Saturday, June 1, 2013

Certainly uncertain.

Today is the first day this week that hospice is not visiting our home. No offense to our nurses or the team, but I have been looking forward to a day that we don't have medical visitors.

The night after I posted about our boy writing his own story and the uncertainty that lies directly ahead of us, he was sleeping in the recliner, snuggled in amongst 3 heavy blankets and a few stuffed friends that bring him comfort. Oh, and the purple (his favorite color) Mickey night light that he holds when it's dark. He softly called out "Moooommmyyyy." He is weak, so his voice is quiet right now. I walked over to the recliner and stood at the foot rest that was protruding into the room, while asking if he was ok. I could tell he was concentrating. He stretched his plump, swollen little toes out as far as they would go to barely touch my leg and said "Tag. You're it." I smiled, laughing a little and said "You did not just tag me. Did you?!" A very small mischievous smirk grew on his face as he whispered "Yep."

Take that, Mito! ;-)

His oxygen saturation's have been fluctuating at times, dropping low but then bouncing back up to 95 or above. He is requiring 5 liters of oxygen right now- that's with the bipap/vent. But you may have noticed in some of the most recent pics he has been wearing the nasal cannula too. Over a week ago, in what we believe was a hallucination, he had ripped off his mask. He claimed it was "hurting" him and refused to put it back on. This is very unusual for Wyatt and something he's never done in all the years he's been using non-invasive ventilation. He knows he needs that respiratory support, so I'm not sure what he thought was happening. But I was able to convince him to at least wear the cannula after I had calmed him down. Since then he's asked for the cannula more often. We go with what he wants in this regard- if he wants the cannula he can have it. And we try our best to support him by adjusting the oxygen as he needs it, knowing it may come to a point that his O2 saturations are sitting in the 80's and I must pretend it doesn't bother me too much. But if he asks for the bi-pap he can have that too.

His heart rates have been doing much of the same patterns as his oxygen, dropping low to then racing much higher. No rhyme or reason.

His pain- where do I even begin? Adding Methadone in addition to the huge amounts of Fentanyl that he requires is concerning. Worrisome. A little scary, even. But we have no choice as the disease progresses his pain increases. And not treating the pain is not an option (to us). He is still feeling a lot of pain. But I think we've seen very slight improvement since starting the Methadone. He has begun to talk a little. And I can tell, even if his eyes aren't open, that he's listening a little more to what's going on around him. With his eyes closed, he will sometimes respond when we talk to him or ask him questions. When the pain is so bad it really zaps all of his energy too. He withdraws as he's unable to tolerate any outside stimulation. He is sleeping a lot. He will wake for maybe an accumulative 1-3hrs a day. We will get 2 minutes here and maybe 4 or 5 minutes there. Most of the time he wakes to complain of pain and asks me to push his button so he will receive a demand dose of Fentanyl or to give him something else. He tends to wake more easily toward late afternoon and evening hours these days. We can get 20-30minutes while we're changing clothes, doing a dressing change or some other type of care that we must disturb him for.

The infection that started this all looks to be responding to the antibiotics. We did send off new blood cultures yesterday morning. But the UA (urine analysis) looks better. He physically is not better, though. As the nurse opened one of the organized med drawers yesterday, she looked down at all the rows and compartments containing glass vials of IV medicines and said "oh my word, it looks like a pharmacy, doesn't it?" Indeed, it does.

He's been asking for hugs or for us to just sit and hold his hand. He's been confused as to what season it is currently- he has woke up asking "What season is it?" I'm not sure why he's thinking of the seasons, but I've reminded him a few times now and added that summer break is coming up. I can't tell if he seems excited or not that next week is the last week of the school year and the girls will be home all day after that...I think a few weeks ago he was giving them a thumbs down just to pick on them and hear them scoff. (But I can assure you the girls are looking forward to school ending!)

Thank you for all the encouraging and uplifting words, thoughts and your prayers. They are certainly a part of what keeps us all going.
Print Friendly and PDF


  1. Oh the beauty of kids. "Tag you're it" this will make me smile all day! Thinking of you and Wyatt. Glad he has Mickey; he makes all things better, especially dressed in purple!! Prayers for the best possible outcome!

  2. Meant to write sooner. Always thinking of you all. Anthony loves purple too, it's a happy color! I can just imagine how happy you felt getting tagged! It certainly made me smile. Thank you Wyatt! Thanks for sharing that story!