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. 

In the hospital…again….

So Rowan has been slowly trending down with his SATs over the last week and got to the point today where we were pretty concerned and uncomfortable with him being at home.  We went ahead and took him in.  He looks like he feels crummy, he’s a little bluer than normal…and as life goes, we don’t have any perfect gift-wrapped happy answer or plan.  They are just watching him.

Doc and I are a little concerned about what these changes mean in the long run.  It is possibly just a virus but there is still a chance that his last operation will not stick or that “just a virus” will do him in.  I say concerned instead of worried for a reason.

Worrying does no good.  Concern is smart.  Concern is keeping a close eye and keeping communication open.  Concern is paying close attention and being prepared for any decisions we may need to make.  We are concerned.

Evelyn was extremely upset when we left with Rowan.  She cried and repeatedly asked to go with us when we took Rowan away.  She is worried about him.  She wants to go up and see him and make sure he is okay.  She is scared.

But we know that this is another admission.  This is another problem that has slammed into Rowan’s path.  We will make the wisest decisions we can.  We will show Rowan and Evelyn what courage looks like.  And we will find strength in the love our family has.

After all…

He is so very worth it.