Yesterday was a big day for me in understanding Rowan’s body. The question came up “do we start TPN”? TPN is an IV nutrition. Rowan would receive all of his foods through an IV. I had seen on an adult DNR and living will form a box that said “do not give me IV nutrition”. That made me think this was something I wanted to ask hospice about before we started it.
Rowan wasn’t tolerating any food. He hadn’t eaten and kept food down in almost 24 hours and…he was HAPPY!
Yesterday morning I walked in to a smiling, playing, kicking, toy loving, kiddo. It was honestly the first time I’ve played with Rowan for a long period of time and he didn’t look like he hurt. He also wasn’t sucking on his hands, demanding his pacifier, or doing any other “I’m hungry” signs. He was happy all day. I mean ALL day. He took a nap, but when he wasn’t asleep did nothing but smile! They even tried to put in a PICC line (special IV) to do lab draws through. They tried several places to get one and Rowan didn’t even get upset. He lay there listening to music and just relaxed. Rowan was SATing higher, coughing a little less, looked like he was circulating blood better, and looked less blue.
So I called the hospice nurse I spoke with. With so much looking better (including his kidneys) it seemed weird that he wasn’t hungry, but was happy. When I talked to her she talked to me about system failure. How the digestive system starts to shut down and releases chemicals that make it so people who are dying are not hungry or thirsty. Rowan no longer is trying to force food down a digestive system that is uncomfortable and he isn’t hungry, and he’s happier. She said that with system shut down, the body releases chemicals that cause it to stop absorbing nutrition correctly and that TPN wouldn’t necessarily help him. We were also concerned that if we started TPN…we would have to stop it at some point. That is much harder to do than to say “please don’t”.
So she posed another option…if he acts hungry…feed him. What a novel idea, right? So that’s what we decided. If he’s not hungry, don’t feed him. If he starts to show any signs of hunger…by all means, let’s try it again.
Today, Rowan was even happier. He played with my nose, pulled my hair, and was SATing higher. He looks great. He hasn’t absorbed food in two days. He played all day. He smiled. He flirted. He cuddled.
Child life came and did an impression of his little hand. Then later they did hand prints of Evelyn and Rowan side by side on cardstock. We will forever treasure those little hands together.
Meanwhile…Evelyn noticed the picture of a sun on Rowan’s door, that is also through out the floor. She called it a golden flower…despite my insisting that it is a sun. (remember this detail, it comes in handy later).
After the handprints, Evelyn went home for a nap and I stayed with Rowan.
Rowan’s pulmonologist came back and seemed very surprised at how much better Rowan looked. …and then he asked if anyone had talked about doing a J tube for Rowan’s feeds. A J tube means the button in his stomach would have a tube inside it that went into Rowan’s digestive system past the stomach. It means he would be constantly hooked up to the feeding tube, and it would likely mean another Nissen for Rowan as well (so he can’t throw up). This was something Matt and I dismissed really because we aren’t interested in more interventions.
Then the hospice doctor came by. Talking with him made me feel even better about understanding Rowan. We are finally listening to him. He isn’t hungry. ANY parent knows that a 7 month old who hasn’t eaten in nearly 3 days should be inconsolable. That isn’t him. He isn’t acting hungry and he’s happy. We are going to enjoy it and we will not touch him.
…so after talking with hospice and feeling like we truly understand Rowan and what he is going through, we feel like this is truly the right choice for our son. Especially since the “solution” to his eating is either TPN which we don’t want or a J tube which we don’t want. We are ready to give our son the dignified and peaceful death he is showing us he is ready for. This “happy Rowan” is a gift. We understand it as such, and not a sudden turn around.
So Doc calls the physician taking care of him in the hospital to fill him in on what was said by hospice…and the physician tells him that our pulmonologist has (get this) requested a meeting with all of Rowan’s specialists. ARE YOU KIDDING ME!?!?!?!?!? We BEGGED for that meeting for the last few weeks. Do you feel like hospice is a bad choice now? Because that seems like a TODAY conversation, not a MONDAY conversation!!!!
To say I feel sick to my stomach is an understatement. We have grieved over this decision to change Rowan to comfort care for MONTHS! This wasn’t decided easily. This was decided after 7 months of putting on a brave and loving suit of armor ever day to fight through all of the suffering Rowan endures on a daily basis. It comes after watching 7 months of a dwindling quality of life. It comes after meeting with child therapists, and talking to many doctors, and more “all nighters” than med school or college combined FIGHTING for Rowan. I have always fought for what was best for him. My gut has been right. AND NOW…Now that he isn’t receiving full nutrition and we’ve discussed end care…now we’re having a meeting?? I have this terrifying idea of Rowan being ready to let go..and them some ethics group coming in and telling us that we have to do something to Rowan that lowers his quality of life but makes him suffer and us watch it for even longer. Doc told the physician we were concerned about this request for a meeting and asked if there was a thought that hospice should be reconsidered. The physician asked that we discuss it tomorrow.
SO I will not be sleeping.
At all.
I’m going to sit here and cry and sob because I have fought so hard for Rowan…and I never imagined that I would have to fight to give him a death that wasn’t as horrific as parts of his life have been or worse.
So we went home.
I put Evelyn in bed, and tried to go through our routine. We laid down. I covered her up. I read her “I Am a Bunny” and sang her a song. During her lullaby I started crying. The following happened (remember the golden flower on his door?):
Evelyn: Mom, why are you sad?
Mom: I’m sad because Rowan is sick. I miss Rowan. I wish he wasn’t so very sick.
Evelyn: Mom, it’s okay. Rowan is going to be okay. I will sign him a song. He has a golden flower.
AND CUE ME LOSING IT!
Let me back up.
Since Monday, Evelyn has been dressing up as Rapunzel from Tangled. She asks to see the movie over and over again. She always wants to be a “princess” and wear her Rapunzel dress.
Tangled has a golden flower in it…and when you sing, it heals people who are sick.
If only there was a golden flower. If only I could sing to Rowan and he would be better…if only I could do that for you Evelyn.
If only fairy tales were real.
But they aren’t.
What is real is that my son has been happy and playful and loving for the last two days. When that changes, we will adjust treatment. What is real is the fight that we survive daily to do what is best for Rowan, the fight that has seen many battles. And we will win the war.
What is real is the incredible love that binds our family together. The love that already has saved Rowan…it saved him from a meaningless life of suffering. He has had a beautiful life, despite the suffering…because of the love we have for him and one another.
That is his fairy tale. It starts with love. It ends with love. And the love he’s taught us will live on. Golden flower or no.
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