Tuesday, September 10, 2013

We're still here.

Most easily stated, things have been changing. Today marks two weeks since Wyatt has worn oxygen. TWO weeks- he's amazing! The evening he (we) made this huge decision I could see the relief in his eyes. We ate dinner while watching a movie with him that night. He smiled and even laughed a little as we danced to a song at the end of the movie- his face was clear of any tubing for the first time in a very long time and it was okay. He was happy. It would be okay.

When I became a Mother I never imagined I would ever need to make decisions for my child like we've been presented with this last week, month and year. It is somewhat surreal. At times it feels as if we're on autopilot in some ways- just going through the motions until his numbers reach a new low, or something is said or done that makes it feel more real. It's hard to explain.

We made multiple changes to Wyatt's valium, phenobarb and lasix doses last week. We also decreased the amount of fluid he receives in his TPN (IV nutrition) as an effort to keep him more comfortable. His body is overloaded with fluid and as he becomes weaker the fluid is quickly accumulating in his lungs. By decreasing his fluid intake and doubling his lasix doses we hoped to pull out some of the extra fluid that is trapped within him, which could make him more comfortable. His oxygen saturations are dipping lower more frequently, his breathing is not steady or consistent, his heart rate is sitting higher. For nearly a week our super kid has not been waking. Sporadically his eyes may blink as if he could be somewhat aware, but he has been unable to respond to us anymore. We believe he can hear us as his breathing changes when certain people talk to him. And Sunday, as he was struggling to breathe, Maggie snuggled in the bed next to him and the next time I looked to his pulse-ox his oxygen saturations were sitting a little higher and the pattern of his breathing had improved slightly. Yesterday morning he actually opened his eyes a little, enough for us to see them for a few seconds. He worked so hard at trying to communicate with us. He was only able to moan before he was able to make words emerge.

He asked for Sprite.

Yep. He did! I would love to know if he was dreaming or what made him ask for Sprite. It's not a drink he ever drank regularly because the carbonation bothered him. He surely surprised us. Bryan quickly grabbed his keys and told Wyatt it would take him 10 minutes to get to the store and back- with Sprite. By the time Bryan walked out of the house Wyatt's eyes had closed again and he was fast asleep. I don't anticipate that he will be asking again, but we now have a bottle of Sprite if he should.

I can't imagine he could be any closer to dying than this last week. It is likely to happen soon. But the fact that we saw his eyes again and he asked for sprite made me smile.

We couldn't make this stuff up if we tried!

Wyatt was moaning, restless and even agitated at times throughout the rest of the day. It's unclear why he appears so unsettled. I worry that he's scared, but it's difficult to tell for sure. We've been able to utilize the PRN (as needed) doses of some of his meds to calm him down and ease whatever is bothering him.

Thank you so much for continuing to pray. Please keep praying- his comfort is what my prayers are centered around these days. Thank you for all the messages of support, thoughts and prayers.

Today (September 10th) and tomorrow (September 11th) is Wyatt's hospital's annual Help Our Kids Radiothon. We've been listening from home all day today. I'm streaming the radio station through our computer. There is a list of participating radio stations on the webpage- you can tune in too! It runs each day from 6am to 6pm. If you would like to help or ever wondered what you could do for Wyatt and our family, please consider making a donation in honor of Wyatt! We would have never been able to do what we do now without the help from a large number of people at the hospital, our "home away from home".

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  1. You and your family have always been in my thoughts and prayers. And you will continue to be in them.

  2. These are not decisions that any of us as parents thought we would ever have to make. Sure, we thought we'd have to decide which sport to put them in, or which school to enroll them at, or which fabulous city to take them to on vacation. But then we are faced with mito, and all the horrible things that go along with it. I remember the feeling of taking Emily's O2 tanks and machine out of her room. Of unhooking her trach from the tubing for the last time, because enough was enough. The decision to cut her TPN volume in half because of third spacing, and then the ultimate decision to stop it completely. None of these decisions are made lightly and none of them are RIGHT. It is all awful, and all we can do is give our children the most peaceful, dignified end as we can. I am praying for you.