Saturday, July 27, 2013

This week.

Have you ever had that feeling that you're sinking? One thing after another almost pushing you further and further down. Sometimes, when it happens quickly, you don't have much time to think. You sink so quickly you hit the bottom swiftly and it hurts. It's shocking and can be very scary. But once you're at the bottom you at least find yourself on solid ground. Perhaps it's broken ground, there are large gaps and cracks. But you stopped moving, stopped sinking.

That's what the end of our week has felt like for me. We're sinking. One thing after another piled against us. Infections in his eyes, another UTI, a cracked central line, pain, breathing, coughing, choking, much talk of Heaven. I'm not sure what the bottom of this sink hole will be like for us. We're not quickly sinking, which I kinda feel is more like ripping off a bandaid. But we're experiencing a slow and overwhelming affect.

Does that make sense? 

Yesterday was too much. I couldn't put all the pieces together myself, which frustrated me and made me want to cry. I was exhausted from spending the entire night before in the ED, which left me worrying about saving his central line. I was mad at people that didn't deserve it. I was sad and a little scared. It was just a bad day all around.

We're still in the midst of making a lot of decisions that this part of life holds...will we do this? Will we not do that? We've made a lot of difficult end of life decisions already in the past couple years, but there are still so many questions to be answered and "I don't know" is my initial response to a lot of them. I haven't given up because Wyatt hasn't given up. He looks forward to Heaven these days and seems to have made peace with the fact that it will happen. But he's still breathing.

His body is not working even as well as it did a week ago. He's working hard to breath on his own. The amount of time he's used the vent this week can be counted on your fingers. It has not been much. I don't know what his CO2 is right now, which probably is for the best. He's determined and knows what he wants. Or doesn't want.

We're starting another antibiotic, Zosyn, today to combat the new infection residing in his bladder. I'm apprehensive about treating these gram negative bugs, knowing he has yeast living in his bladder too. Our boy is colonized with many different types of bacteria and yeast. My concern is once we treat this group of rogue bacteria, the yeast will again take over and we will be right back to where we started. We've been fighting this battle for months now, treating one group of bacteria or yeast to have another attack right away. All the antibiotics and/or antifungals coursing through his system cause their own discomfort, but we have decided that we do want to continue treating infections. An infection in Wyatt's body causes him increased pain, that's actually one way we can tell it's there. More pain is Wyatt's biggest fear of dying. So, treating infection to be certain that we're doing all we can to keep him comfortable makes sense.

We increased his Methadone and Fentanyl multiple times since I last gave you a more in depth update. And we again increased his Methadone yesterday. We've taken on a more aggressive approach to try to gain better control over his pain.

He's been bleeding more this week and his hemoglobin and platelets are sitting a little lower than usual. Which raised more questions of what we will and will not do...will we transfuse blood products? That's a tough one, but probably not. Will we stop his TPN? No. That is not something we will do at this time. Will we fully sedate him? Not unless it is to keep him comfortable. Will we go to the hospital? No, Wyatt has made it clear he does not want to be at the hospital. We will go to the hospital, as we did this week, to repair his central line or for something of that nature. But everything else we will do here, as we have for quite some time now.

One day at a time. It's the only way to move. Though, there are moments it's hard not to become overwhelmed by what lies ahead. And sometimes what lies ahead in that one day alone is too much to process, before ever looking to the next day or what follows.

We thank you for your support, thoughts and prayers.
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  1. I pray everyday for Wyatt and your family. May God keep him out of pain. May he grant you all the peace and understanding that only comes from him. Love, Danise T

  2. Wyatt, you are going to see and know the truth about Heaven. I can't wait to be there, too. I can't wait to meet you.

    And the heartache of your family, until they can see you again - there are no words for that. There won't be a day when they aren't aching with the missing and longing and wanting to be with you.

    It is all so hard. Longing for you to be truly well, truly free of pain

    means that you will be free of this body, too

    and when you are

    the pain of missing you will not be able to be


    God, make a way. Carry every one, all the way Home.

    Praying for everyone at your house,


  3. Ashley, I have not forgotten. I got sick last week and ended up with a small hospital stay. There are no words right now but that I pray for Wyatt every night, every single day I think about him and cannot believe how strong this 11 year old boy is!