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.

Cystic Fibrosis Pub Crawl

So the Cystic Fibrosis Foundation chapter in Tulsa is having a pub crawl to raise money.  It seems a bit weird to support a drinking event to raise money, but I am NOT complaining.

$40 gets you a t-shirt and then your team gets 2 pitchers of beer for every 8 people at each bar you get to downtown in the Blue Dome District.

Doc and I are going.  We have a team for Rowan.  It is called “Pancreatic Beerzymes”.  We’d love to have you join! 

You can find out more on facebook here:

https://www.facebook.com/events/453496234668002/#!/events/453496234668002/

Or here:

http://www.cff.org/Chapters/tulsa/index.cfm?ID=21993&blnShowBack=True&idContentType=1483&Event=21993

Once Upon a Time…

Rowan needed oxygen.  It was supposed to be a 30 day deal.  30 days, then a cath and either surgery or we redirect care.  Then Rowan went into shock, so they rescheduled.  Then Rowan got a virus, so they rescheduled.  Then Rowan got sick again, so they did a cath, decided to do his surgery, but wanted to wait a month.
Then Rowan had the surgery.
Then Rowan went on oxygen again.
We are beyond bummed that the oxygen tank is still Rowan’s accessorry to bear.  It’s heavy to cart around.  He hates having it blow in his nose and constantly rips it off.  We don’t sleep because of said ripping.
The current thought is that Rowan is just adjusting to his new blood flow and needs a little help.  In a few months he should level out and not need the oxygen, especially once this “virus” he currently has clears up.
So we are no where near that place in life where you feel like the worst is over and you are living the dream you worked hard for…which when we started those original 30 days I really thought post-Glenn would be like.
We are trying to remain hopeful, that one day Rowan will be oxygen free and up running around.  One day he’ll be strong enough to hold his head up for long periods or sit up or crawl on his own.  One day he’ll eat.
Until then, we are waiting on our happily ever after (where Rowan slays the evil oxygen dragon and rescues the pulmonary pressure princess and we all live in a big castle).
Once this virus thing is over, we are hoping to have lots of people over so we don’t feel so lonely and isolated.  We miss other people.

Home

So Rowan is still sick with some sort of virus.  He hasn’t had anything other than a brief low grade fever and a need for minimal oxygen, but he definitely feels horrible.  Yesterday, any waking moment he had, he screamed.  Not like “crying loudly” like high pitched OUCH OUCH OUCH screaming.  Today, we get lots of happy smiles…then some loud screaming and whining mixed with a few screams.  So I think he’s feeling better!

We had some unexpected troubles this hospital admission.  For one, NONE of the nurses were able to give him the CF enzymes he needs.  They are hard to administer, granted.  It took me about a week to figure out how to give them correctly and get them all in.  But we had a nurse tell us that one of his night nurses just gave up and didn’t give them at all during their shift.  Not okay.

He was supposed to be transferred to a 3 to 1 level of care (three patients to one nurse) but when he was transferred, his nurse had 5 patients.  Ick.

So we felt like bringing him home, despite him still having the rash, was the best route for him.  We couldn’t be at the hospital all the time to give him his CF medications, and he definitely needs them.  We felt like at this point, he’d be happier at home, he would actually get his medicines correctly and on time, and people statistically heal faster at home than in hospitals.

So the only person who slept in our house last night was Evelyn, haha.  Rowan was horribly uncomfortable and felt obligated to let us all know about it. 

Evelyn is happy he’s home.  She keeps climbing his crib to talk to him.  He’s started playing with toys and is rolling from back to side constantly while trying to get comfy.

We expect another week or so before he is totally over the virus and another 3 weeks or so before he is “recovered” from his heart surgery and can be held in positions that are still uncomfortable for him now.  Doc goes back to work the 1st, we we’re trying to enjoy this brief time we have where we are all together.

Well, Close Enough

So Rowan had a dye study done on Wednesday.  They tried to give him Barium in a bottle (which prompted a giant panic attack from Rowan and a ton of aspiration) so all of the dye went straight to his lungs. 

Good news: When they tried thicker things that were like honey or pudding, he didn’t aspirate them.  So we aren’t hopeless to get him to eat by mouth, it’s just a long road.

So – after the dye study, Rowan dropped SATs and has needed oxygen off and on.  This is almost definitely due to all of the Barium that he now needs to work out of his lungs.  This could take several days.

