a few days prior...a good different! He was sweating as his muscles were working so hard. A neck pillow holding his head upright and a new comfy blanket laying over him.

His pain is slightly decreased. We decided to not go with the methadone last night for several reasons. One being they couldn't seem to coordinate it all and it would have left him approximately 18hrs without pain medications. 18 hours is a very long time to a 9 year old, let alone a child that is in so much pain! We weren't sure the dilaudid was doing anything, but I wasn't quite comfortable with taking the chance of stopping it, just in case. So, with this small improvement of pain we decided to keep going with the dilaudid for the time being. I talked with the palliative care doctor this morning who said she would be meeting with the nursing staff to go over how the Methadone should/could be handled on the floor. We know this will be in his future and it's clear that his entire "team" needs to be aware of how it'll be delivered and handled, so that we're all more comfortable with the situation.

This morning he has been (again) forcefully retching and vomiting several times. The last time being when the doctor walked in to say hello for the day. After talking and witnessing the force that's associated with these "events" she decided to stop everything that's going through his GI system....his system isn't moving, absorbing or tolerating any amount of anything at this point. He's not tolerated anything for awhile now, but his body's reaction to even the most minute change is now extreme. The medications that were able to be moved to an IV form were long ago, but we were stuck with a few enteral meds that had no alternative route to be given. We stopped giving the majority of the enteral meds already earlier in the week, but were left with two. But even those two small amounts are so hard on his body, it's just not worth it.

He's puffy and retaining fluids. His heart rates are a bit lower, though his respiratory rates are even more increased than yesterday. His breathing is labored, shallow and fast. This is his body's way of compensating for the greatly enlarged organs pressing on his diaphragm and down through his pelvis. We've been using the bi-pap machine to our advantage and having him put it on for several hours during the day, as well as when sleeping. Giving his body time to rest and fill his lungs more than what he's able to do on his own. His blood pressures are greatly increased today, which they're keeping an eye on. It's a delicate balance keeping this boy in check. Each day there are new infusions being added and things that need tweaked, looked at and/or changed completely.

But he's hanging in there. One day at a time.

We have a couple of exciting things popping up here in the hospital in the next day or two. I promise to share and hope to have pictures to include! Stay tuned...
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Wednesday, September 28, 2011

Staying the course.

We've had a few very serious talks with Wyatt's doctors these past couple days and between Bryan and I about the future and our wishes for our son at this point in time. They're the conversations that no person ever wants to have, but are needed at times. It was so very hard to think of the options and consequences that each would or could hold. So very hard! But we made it through, slept on it a bit and woke yesterday morning ready to take on the day. Emotions have leveled out and processed a bit more, the initial shock wearing off. We now have a goal.

Yesterday it was decided that the central line needed to come out. He was getting sicker and not improving, even after giving the amphotericin time to work. The OR schedule was booked, so instead they began planning to take him to the PICU, setting up a makeshift mini OR and would remove the line as soon as they could. But it also came time to decide what kind of line to put in after his central location was removed..several peripherals or a femoral. The safest options, in regards to infection risk, would be placing peripheral IV's. There is a big risk of the fungal infection spreading with the femoral lines. So, it was decided we would try peripheral lines and move to a femoral if we need to. He now has peripheral IV's infusing very harsh medications and fluids through them continously. He already blew one vein last night and needed the IV team to place another....so, we'll see how this goes.

He recovered in the ICU while receiving more blood and a 2nd potassium infusion for the day. After the procedure the ICU doctor told us of her plan to check in with Dr. R to talk about what to do with Wyatt, she didn't feel entirely comfortable sending him back to our usual spot on the floor because, as she said, "he is sicker than a lot of the patients that are in the ICU already." She was wanting to keep him in the ICU, but after some discussion, following his blood and potassium transfusion/infusion, his bed and attachments were rolled back to his room. Wyatt was much more comfortable in his "own" space. We arrived back to the room just in time for a few visitors to show up. He tried his hardest to stay awake for most of their visit and even talked with them a little bit.

