Monday, March 28, 2011

Field trips.

We took our ordinary home bound schooling days on the road Friday. Unlike a typical field trip to visit an educationally fun setting away from school, Wyatt (along with Jilly and I) took an equally educationally fun field trip to school.

The boy was excited to be back in the building, his eyes were twinkling, his smile bright and radiating joy. Jill was excited to be going to school, armed with a tote bag packed with activities to keep her busy. Watching her confidently strut through the school doors as if she owned the place confirmed my thinking that we don't need to worry about her starting school next year. That girl will be just fine!


As we first walked in, we were able to visit quickly with the nurse and chat with his beloved teacher from last year before making our way to the 2nd grade classroom. We were greeted by his current teacher who was very happy to see him and just as excited as we were that he was visiting for the afternoon. Wyatt parked and quickly unbuckled himself from his wheelchair, gathering all of his bags and attachments. He sat in the miniature school chair and pulled himself up to the desk with his name tag still taped neatly on the top. He hasn't been back to the school building since October, when he started on TPN (IV nutrition). It was an adjustment, initially, to be away from the school setting. Though, as I've mentioned in the past, he's been attending classes each week by video streaming via laptop and a very large, technologically advanced TV/camera set up in the classroom, which we are so thankful for. But having the ability to sit next to friends, able to reach out and touch them, talking, learning and laughing with them has been sorely missed.

The children in his class were in another part of the school for 'specials' at the time of our arrival. Jilly and I made a spot for ourselves at a table in the 'pod' area of the 2nd grade, just a few feet away from the classroom. His class walked around the corner, single file, and walked toward the classroom's open door. They quickly took notice and began to exclaim "Wyatt!!!" Many of them scurrying forward hugging him in their excitement. It was clear they were all pleasantly surprised to see him. And the smile he gave me as he looked out the door to see if I was watching was priceless. I couldn't hold back the tears...I was so happy for him. To see that smile.


Today, Monday, we snuck back into the school to finish the poster for the project that he was working on with his group. In addition to sharing his book, Wyatt's World, with his classmates. There were a total of 3 classes that attended this mini assembly of sorts...sitting nicely, legs criss crossed and listening carefully to each and every word that he read from his book. I wasn't sure he'd be comfortable sitting in front of the sizable group of children, reading his story loud enough for them to hear. But he did it, smiling and soaking it all up! Professionally answering questions after completing the reading, choosing one child at a time in amongst the gaggle of small hands raised in anticipation.


We hope to make these field trips to school a weekly habit now that the germ filled winter months are behind us. We may have to limit our visits to once or possibly twice a week, as they tire the boy out greatly. But he says it's all worth it...







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Wednesday, March 23, 2011

A cold, wet Wednesday.

Spring, I know you're here...
Come out, come out wherever you are!
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Monday, March 21, 2011

A bump in the road.

The pediatrician is off leading a group of "doclings" residents and doing good in the world. Which is something great, and rather inspiring! But I warned him (and prepared myself) at our appointment last week that when he leaves the country, we all know something's going to go down that we'll 'need' him for. Pessimistic or not...that's how Wyatt 'rolls', folks.

It wasn't a catastrophe, per se, but a bump in the road, I guess you could call it. Our weekend didn't start off as originally planned. Wyatt was in significant pain saturday morning after receiving his morning doses of meds. We began emailing back and forth with the pediatrician, answering questions and clarifying what was happening. With the information that we had provided he advised us to start draining Wyatt's J-tube along with his G-tube to see if that would provide him any relief. It worked and brought his pain level down a couple of notches on the pain scale, which provided us with a sense of relief.


His GI tract is in a tizzy. Clearly it's largely dysfunctional in the first place...ergo the IV nutritional status. But we were seeing signs of the impending episode since last week. Nothing new there, but he's understandably uncomfortable. Nothing going in and or absorbing (medicines) and nothing coming out. We're draining the J-tube intermittently between the various doses of medication to provide relief when he's feeling the most pain, while draining the G-tube continously. Today, as he's feeling relief of the pain and we unhook him from draining the J-tube (to give meds and allow time for them to absorb as much as they're going to), he quickly starts to feel poor again. We have a crabby, hurting boy on our hands.

On a happier note: Sunday we were able to schedule a time to meet with Wyatt's wonderful teacher for a few hours and finish a project that they have been working on for months. He was very excited, as was I! He put so much hard work and thought into this book. Dedicated to "my Dad" and finshed with an about the author page and all. It's now 'published' and appropriately titled "Wyatt's World". The book is about his very own amusement park and each page describes a ride and/or area of the park in detail. It's perfection. He has read and re-read his book repeatedly since finishing. He not so patiently waited all morning to share it with his vision instructor and the nurse as they came to our home for their scheduled times. He's looking forward to the day we plan to visit school and share it with his classroom full of friends!


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Thursday, March 17, 2011

Slightly more medical.


Still enjoying the change of seasons. But our medical free zone that we were swimming in has been slightly more medical than free. Nothing overly dramatic, but smaller issues here and there requiring attention.

We've been working and trying to keep our boy hydrated appropriately. It's a tricky thing these days, which requires communication between many. They've changed the formulation of his TPN and added a significant amount of hydration, in addition to the 500ml saline bolus that he receives daily. We're hoping these new changes will help us find that intricate balance that his body is seeking.