While it isn’t ideal to me that he comes home needing oxygen and constant monitoring, we also know that when he is home, he gets fed on time, he gets meds on time, and he gets more frequent diaper changes because he is our only patient, while his nurses have had as many as four other kids to take care of.  Plus…he’s happier.  And Evelyn can’t wait for him to come home.

So our first week at home may be a little more difficult than we’d hoped, but we want to take him home anyway.  He has a few tests this morning to see if we can.  If not today, soon.  His room is ready.  I’ve (almost) caught up on cleaning and laundry.  So hopefully home today!

Frustration

So Rowan can’t swallow correctly.  Granted, he was screaming and upset through most of the dye study he had done (from my understanding)…but basically all of the dye went straight into his lungs.

I have no idea what that means long term.

Other than lots of frustration.

Oh – and that he is now back on oxygen from inhaling lots of dye.  Great.

He Likes Me

Ok…so, I can’t even tell you how much I so don’t care about his medical stuff right now (which is all great by the way).

Today, I got to hold Rowan. No oxygen.  One IV (that was capped so not attached to anything).  I picked him up and set down.  He looked at me, smiled gigantically (like almost the horseface I make when I’m tooo happy (a la my wedding pictures)) and let out this happy SQUEAL!  That’s right!  Happy noises!!! He is making happy noises!  Coos!  Ahhs! Squeals! 

We played for a while and then I put him back in bed to help get his feed ready.  What happened?  He screamed and then REACHED FOR ME!  Both hands!!  Trying to roll over.  I got closer to him and he smiled and squealed again.  Checking to make sure it wasn’t just a fluke, I backed away and he started crying.  Which stopped as soon as I got closer again.

I don’t even know what to do.  I’m sooooo happy.  So in love.  I cannot WAIT for him to come home and play with his sister.

Drug Free Youth

Rowan is drug free today for the first time in his life.  And by that, I mean that he is addictive narcotic free.

He is free of narcotics.  No more withdrawals.  No more sweats and shakes and screams.

Today was the last day.  He is very tired.  But….

He’s Free.

Free. Free. Free.

Pictures of Progress

I don’t have pictures from each day, but I have a few to give you an idea of how Rowan’s week went.

 

Saturday

Sunday

Monday

Tuesday

Wednesday

Rowan is still pretty sedated, but you can see that he has de-puffed and returned to a humanish color!  He still has a little de-puffing to go, but he is initiating all of his breaths with less and less vent support.

He smiles a lot not. They are of course SUPER sleepy smiles…but still smiles!

Brief Update

We are seeing some really good baby steps in the right direction.

CVP (we want it between 15 and 20) has been moving down and was 17 last time it was checked!

Rowan is getting fed a whole whopping ounce of formula every three hours (with plans to increase)

Rowan’s “stop looking like a microwaved marshmellow version of yourself” medicines are working well now

Chest tube out!

Foley catheter out!

Broken Leg IV out…new one in

However we are still have trouble with the ventilator.  Rowan’s CO2 continues to drift upward…so they have had to go back up to 25 on his respiratory rate (how many breaths it gives him a minute) from a previous rate of 20.  I would really like to not end up spending two months trying to get him to breath on his own again this round…

They are keeping him pretty sleepy and sedated so we have been spending very little time at the hospital.  We call up frequently and both stop by to visit, but our daughter has really bad allergies so she can’t go up.  We have been taking our daughter to have some Evelyn and Parents time since she has been so good and had to endure a lot. 

Rowan gets all the attention and care he needs, and she is the one who gets pushed aside when things are tough.  It’s nice to get to spoil her and show her how much we love and enjoy her for a while.

Rowan is 6 Months Old Today

It is Recovery Day 3
Overnight they were able to wean Rowan’s ventilator down a little bit and his numbers have sort of normalized.  There is a number called a CVP that we have been watching closely.  As that number starts to drop, it is a sign that Rowan is adjusting to his new circulation.  It has been dropping slowly from the thirties yesterday to low twenties today which is a good sign.  We need it to continue to drop.
We also can no longer see a clear color difference between the top part of Rowan’s body and the lower part of it.  Rowan’s upper half of his body circulates differently.
From about nipples up, all of the blood that formerly returned to the heart now goes directly to the lungs.  He has puffed up a little bit and is a little blue above that line.  This is a normal thing that kids adjusting to this surgery experience.  His body has to adjust to draining the used blood directly to the lungs and you can get some build up while that happens.  We need him to start adjusting and de-puffying.
His chest tube is putting out very little fluid now.  We have asked that they feed him even just a small amount before they remove it to make sure that feeding him isn’t going to cause a substantial fluid build up.
They are lowering his paralytic to allow him to move a tiny bit and wake up some so they can continue to very slowly allow him to breath on his own.
Baby steps.  Rowan isn’t going to recover from this like he is just recovering from the Glenn, because he isn’t.  He is recovering from the Glenn AND having trouble getting blood flow through his heart.  With that ASD opened up now, he has a lot of adjusting to do, and we will give him the time to do it. 
Afterall, I don’t want Rowan home next week, I want him home when he is well and ready to come home.