His organs within his belly enlarged and crammed together, still squishing all that resides in the space. Making his belly hurt so badly. They increased his morphine through the PCA pump two times yesterday. And there has been talk of trying a different drug today. His heart rate has been staying very elevated (for him), possibly due to the amount of pain that he's having. And last night his body was having a tough time regulating its temperature. He continues to have periods of forceful retching, also.

But, we're "staying the course" and trudging on fighting this nasty infection. He can do this.

As always, thank you all for the thoughts, prayers, love and support. We appreciate each and every one. It means so much to us. Thank you!
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Tuesday, September 27, 2011

Missing my boy.

I miss my boy. Currently, he's been laying nearly motionless, mostly grunting and groaning responses. His skin discolored and his body looking frail. Every so often he may shake his head yes and/or no when asked a question. Or he'll motion to the area that it hurts the most for the doctors and nurses. We've gotten about 30-60 minutes total of interaction out of him each day the past several days. But he's usually sleeping or going in and out of sleep while staring blankly at the TV. When he is awake he hurts a lot.

He's very sick and he looks very sick. It's scary. His body isn't tolerating the treatment well. He hurts a lot and seems to be still running temperatures. Though, it appears last night that always reliable autonomic dysfunction kicked in and his temps are now also swinging low.

I wish I could take it all away. I really, really do. He's not going the direction that we were expecting.
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Sunday, September 25, 2011

It's Sunday.

The day was as we expected yesterday, he slept the majority of the hours. He did wake to visit with a loved one, sat propped up for a short while interacting, before he slumped down into his bed complaining of increased pain. A quick swipe with the thermometer showed that his temperature was up again. Just a little while later he started shaking and the temp climbed a bit higher to 103. As he was shaking, his hands began stiffening/twitching and he started repeating words. He was "with it", yet not really. And the night before as he was spiking his big temperature we saw very similar (if not the same) things and heard the same words repeated...he has no recollection of either of those events. Which makes us think he very possibly could be seizing as he's spiking the temperatures.

His belly has been swollen, hurting him a great deal and more firm than usual. The output from his G and J tubes has greatly decreased the past 3-4 days, which is unusual for him. Usually, he puts out a lot of interesting colored fluids from both the tubes (between 500-1000ml's/day is typical for him anymore). Last night it was decided to do a few xrays looking for clues. And we were told this morning that his liver and spleen are very enlarged and squishing all his intestines, which is probably why we have such a huge decrease in output and explains the swollen, firm belly. The fluids are essentially "stuck" inside him because the area is so squished. That would explain the great deal of pain coming from his belly...between the enlarged organs and the amounts that he typically drains that are not able to flow out.

He's been liking the PCA button and we've seen minor decreases in pain. Not as much as we'd like, but it does seem to be doing something to take the edge off. (We've occassionally gotten a few 8 out of 10's on the pain scale for specific areas of the body, instead of always 10 out of 10. One time there was even a 6 thrown in there for an area.) Though, at times when the pain is really bad he doesn't appear to feel any relief.

Yesterday, before we even started the round of ampho-terrible, he was running a significant temperature. We gave him the toradol and not long after started the pre-medicating process (for the amphotericin) with doses of IV benadryl and Tylenol. The combination of the toradol and tylenol seemed to kick his body into breaking the fever and he began to sweat it out again. Just in time to start the nasty med. He did spike another temp through the night, but this time an hour after the ampho dose was complete. Which could have been what his body was going to do anyway and not related to the ampho, but could also be directly related...there's no way to tell. But overall it was a quieter night than the previous, which I am very thankful for!

This morning he did wake up  He's currently flopped out in bed, staring blankly at the TV and occasionally "resting his eyes" with sleep. He's a ripe shade of yellow/green/orange.

The weekends are pretty quiet in the hospital. We saw Dr. R this morning and will probably see the infectious disease doctor at some point. Right now, Bryan is home picking up a few things and running a couple errands before coming back. This afternoon we're expecting a few visitors, which will be nice. We miss the girls terribly! We've been able to skype with them in the evenings, but we're looking forward to hugging them this afternoon.
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Saturday, September 24, 2011

Bad day. Really bad night.