Meds for bacterial overgrowth have been started, yet again.

We've also been noticing small clots of blood emerging from the g-tube drainage, which is a bit perplexing. It's not a lot and once it starts it does eventually stop, but enough to notice and wonder where it's coming from exactly. If you remember, we've seen this before and not that long ago. Which may be why we're not more concerned just yet....been there, done that. For now we're watching and did inform the doctor of this new development today at our appointment. His lips are bleeding more, as well. Which makes us wonder how those pesky clotting factor numbers are looking right about now....along with the bilirubin numbers. His g-tube drainage has stayed the white-ish color with yellow/green bile thrown in every once in awhile. It just depends on the day. We did discuss with the doctor about the consistency of the colored bile that we're noticing, it's not liquidy but more 'chunks' and sludge like, which made the doctor wonder what his bili numbers may be and if the bile ducts are flowing properly. Truthfully, that was our concern initially when experiencing the drastic color change. It went from one extreme, large volumes of thick bile (upwards of 1000mls/day), to another of creamy white-ish "stuff" and at a reduced volume to boot. We were certainly not complaining about the reduced volume end of this...that was welcomed and ideal! At the time, after hearing from the medical professionals that they didn't know why our sons body carried out this big switcheroo, we eventually just went with the assumption that this finicky, delicate gut of his had decided to settle a bit since discontinuing enteral feeds weeks prior. But now seeing the sludge-like chunks of bile makes us wonder all over again....what exactly is going on in there! Round and round we go....



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Tuesday, March 8, 2011

Living life

The sun is shining through our windows, the outdoor temperatures are warming up and the shortened winter days are stretching longer with each sunset that passes. Spring is creeping in slowly, but surely.

For the past week or so I've felt an urge to get out, live life. There is a lot to fear in the Mito world. I can't help but feel we're always waiting for the other shoe to drop. Expecting an infection to pop up out of nowhere because we've been told it will happen. It very well may, we won't know till it's here. But if there is only one thing that I've learned through all our medical adventures, it's that our boys body doesn't play by the rules. He writes his own.

Spring and Fall are our prime seasons. We're able to get out more without being bundled stiffly within winter coats, scarves and hats, or not being smacked in the face with a wave of heat and humidity that makes you gasp. Wyatt struggles to keep his body temperature regulated, which makes it tricky to keep his vital signs where they need to be and uncomfortable for him during the winter and summer months. But bring on the Spring weather and we're ready to roll.

I may kick myself later for saying it out loud, but since starting TPN this has been the longest stretch that our boy has ever gone without getting 'sick.' Typically, he is always battling colds, nasty viruses, etc. throughout the year. One after another, kicking his body into over drive and using more energy than he has available. I think the welcomed break of germ fighting activity is likely a combination of relieving his body of the stress and turmoil of trying to make his GI tract function, and I'm sure in part to being away from the school setting. But either way, we'll take this glorious break of germs! TPN has been a blessing. His body is growing...his hair, his feet, his nails. His heart rate has settled 20bpm higher to a more acceptable range, his interests have expanded with the new found comfort...he's living life.

That's not to say that he doesn't have "bad days" when he hurts and/or is exhausted. To expect he wouldn't would be denial when knowing what his body is battling. But when looking at the whole picture the change in him has been a great one, both in body and spirit. It's been approximately 6, maybe even 8, weeks since he's had any J-tube feedings, besides some of his medication that's put through the tube daily. He's been experimenting with small lollipops and sips of clears here and there lately. They drain out of his g-tube rather quickly, and even still seem to upset his belly to some degree. 

Even so, I'm happy to report that we have not been in the hospital in nearly 2 weeks. That's a record in this house (!!)...and one I hope to continue on! Except for a few minor issues that we've taken note of and plan to discuss at our next appointments, an email to Dr. R (the new pediatrician that I spoke of in a previous post) to ease a concern and the usual labs, dressing changes and care that comes with the child, we've had a medical free zone here! It's been a rejuvenating change in our schedules.

Which is good, because we've been busy these past couple of weeks. We spent an afternoon bowling with family, as well as attended yet another of Jilly's twirling competitions. We happily watched as Wyatt was recognized and promoted to a "Bear" in Cub Scouts. I've also done a little digging recently and found a TaeKwonDo class that Maggie and Wyatt are both going to participate in come the beginning of April. Wyatt's a wee bit excited about starting this class. In fact he was a bit disappointed to tell me, after entering to win a trip to Nickelodeon's Kids Choice Awards, that he wouldn't have time to travel to L.A. to enjoy all the perks of the trip because he has his first TaeKwonDo class the evening before the awards show! We've also signed Maggie up for church camp again this Summer. She chose the equestrian theme and is excited to be free and on her 'own' for a whole week. We're trying to figure out a safe way for Wyatt to attend Boy Scout camp for 3-4 days, with Bryan, this Summer. Still thinking on that one. Otherwise, we've been busied with our everyday tasks, making sure to take quick 'recesses' to really enjoy the warmth of the new spring sun. 

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Wednesday, March 2, 2011

Spread the word...


Will you take the pledge?
Spread the word to end the word.

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