Don’t Trust Him

So Rowan has a tendency to come out of procedure and look absolutely fantastic for the first day or two.  Everyone gets excited and pushes him forward in recovery…and then Rowan needs to take a step back because we rushed him.

That’s what happened yesterday.

To be honest, I was a bit distraught yesterday.  I felt really withdrawn and unsettled and anxious after they extubated him.  I had to leave the hospital for a medical procedure and when I made it back, they had already pulled his breathing tube and he looked horrible.  I was nervous that extubating yesterday was too soon and would have asked that they give him a little longer, had I been there.  I felt guilty for leaving instead of rescheduling my appointment.  His blood gases started to look bad (CO2 in the 60s) despite having PO2s in the 50s.  He looked like he was breathing harder and he wasn’t very active or awake.

He also started to get really puffy.

We had some family visit him and they remarked on how good he looked a lot but all I could think was that he wasn’t ok.  He may look good but I didn’t think he was ok.  I didn’t feel happy and excited that his tube was gone.  I was just sick with worry, despite the fact that the doctor taking care of him said everything else looked really good and that we were just going to see if he could ride out the imbalanced blood gases.  No one else was worried.  They were just watching him.

Overnight, his blood gases continued to get worse.

This morning, they decided to reintubate him and we were both somewhat relieved.  It stinks to see progress reversed, but Rowan can’t be trusted to get that well that fast.

He is now showing signs of struggling to adjust to his new blood flow.  This is pretty normal and most kids level out after a few days.  We are hoping that’s the case. 

In the meantime, he’s paralyzed and they aren’t making any real changes so we tried to stay away from the hospital this afternoon.  It’s hard to see your kid paralyzed because they always look like crap.  Tomorrow we’re hoping his levels look fantastic and we can start progressing again….slowly.

Glenn–CHECK!

Ok ladies and gentlemen.  This will be a long one.  With things that make you think and use your brain.  Bare with us.

This morning when we packed Rowan up, Doc and I were both pretty down.  We believed, based on the surgeon’s evaluation, that this could likely be the last time we had Rowan in our home.

When we arrived, we waited for Rowan to go back…and then we sat in the waiting room.

I received a text from one of my amazing heart mom friends.  She told us the mightiest angel would be pulling for Rowan…her son, Oakes, passed away last night.  Devastated is not a strong enough word for how I felt for this family.  He died in her arms, with his loving father beside him, and the CICU staff, who were family for him, standing vigil.

Rowan has some of the clothing Oakes’ outgrew.  I put him in one of Oakes’ outfits today on purpose before we left, hoping a little bit of that mighty magic would rub off on him.

My Aunt Kathy and Uncle Gary came to wait with us.  Gary is a chatterbox and incidentally perfect company during a long wait.  Having my aunt there too made it even better.  She is so compassionate.  We sat there and talked.  And waited.

Phone call: We started

Phone call: He’s on the heart/lung machine

Cardiologist comes out to talk to other families: Goes over results with a different family of a cath, tells another family they are almost ready for theirs, turns to us.  “He’s looking good.  I stepped in.  His ASD looked a little blocked on his TEE (fancy heart echo done in the esophagus) so they’re going to open it up a bit.

Phone call: His ASD was closing so they opened it up.  Surprise fix, not part of the plan.  Starting the Glenn. Next phone call when he is off the heart/lung machine.

This was the scary part.  I kept waiting to see a doctor coming down the hall to ask us to step into a different room.  I kept expecting to hear bad news now.  I was dreading every open door.

Phone rings.

Doc answers.

Rowan is off the heart/lung machine.  No problems.  He did great.  They are closing him up.

A little bit later we stepped into the hall and watched them wheel our pleasantly PINK little man into the ICU.  He looks perfect…just drugged and intubated.

Then the surgeons came to talk to us.

