Sunday, July 29, 2012

Special moments.

This morning, as Wyatt woke at 4am, it felt so much like when he was little. His demeanor very close to that of a toddler these days, as I told him it was very early in the morning and it was still time to sleep. He responded quietly, his words broken, but so innocent, sweetly with assurance, "No. I don't want to." As I laid there, closing my eyes and hoping that he may get the hint and decide to sleep for a couple more hours before waking again, he began thinking and talking aloud. He tried to speak, random thoughts, really. At one point he asked if he was going to get any gifts today, which I responded, "Not that I know of." I asked if he were to get a gift what he would like it to be and he said "I want to see the Muppet's." "Where would we see the Muppet's?" I say in my sleepy state, "Do you want to watch the movie today?" "No, you could take me to Hollywood" he slowly responded. Hmmm, that could be quite a trip!

Last Monday we began another 2 week course of IV antibiotics (Zosyn) and started another round of a different IV anti fungal (Micafungin). Throughout the week the foul smell that was coming from the thick mucus and at times seemingly seeping through the boys pores has began to dissipate. (Thankfully!) The new rounds of meds have helped in that way, along with fighting back the fungus. The frequency that he requires suctioning has decreased, his cough has lessened in intensity and what's flowing from his G and J tube drains are returning to what we would expect at this stage. For the time being, we seem to have this infection piece under control. It's only a matter of time before it all starts again, but for now we'll be happy with our small victories.

When awake, Wyatt is confused a good portion of the time. It's becoming increasingly difficult for him to talk, his body and muscles tremor a lot when moved, including his tongue and mouth. His speech can be hard to understand and often times he stops mid sentence, rests for awhile and then will try to finish his thought minutes later. His muscles are becoming weaker. The bipap and additional 3 liters of O2 continue to sustain him. On a vascular level, the perfusion to his extremities is poor. His fingers stay dusky in color and are now bent under. I'm able to straighten them, though there is a noticeable resistance and rigidity at all times.

He likes for someone to lay next to him in bed to watch movies together. And often requests it. I'll then find him policing me, peeking out the corner of his eye throughout the movie, making sure I'm watching and my attention isn't drifting. And he's been known for pausing the movie to 'call me out' should I pick up my phone! (Though, he now lost his ability to use the remote control.) While he's been confused a lot and disoriented, I found this morning at 4am he was the "clearest" in thought than he has been recently. We spent an hour talking as he would inch closer to me in bed to snuggle and holding my hand before falling back to sleep for a bit. These moments are special.

The girls have been trying to enjoy parts of summer. Maggie spent a week at church camp this month, while Jilly spent a week at Grandma and Grandpa's going to vacation bible school. They've been spending a lot of time at their grandparents' houses this summer, overnight stays and finding fun things to do. We've let them decide when and where they want to visit and how long they want to stay here at home versus away. It's very hard for them to watch their Brother going through these changes too. Maggie knows what's happening, is conscious of it and is torn about whether she stays or goes. And Jilly, well, she understands as much as a 6 year old should.

We appreciate the outpouring love and support from all over. It's certainly helped to sustain us during these times that seem impossible and inconceivable.

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Monday, July 23, 2012

10 years.

Today we celebrate! Wyatt's officially 10 years old today. A day I always hoped we'd be able to celebrate with him.


This week we increased his dose of methadone and also pushed aside our own fears, agreeing to put him back on a continous Methadone infusion, to possibly and hopefully control his pain to a better degree. In November, I wasn't sure I would ever get to a point to put him in this precarious position again, but when faced with leaving him in pain or making this choice...we can't leave him in pain.

His body began swelling more within the last week, his lungs harboring fluid once again. In response we increased his lasix to help pull off the fluid and stop it from accumulating. His deep cough has returned, as well as the stinky mucus that is draining from his g-tube and that we're suctioning from within him. The fungus within his mouth and throat has also reared its ugly head, the opportunistic little buggers. We started an anti-fungal and have been doing nebulizer treatments to help open his lungs and thin secretions. He's again very sleepy, sleeping 20hrs and more (mostly more) a day for the last several days.

I'm worried, concerned, sad, heartbroken, scared, mad...pick an emotion and I'm feeling it these days. But mostly I'm just so sad. I miss my boy. I feel relief each time he does open his eyes and begins talking again after sleeping so soundly for such long stretches. I then breathe for a moment, but I feel as if I'm holding my breath until those moments each and every day.

When he is awake he enjoys watching movies, snuggled together in the bed. For some reason he refuses to watch TV, it has to be a DVD movie these days. I joked with our hospice nurse this week, asking if possibly this was a rare side effect from one of the meds we just recently increased!

The last few weeks leading up to this day I began looking back through pictures. It makes me cry, but is eye opening and in some ways healing. Some pictures have the ability to take me back to the exact moment that was captured...the sounds, the smells, the smiles and laughter. I sit here now, with tears in my eyes thinking of the moments we've experienced within the past 10 years and my heart aches deeply. I miss Wyatt's smile and laugh, his full out belly laugh the most. I can hear it when looking at some of the pictures. I love this boy so much and watching him slip away right in front of me hurts so, so much.

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Thursday, July 12, 2012

A little update.

The days are flying by me recently. I realize I haven't updated in some time. Wyatt's hanging in there. I don't have too much to say about how he's doing, to be honest. That may sound odd, especially seeing as there is never a lack of options to discuss about our sweet boy. But he's continuing to make his own way in this journey, he never has followed the rules, medically speaking, and certainly we shouldn't expect him to do so now. He's had what we consider good days and not so good days. We never know what to expect...that emotional roller coaster has yet to slow down.

Within the last week we've increased his dilaudid, methadone and valium doses. This afternoon we will see the the doctor with hospice, she'll examine him briefly and we'll talk of pain control again. Her recommendations will go back to Wyatt's doctors, Dr. M and Dr. R. And we'll then decide what, if anything, we do or change next. Decisions at this point are difficult and have attached emotions, to say the least.

Wyatt doesn't feel well enough to get out of bed much these days, but when he does in the evenings he's enjoyed sitting in his special tomato seat as we wheel him through the house, squealing in the kitchen as I spin him as fast as I can in circles, his arms raised as if he's riding a roller coaster and then out onto the back deck. For his birthday we bought him a "pond", with his own fish. This little pond is perfect for him, as he sits in his special tomato (or occasionally wheelchair) the windows are the perfect height for him to watch the fish swimming around inside, as the girls gather around the other windows or looking from the top. He's enjoyed spending time with his fish in the evenings as the sun goes down and the temperature is more tolerable, as he likes to stick his hands in the water trying to "pet" them each and calling his favorites by name...Finny, Ninja, Sunny and Wyguy. Tuesday evening before coming inside he stuck his fingers in for one last time and several of the fish came to the top of the water, thinking there was food, and began to suck on the tips of his fingers. Wyatt laughed and decided they were giving him kisses.


 Yesterday he didn't feel up to visiting his fish friends on the deck, but was sure to ask me to check on them throughout the day and to feed them for him last night as he drifted off to sleep.
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