July 13th

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. 

July 11th

Today Rowan’s BUN rose to 17 and his Creatin rose to .66.  His kidneys are continuing to show signs of failure.  He is also having trouble with constipation and is no longer tolerating food.  He throws everything back up.  They started him on IV fluids today to compensate some for the lack of food he is getting.

This evening they took his blood pressure.  We want Rowan at 90/60ish.  Rowan’s legs were 40/15 and his arms were 70/20.  That’s too low.  The thought is that the medicine he gets to make him less puffy, coupled with losing fluids by throwing up has significantly dehydrated him.  They are turning up his fluids and we will wait to see if that works.

From a non-medical standpoint, Rowan seemed very calm most of today.  He was upset when he threw up or gagged.  He did have some time this afternoon where he smiled and played and was very responsive while I talked to him.  I love those moments where I see him and for ten minutes, we are fine.  Nothing is wrong.  We’re just happy to see each other.

Evelyn spent some time with him at the hospital.  She asked me to go see him this morning.  After she started getting a bit antsy in the hospital room, we went to a nearby park.  While she was up on a jungle gym, she looked down and suddenly got very scared.  She froze and started crying and screaming for help.  When I picked her up and got her down, she told me she wanted to go back and see Rowan again.  So we did.

Early afternoon, Evelyn and I had a girl date.  We went to buy some dresses.  The last few days she LOVES dressing up and asks to be called “Princess Evelyn” so we went to the “Princess Store” (aka Disney Store) and picked up some dazzling shoes and pajamas.

We are hesitant this evening since Rowan’s blood pressures have been so low.  Whether or not these things turn around is a big indicator in what our time left looks like.

We decided to take a break from the hospital for sanity’s sake and went home to spend time with Evelyn.  When we got home, our house was spotless (including Evelyn’s nightmare of a room), our laundry was done and folded, dinner was in our refrigerator, and breakfast for several days was dropped off.  Thank you so much to my amazing friends at JWI. 

You have no idea how much your presence and aid means to us.  It’s wonderful to get to be Rowan and Evelyn’s parents right now.  To just rest at home so we can handle the emotional pounding the next day will bring.  It truly made a giant difference in our day.

No Long Term Solution

Doc and I have known for the last few weeks that we were rapidly approaching a dead end.  Rowan isn’t showing any signs of improving and is instead slowly getting worse. 

Yesterday we noticed his discomfort level was much higher.  He had turned much bluer and puffier and was working harder to breathe.  Despite how heart wrenching it was for us to take him to the hospital, we knew that at this point he needed to be taken in.

We were grateful that Rowan’s primary care doctor was able to get him a bed so we didn’t have to go through the ER.

Rowan is now at St. Francis, receiving treatment for some of the symptoms that he has that are contributing to his discomfort.

After meeting with the pulmonologist today, we feel like this is very likely a lung issue.  Rowan has been on a ventilator for a long time in his short life and that can cause lung damage.  That is likely a sizable part of the problem. With all of the procedures he’s had, his lungs have likely sustained some CF damage.  On top of that, there was a cath Rowan had in March that showed some varying pressures in his pulmonary vessels meaning he might have some narrowing that is causing that too.  There isn’t really a fix for these things.  Several months (like 6-9 months) with no ventilation and good health might help his lungs recover, but that is not likely a possibility for him.

We are trying some antibiotics right now just in case there is a lung infection.  We should see some improvement over the next few days if they are working.  We will re-evaluate at the end of the week.

We are going to talk to the palliative care team at St. Francis tomorrow to decide what end of life care looks like for Rowan so we can set up hospice should he need it.

Every time he smiles I start to tear up.  I am so proud of him.

Rowan is Home Again

Let me precede this post with a plea.  Do not mistake my frustration for anger.  I may sound angry.  Not the case.  There is no one to be angry at.  Everyone has done a great job of helping Rowan in whatever capacity they can. There is nothing to be angry at.  But I am frustrated.

Ok, so Rowan went to the ER on Saturday.  His oxygen saturation levels were sitting in the low sixties and high fifties for nearly two hours which was not ok.  He was also acting very uncomfortable.

He went to the hospital and was admitted.  While there, he was SATing at a better level, but still dropping into the low sixties every now and then.  He also became sleepier and was acting like he was in pain. Bad.

So they did a heart cath to see what was up.  Rowan’s aortic arch had narrowed a bit and needed ballooning.  Yay! A fixable problem!  Wahoo!  Rowan’s pressures looked fine overall.  No worries from what his heart looks like.

Rowan comes back from Cath smiling and seeming like he feels pretty good.  He continues to drop into the sixties. 

They turn his oxygen up.  He is still dropping but maybe not as often.

They send him home.

WHAT?!? So he had a cath where they fixed something to make him better and he needs MORE oxygen?? ARRRGGGHHHH!!!!!!!!

But here is the issue.  His heart looks fine.  Function is good.  There is not an answer for why he is dropping off like that.  His lung pressures were fine during the cath.  He has no reason to be having lung trouble.  So no answers.  He had a CT done, no visible problems.

So we have nothing to treat.  We have no “cause” of the problem.  So cardiology says he is fine from a heart standpoint and can go home.  Pulmonology doesn’t see anything wrong to address.

So they have no reason to keep him in the hospital.

Ok. So Rowan is home now.  He likes home.  He’s smiling.  Wahoo.  But we don’t know why he is doing this.

The hope would be that it will just go away and he will slowly climb up to higher SATs and we can get him off the oxygen.  The HOPE.

The reality is that this has not been what Rowan does.  Rowan doesn’t really get “better” and if he does it is very short lived.  So if we don’t have anything to do to help him, there isn’t a reason to keep him at the hospital when he can be at home and happier. 

