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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  1. Pray hard. We are seriously here if you need anything or need to ask questions about things only a family like us would know.

    Hospice is great. Not an end but a route to give you boy an girls a good life filled with quality! You guys are making hard but really good descions!

    Tell Wyatt we say hi!!

  2. Praying the transition home can be with as little bumps as possible!! You continue to make such difficult and emotional decisions with much love and thoughtfullness!!! I will continue to pray that he will be comfortable and bounce back like he has so many times before. You have an amazing one there....

  3. Glad to hear that the process for home is starting... having hospice on board should be a very good thing for everyone. Hopefully they will be able to compliment his care in such a way that he is able to weather more issues at home! These are hard choices nonetheless, and I know you must be hurting inside even though you know it's the best choice. Hugs, and prayers for Wyatt to bounce back!