Friday, April 25, 2014

We choose to be happy

Oliver isn't doing very well. He's been fighting pneumonia since last week and he just can't seem to fight off this latest bug. He was started on an antibiotic right away, just like always. Days pass and we didn't see improvement, usually he starts to improve by Day 3. Day 3, Day 4, Day 5 pass and he's only getting worse, we need to try something else. He's so congested and his breathing is labored, not a "gasping for air" type of labor, but a drowning in his own secretions labor. We suction and suction and the grossness keeps coming back. For his sake, we have always called his secretions, "yuck yucks" As in "Oliver, I'm coming over there and I'm going to get all those yuck yucks. Okay?" He always breathes easier for a little while afterwards, then they come back. Repeat.

 We lay him on an incline for hours, he's on O2 around the clock, we sleep right next to him. He's using all his accessory muscles to help him breathe. It means he's working very very hard to get air and oxygen into his body. His lungs aren't strong enough to do it on their own, so his other muscles start to help the lungs push the diaphragm up so he can expel air. This is a bad way to breathe, the human body cannot do this for very long, it's exhausting work. Oliver is exhausted, on top of this type of breathing(called "pulling") the medicines we've been giving him to keep him comfortable make him very sleepy. He's been sleeping a lot, close to 20 hours/day, but even when he's sleeping he's struggling to breathe. 

 We start him on the second antibiotic and almost right away it starts to cause him major gastrointestinal distress, cramping, diarrhea, he was dehydrated and miserable. We stop that antibiotic. Now what? There is another option, but it's what our nurses call "a big gun" antibiotic that is even broader spectrum than the second, meaning it will likely cause even more gastro issues. It's also in the same family of antibiotics that caused him problems in the past. We ask about trying one that worked well in the past that we'd taken a break from because his body had stopped responding to it, but maybe now it would? 

Our hospice nurse says she's going to be completely honest with us, she's not so sure that the "pulling" is caused by the pneumonia. Yes, he has pneumonia, but there might be more at work here, like his tiny body is tired, and starting to give up this fight. He's been fighting for just over 2 years.

 Recently his hands and feet have been going from hot to cold, hot to cold. He's had a very rapid (133bpm) heartrate and a high fever of 102*. He's had mottlingcyanosis, Cheyne–Stokes breathingall of which are signs of someone dying. We've seen a few of these symptoms before and he's overcome them, he's rallied and gotten better. We've never seen this many symptoms all at once though. But at the same time, the mottling comes and goes, the breathing improves and worsens. His face will look rosy and pink, and then blue. It's seriously messes with us, we don't know what lays ahead, we just don't, and so we smile. 

That may sound crazy, but we smile, we laugh, we talk, we reminisce. We will have our whole lifetimes to be sad, cry and miss our beautiful blue eyed boy. A boy who has touched the lives of thousands of people, thousands of people who will hopefully learn that life is short, that life is precious, make each moment count. Every. Single. Moment.

So here we are, maybe in his last moments, maybe not, but it doesn't matter, we're not going to spend them being sad. We're holding Oliver and laughing about the time he climbed climbed on top of Pippa and tried to ride her, laughing about the time he shoved cookies into the DVD player, and thinking he was great at hide-and-seek by hiding behind a curtain with his chubby little feet sticking out the bottom. We have our whole lives to be sad, today we choose to smile and be happy.










18 comments:

  1. I smile but my heart aches for Mom and Dad. Praying for all of you.

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  2. My prayers have always been for Oliver's comfort and your continued strength and courage. I am humbled by all three of you. You have shown so many of "us" the meaning of life. No one. No one could have been better teachers. My heart goes out to you...

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  3. Beautiful blog and stunning photos. As mom and dad, you are truly amazing people. Oliver, keep fighting, if you can.If not, find comfort and peace. God Bless you.

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  4. As I parent, I can't even imagine how your hearts are holding up through all of this. I guess you just have no choice. You have all been so strong for so long. I pray that Ollie pulls through this as he has in the past but if the worst should happen just know that he goes with God in peace and comfort.

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  5. Prayers, peace and joy and comfort to you on this beautiful spring day.

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  6. It really is tough to read. Ollie's parents are just wonderful. I can't imagine what you are going through. Just know I pain with you and the community is here for you. Lots of love- mike D.

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  7. Katie & Chris:

    You guys are so exceptionally strong! Both of you, as well as Ollie and his sister are always in my thoughts. Sending prayers for you from Norwich!

    T.J. Jeznach

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  8. Your amazing.. thoughts and prayers go out to you.

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  9. Rachel Taylor-FromerthApril 25, 2014 at 10:55 AM

    Everyone should enjoy the day for Oliver! No matter what is going on in our lives. If his parents and family can be happy through this no excuses for the rest of us! Love and Prayers <3

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  10. You are so strong and such an inspiration, though I know it's probably something you'd rather not be in this case. Your posts are so beautiful and touching, and my heart breaks for your family. But you are so strong to realize the beauty and strength in a smile, and giving that to Oliver as his last gift. You don't want to scare him with crying and upset faces. Let him see your light and love and carry that image with him always. My prayers continue to go out to you and your family. And I pray for comfort and love and healing and peace for Oliver. And strength and love and peace for you as well. God bless and be with you always.

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  11. I ask our Lord to carry you all. I send you prayers of strength and comfort....

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  12. Praying for your family...you will be on my mind and in my heart. God bless Oliver and his truly amazing parents. Chris, anything I can do for you guys, please let me know.

    Susie Clifford

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  13. Prayers to the family....

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  14. Prayers for this beautiful child that when it's time he goes peacefully into the arms of our Lord!

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  15. Praying for you all. Thank you for the updates.

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  16. Thinking of you and your family during this trying time.. Sending love and prayers.

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  17. Oliver is so blessed to have you as parents. My prayers and thoughts are with all of you ♡

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  18. can you try aloe juice? Check w MD but dont think it counters anything and really really works to clear lungs. Helps with bronchitis, my whole family. Prayers for your little. They come here knowing. They come in love. I pray he will stay.

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