So we’ll wait.  We’ll keep him here as long as we can. 

AND NOW

something fun!

Rowan had his first bath today! In the sink…because he smelled really bad when he was discharged.

He didn’t hate it. 

Success.

Post Glenn Heart

So Rowan’s heart works very differently now that he is “Post Glenn”.  I’m going to attempt to explain how this works.  At the top of the picture, you can see where blue blood (unoxygenated blood) is returning from the upper body.  It goes straight to the lungs to be oxygenated.  Then it travels from the lungs (the red blood you see) into the heart.  Blue blood (unoxygenated blood from the lower body) comes into the heart as well.  Here the blue blood from the lower body mixes with the red blood that has been oxygenated from the upper body to make “purple” blood.  That purple blood is then pumped out of the heart to the rest of the body.

The final stage of a repair like this is called the Fontan.  In that surgery, the blue blood from the lower body will also go directly to the lungs.  The heart will only have oxygenated red blood in it and it will pump that to the rest of the body.  It could be a few years before the Fontan comes up for Rowan.  In the meantime, he will look a little dusky/blue still because his body is circulating purple blood.

Raising Money for the Cystic Fibrosis Foundation

 

SO many of you have asked to know if there is anything you can do for us.  Whether you live here or there – whether you know us well or not – here is something you can do.  I know people are signing up for 8 million different 5ks to raise money for good causes, but this is one that I am asking all of you who have been moved by our story to take up as a personal one. 

Cystic Fibrosis is Rowan’s archenemy.  Think of his heart defects as the bad guy in the first movie and once he beats it, you find out about the evil emperor.  CF is that evil emperor.  Like Palpatine.

The good news is that the Cystic Fibrosis Foundation has been funding revolutionary research.  Gene therapies, drugs, treatments that prolong the life expectancy of children with CF and may eventually erase CF as a threat.  They are the rebel forces, and they need your help to get enough resources and ships to take out the Death Star.

Star Wars references aside, CF research is something we are very passionate about aiding.  The Pubcrawl in August is our first event with the CFF and we want to make a bang.  You can help.  Please read the letter below, and if you can, add something to our cause.  I don’t care if it’s $5.  I don’t care if it’s $1.  It all truly helps.

Thank you.

http://www.cff.org/LWC/ElleFowler

When?

Rowan is still dropping lower than we’d like in SATs.  He is breathing a little harder.  He is coughing.  He seems uncomfortable and like he feels bad.  His face is a little puffy.  And Doc and I are getting what smiles we can, but at the same time, wondering, “When is he going to get better?”  When?

If he’d had a virus, it should be better.  We haven’t gone anywhere, so we don’t know how he would have picked up any other ones.  His virus screens have all come back negative.

So – he is still needing oxygen and he is still dropping his saturations.

We feel like through out Rowan’s life this is what we’ve seen.

Day 1 – he crashes and they think his ductus is closing – echo shows that didn’t happen.  No true explanation.  They wait for his Norwood.

Norwood happens.  Rowan takes 2 months to get extubated.  Rowan develops tons of chest fluid, no one knows why.  It eventually goes away.

Rowan is extubated.  Rowan gets off oxygen.  Two weeks later he starts having trouble dropping.  He eventually is put on oxygen.

A cath reveals that he has pulmonary hypertension. 

It is treated.  He gets slightly better.

Rowan starts having serious withdrawal issues that put him in to shock.

Rowan gets off the oxygen for about a week and crashes.

Suspected virus, no confirmation.  Cath reveals slightly improved pressures.  Glenn is scheduled.

Rowan continues to SAT everywhere.  He is unstable, needs varying oxygen levels.  There isn’t a clear explanation for his problems.

Rowan has his Glenn and a hole in his heart is cleaned out that is thought to explain his volatility over the last few weeks.  Rowan gets off the oxygen for two days and then suddenly drops SATs into the 60s, requiring oxygen.

Rowan continues to drop lower and lower, even with oxygen.

So at this point. I am stopping to look at the entire story.  With so much that has been unexplained through out Rowan’s medical life, I feel like we are missing something.  I feel like there is a piece that we haven’t found yet.

So what has happened with him now doesn’t make sense to us.  We are going to ask for a few tests.  We are going to ask for some imaging as well as consider the possibility of doing another Cath on Rowan to see if there have been any changes in the last two months.  We know that the hole tried to close so maybe something else happened too.

If we look at all these things and we cannot find something that clearly explains these declines, then we will be asking for a conference with all of Rowan’s care team.  If Rowan is declining, but there is no solution to it, then I don’t want to ask Rowan to fight a ghost.

We are also now working on trying to get some assistance to help us cover a nurse in our home when Rowan is next able to come home.  We want to be able to be Rowan’s family more and his caregivers a little less.  I wish I could, but I have to admit that while I could handle Rowan’s care when it was temporary, looking at the long term, I cannot do all of the therapy, medications, oxygen regulation, and monitoring that it takes to care for Rowan 24/7. 

Evelyn is still really struggling with Rowan being gone and our time split between being with her and being with him.  Today we took her to see Rowan and she wanted to sit in “the cage” with Rowan.  I think she is actually scared.  We are trying to keep it together as much as we can around her, but I cannot protect her from this.  I can only model how to be strong but not lose you warmth and kindness in the process and hope that she learns to cope, as unfair as it is for a 2-year-old to have to.

We live with confidence that we have absolutely given Rowan the best we possibly can everyday.  We play.  We smile.  We live in a way that we do not regret.  He has taught us how to do that.  We trust the choices we have made and we will continue to make them - together.