Sunday, October 2, 2011

Our Weekend.

Wyatt's body is tired and struggling but he's holding his own. We can't really ask much more than that at this point in time. In the course of this week our daily meetings with the doctors involved the subjects of lab values, pain control, new treatments and medications, along with the delicate conversations of hospice care and DNRs. And the range of emotions that come with each.

As I sit here typing Wyatt is laying in bed, holding tightly to his stuffed bears watching TV. His bi-pap mask on his face providing respiratory support. He's only able to tolerate removing the bi-pap (and going to nasal cannula) for very brief periods of time as his body is struggling to breath. His respiratory rate has increased further since I last posted and in response we've increased his pressures on the bi-pap machine twice today, hoping to open up the deflated, collapsed areas of his lungs. Blood pressures now also a concern, have been steadily increasing since I last posted, as well. After talking about it with the doctor we started a medication to lower his pressures, in addition to a "rescue" med to bring them down further until the medication has enough time to take full effect. It's been a struggle to keep his potassium up at an acceptable range and there were great concerns with it just yesterday, but today, after multiple infusions of potassium it appears to have increased enough we're out of the "critically low" area for now. His body is beat up, from both the infection process and the harsh medication used to combat it.

This life is a tough one, I don't think many would doubt it. Repeated hospital stays can be hard, this Summer (and now Fall) we've spent more time in the hospital than out. But as we experienced during this stay, having friends just down the hall has been refreshing and at times very comforting. When I'm feeling like a caged animal and so sick of seeing these same four walls of our room, I've been taking a short walk a few doors down to visit two other mito families that we've come to befriend that are inpatient now too. While I was sad to see them arrive, there were times that I was so relieved that they were here. I'll be excited for them when they're on their way home, but will miss the company and friendship while we stay.

Friday evening we had special visitors visit us from the Make-A-Wish foundation. While the visit didn't go as we had hoped and Wyatt was feeling very poorly, the process was started for Wyatt to receive a wish. I hope to talk with the organization early this week to plan further and clarify Wyatt's wishes more. I'll share more once things are more organized and the wish is in motion.

While our Make-A-Wish visit didn't go as smoothly as we were hoping Friday evening, Saturday was the perfect day for a great surprise! I had emailed with Maggie's teacher earlier in the week and she told me that Maggie had shared with her that she was feeling sad and was upset that Wyatt wouldn't be home for her Birthday on Saturday. I knew this weekend would be hard for her and struggled with how to handle the situation. As I was talking it through with several people that had been gathered in Wyatt's hospital room at that time, a nurse mentioned putting together a party for her here at the hospital. Wyatt would be able to attend in his bed (he's unable to sit upright) with all his gear and the nurses were willing to rearrange their schedule so that a nurse would be with him the entire time. Wyatt liked the idea and was excited that we could keep it a surprise from her! Let me tell you, it's very possible to pull a party together quickly when you have family friends that happen to be in the hospital at the same time, that just so happen to have siblings who are also friends with our children. Instant party! We talked to the best social worker in the hospital who was able to reserve us a special room for our celebration and was even able to order us cupcakes from a local bakery. Grandma and Grandpa scoured the stores for Justin Bieber party supplies and related necessities. And come 1pm Saturday afternoon most of the party goers had gathered in the room waiting for the newly double digit Birthday girl to arrive. She walked in as we all said "Surprise!" with a look of uncertainty on her face, and turning shy once she realized we were all there to see her. She rushed over to give me a quick embrace and turned right around, leaning across the bed, to give her brother an extended hug. It meant so much to her that he was there on her 10th birthday. The perfect surprise!

Thank you all for the thoughts, prayers, love and support. Each one is appreciated...we coudn't do this with out!
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  1. I don't know what to say. I sit here trying to come up with something to say to make things better for you. But I can't. I am praying. I don't know your family personally but my heart is still breaking for you as I learn more and more about this horrible disease called Mito. I do wish I could be more of a support to you and Wyatt. Just know that I am praying!

  2. I am praying for you all constantly. I'd love to come visit with you if you are up to it? I live about an hour away but could make it up there probably one day this week no problem. I can bring you and Wyatt anything you might need.

    Lisa Scruggs

    Samuel hopes Wyatt feels better soon.