Yesterday was rough for Wyatt. His pain was increased, his temperature elevated and he was "withdrawn" for a good portion of the day. Just staring, eyes closing to a sleep periodically, growling at us with his moans in response to questions and just feeling lousy. Several brief times watching TV and "resting his eyes," as he likes to tell me as he's falling asleep. It got a bit worse when the urology resident walked in to the room prepared to change his foley catheter. It's important to clear the infection residing in his bladder, I get it, but I felt for my boy. With a nearly 103 temperature and just getting by with enough energy to simply lay in the bed and his body hypersensitive as it was. He worked himself into a frenzy about the catheter change, to say the least. I was at a point that I was able to talk and try to convince him, but I couldn't bear to help hold him down to do this. I know I wasn't the only one in the room hesitant to get it done with how he was feeling. But they did. After that point he laid completely still, staring, unresponsive to most and only slight groans to my questions. Though, I did get a quiet groany "I love you too." He was exhausted, physically and emotionally done for the day.

However, it didn't get easier as the night wore on. He was started on a new drug, amphotericin. I was warned by several before starting the first round that it has the nickname, "ampho-terrible", because of its nasty side effects. That was no joke! As he received the first dose of amphotericin he began to shake all over, painful rigors. His yellowed/green tinted skin turned a shade of grey that I don't believe I've seen him as before. They upped his oxygen by several liters to help. His temperature spiked incredibly fast and the thermometers only read "HI", as in his temperature was too high for the thermometer to read. We (the night nurses, Bryan, and I) think the temporal thermometers stop reading at 107.9, so apparently his body was above that (according to two different temporal thermometers that we were using to make sure of the reading). His axillary temp was a bit lower (but typically not as accurate for him) and they decided to record that in his chart as it was at least a number and not only "HI." He was quietly saying, "I'm so scared" over and over. And was hitting his pain button repeatedly, with very little relief. It was a bad night. His temperature would drop for a short while and then spike and drop again. I anticipate him sleeping much of the day today, while his body tries to recover. And just in time for another dose of  "ampho-terrible" this evening. Please pray that he'll get through it a little easier this time.

He just woke for the first time this morning. Looking rough, as we expected. His coloring now a more prominent shade of yellow/green and laying motionless nearly falling back to sleep. His body needing the rest.
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Friday, September 23, 2011

Fungus.

Not long after I posted my update yesterday morning the doctor came to check in. With him came new news, Wyatt's growing a type of fungus in his central line. This is not good news, by any means. But I had a feeling there was more to it than just a bladder infection with the fight that's going on in his body right now. They called in the infectious disease doctors and changed the anti-fungal that he was on. We don't know the actual type of fungus yet, they hope to find that out today.

Despite what the cultures revealed our boy seemed to have an "ok" day, relatively speaking. He's had worse! He was tired and hurting until the later afternoon when he began to perk up a bit, moving his body more and less withdrawn. Come early evening he was hooked up to a PCA pump with morphine. A PCA pump is a little machine that gives Wyatt the ability to control the frequency of his pain medication with the push of a small hand held button, whenever he feels the need. Ah, control. This is something that Wyatt doesn't have much of these days. He has no control over his body, the tubes and machines that he requires to function on a daily basis, hospital visits and doctors...giving him the ability to control his pain on his own terms, when he wants and feels the need, is such a good thing for him. At first he was a little hesitant and seemed almost scared of pushing the button. We explained it thoroughly and reassured him that nothing "bad" was going to happen. There have been times that he forgets that he has this new ability and complains of pain, which we then remind him of his button and reassure him that if he feels he needs to push it he can.

After being hooked up to his PCA we took a little field trip downstairs to attend our monthly Chronically Cool Families group. Wyatt was looking forward to seeing his friends and did very well interacting. Mommy and Daddy enjoyed the adult group, as well! By the time we made it back upstairs and got Wy situated in his bed he began to complain of pain and "being cold." Sure enough, his temperature was once again high. Since starting this round of infections nearly two weeks ago we've seen this, when he sits upright in his wheelchair for an hour or so his temperature will rise and "spike." The doctors haven't been able to give us an explanation for this yet. Currently, he's running a low grade temp, though he's not been sitting up this morning.

So, we will see what today brings. So far we've already talked with Susan, the nurse practitioner in Urology and we'll see the rest of the docs pretty soon.
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