Tuesday, October 23, 2012

No time will ever be the right time

Last night was very scary.

Around 6pm we went for a fall walk around the neighborhood. Ollie was enjoying the colorful leaves falling down on him in his wagon. There were lots of dogs to see and fun Halloween decorations, Daddy made Ollie's wagon do crazy donuts in the cul de sac. We had a lot of smiles.

We got back to the house and we were resting in his brown recliner when out of nowhere Oliver had a major change in his breathing pattern. He started breathing very quickly, more than 30 breaths a minute, it sounded like he was running up a hill.

We called our hospice nurse who instructed us to give him some morphine to calm the breathing(which is what we were about to do) and call back in 20 minutes. His breathing didn't improve, but it was all very strange, everything else about him seemed pretty normal. His coloring was good, his lips were nice and pink, his fingers and toes had good capillary refill, nothing suggested his oxygen level was low or could explain why he was breathing so quickly. He wasn't gasping for air, he was taking deep breathes, just very very quickly. We were even able to get him to laugh and smile. Nothing was adding up. We couldn't get his breathing to slow down.

We called back the hospice nurse and held the phone up to Oliver so she could hear what we were hearing and she became very concerned. Go Google "change in breathing pattern" and you'll see why. In her line of work, sudden changes in breathing pattern usually mean death is approaching in a matter of hours or days. She had just been at the house 2 hours earlier and had given his lungs a double thumbs up. Perfectly clear, no more pneumonia. So all of this happened very suddenly. At her visit we had told her that he had been sleepy most of the day, so between that and his breathing she was very worried. She told us we really had two choices, we could 1) stay home and and rock him to sleep as usual using the morphine for relief or 2) we could go to the ER. She said that she couldn't be 100% sure, but she was very concerned about the breathing and that could mean things were "progressing". I think that was her way of saying she thought he might be dying.

We asked if we could call her back.

Chris and I talked and we decided to keep him home. It was the best decision for Oliver. What could the hospital do for him that we were willing for them to do? We don't want a ventilator keeping him alive and our number one priority is Oliver's comfort. There is nothing else at the hospital that could make Oliver more comfortable that we don't have at home.

We have the same "comfort meds" as the hospital, we have his familiar and comfortable surroundings, we have Pippa, Elmo, Mickey Mouse, Curious George Jack in the Box. He has his own bed, his warm blankets, and our hugs and kisses. The hospital has needles and pokes, doctors that know almost nothing about his disease and run test after test, machines that spit out worrisome numbers and loud noises and bright lights that prevent sleep.

We wanted him home, I think we will always want to have him at home.

We called her back and told her our choice, she supports us 100%, no matter what we decide. She knows we're making our decisions based on what we feel is best for Oliver. She has a heart of gold and truly cares about all three of us. She told us to call her anytime, day or night, and call her the next morning.

We ran Oliver a warm bath, read books, cuddled and tried to enjoy ourselves, tried to ignore the rapid breathing, tried to ignore the fact that our nurse thought he could be dying. Deep inside myself, my heart told me that he was okay, that this episode would pass, that this wasn't his time to go. I told myself the breathing must just be another strange MLD thing.

But you know, I wonder if I'll always feel like that, if I'll always feel like "No way, it's not his time. He's too young."

I'm his Mommy, will I ever look at him and think anything different? How will I ever look at him and actually think it's his time to die? My toddler, my baby boy. No Mother or Father should ever have to look at their child and have those thoughts. I wonder when his time comes will I still deny it.

We took the two twin mattresses from the guestroom/office and laid them down on the floor in his room. There was no way we could sleep across the house from him, we needed to be right there with him.

We rocked him to sleep and his breathing slowed a good deal. Finally. We laid him down in his bed (which is at a slight incline) and we went to bed right next to him on the mattresses on his floor. All night we listened to him breathe, in and out, in and out. I was in a strange half awake/half asleep state, hyper vigilant, dreading the sound of silence. Silence that would scream volumes. Silence that would mean we had lost our child. But we didn't lose him, we listened to his sweet snoring all night. It was a beautiful sound.

Today he is breathing pretty normally.

We know we will lose Oliver, months, years, we don't know. We will have to say goodbye to his sweet little smile, his baby blue eyes and kiss his chubby cheeks for the last time. I'm glad it wasn't last night, but if it had been, it would have been a peaceful passing. He wasn't in pain, he was happy and comfortable. More than anything that's what I hold hope for now. It's all we've got and all we can give him. Comfort, love and peace.


  1. Prayers for your continued strength and for much more memory-making time together.

  2. Prayers for strength & peace

  3. Dearest Katie...

    When you were pregnant with Oliver I remember telling you to always trust your instincts. All the doctors and all the medicine in the world can never compare. Never let anyone tell you different. When the time comes even though every fiber in your being will tell you not to let go, I think you will know in your heart when it's that time. Even though I believe in God, I also strongly believe in signs and I truly believe that Oliver will somehow let you know when it's that time. Its natural to have regrets but I don't think that Oliver has any. I can't imagine that there is a child in this world that could have received as much love and care that you have provided to Ollie through his life. All children want is their parents undivided attention and that is exactly what you and Chris have given him. Every photo that you take of Ollie reflects the love that he feels for you and his family. No one can help but see it. Never question what you have done or what you could have done. Everything that has been done and everything you are doing is exactly what he needs. Remember...a mother's instinct.

    With all my love and prayers my friend...Nicole

  4. Thank God for Katie and Chris. Ollie is an angel on earth and so are Katie and Chris. I am so sad for your pain. I am so impressed by the power of your love and your clarity. Ollie is experiencing more love and more joy than most people experience in their entire lives. For the rest of my life, I will celebrate Ollietober and remember your beautiful boy. Sending love and hugs. <3 Jen

  5. You two are just incredible people, the grace with which you are handling all of this amazes me each time I read a new post. You should really think of publishing this blog as a book, you have no idea the countless people you could help with your amazing strength. I wish all three of you so many more days to love each other and peace in your hearts.....

  6. Katie and Chris, I am so sad for your pain and amazed at your strength and in awe of the love that you share together to make Oliver's life all that you can. You are the bravest people I know. Sending the biggest prayers and love for you all.

  7. Your strength and love for Ollie amazes me. Reading this brought me to tears. Praying for you everyday.

  8. I've been following your story from afar. This post brought me to tears. I can't express how sorry I am for all of the pain that you are experiencing. More than anything I commend you for your strength -- I only hope to love my children as deeply as a mother the way that you so clearly do. You're an amazing woman, and your son is a lucky little boy to have you. I think of your family, often.