(Here is a picture of Rowan’s heart for those who would like the reference)

Ignore the numbers.  The blue lines show where unoxygenated blood returns to the heart from the body.  Notice it all flows towards that little hole.  That little hole got SUPER tiny.  ALL of Rowan’s blood has to pass through that tiny tiny super duper itty bitty hole.  With that hole being so small, all of the problems (needing oxygen, being super unstable, respiratory distress, SATing all over the place) can be explained.  They widened it. Permanently.  They think the hole tried to close up, which is unusual in heart kids like Rowan.  But it’s fixed now.

We were desperate for Rowan to have a problem that was fixable.  For an explanation for why he needed the oxygen and started having trouble.  This could very well have been just that.

Then they did the Glenn and Rowan looks great!  He’s totally given every doubter the finger  surprised everyone!  He is in the PICU at St. Francis now.  We’ll keep him comfy and start to try to get him off the ventilator and off post-op meds.

No more shots at home now.  Maybe just aspirin.

Probably won’t need the IV.

Hopefully won’t need the oxygen.

Nothing short of incredible.  Maybe some “mighty” rubbed off on Rowan after all.

When I said goodbye to Rowan before surgery, I simply whispered “not today” in his ear. Not today. Not today.

Definitely not today.

Meeting With The Surgeons

Our meeting with the surgeons was today.  In Tulsa, there are two surgeons who do the CT cases together.  We were hoping for a wonderful “we feel confident that he will do well” because that’s what any parent would want.

Instead, we got what is far more realistic…and far more appropriate for Rowan.

Cystic Fibrosis sucks.  With a normal hypoplastic heart repair, this surgery is pretty straight forward.  But they want the kiddos to have perfect lungs.  CF kids don’t have that. 

The major risk and problem with the Glenn procedure is building fluid in the chest.  Those of you who have been following our story know that we have been there, done that, and it was a major complication from his first surgery.  That CANNOT happen this time, because if it does, there is no way for him to get fixed…because he’s already had that surgery…and you can’t do it again.

So #1 – less than perfect lungs

#2 – history of trouble with fluid…

= not a lot of hopeful and inspiring insight from the surgeons.

The good news is that we should know pretty quickly if his body tolerated the Glenn…like…during the operation they will find out.  He will go on the heart/lung machine during the surgery.  If he can’t get off that…we’re in trouble.

If during the surgery his Glenn fails…we’re in trouble.

If Rowan’s body doesn’t drain fluid from his head well enough as a result of this procedure, he is at high risk for stroke and brain damage…and we’re in trouble.

So where are we?

Rowan will die, and soon, without this surgery.

With this surgery, Rowan may die…but it’s his only hope.  So the surgeons are willing to try.

Sound familiar?

Pretty sure we had the same thing going on about 5 months ago.

How I Effectively Lobbied for My Son

Being a parent with a sick child is hard.  Being a parent with a sick child who continually shows signs of worsening struggle is gut-wrenching.  Being a parent watching the slow deterioration of their child and not yelling at someone out of shear fear and panic – super hard.

We are very happy to report that Rowan’s surgery was moved up to June 7th.  That is 5 days sooner!

I have never been a yeller.  I have, however, always been good at talking.  So that’s what I did.  No one likes to be yelled at, but honesty can go a long way.

When I took Rowan to the Pulmonologist on Monday, I expressed how concerned I was to him about Rowan.  We discussed the fact that Rowan occasionally drops into the 50s (which he was doing during the office visit) and how Rowan is struggling a little more each day.  The Pulmonologist shared my concern that Rowan needed his surgery sooner than it was currently planned.  I told him I had expressed my concern, but the surgeons wanted him to have a month of space from his last acute incident.  The Pulmonologist not only listened sympathetically, but offered to call the surgical team and tell them that he did not believe that Rowan truly had an acute incident and that he believes Rowan needs his surgery sooner. – So I lobbied for my son by communicating with Rowan’s health care team and asking them to share their opinions.  The pulmonologist had been seeing Rowan when he had this suspected acute incident in the hospital, so he would be the expert on that incident.  I believe the surgeons know what they are doing – but they also haven’t been able to see Rowan lately and I want them to have all the information I can provide them with.

Also, I called our cardiologist’s nurse repeatedly last week.  As Rowan continued to decline, I wanted to make sure that it was being documented – and I wanted to make sure I didn’t let him hit a breaking point without managing it appropriately.  One of the reasons I wanted to make sure that his decline was being documented is to protect him from assumptions.  If there is documentation that he is declining steadily and I take him to the hospital, then I have proof that this wasn’t a sudden occurrence caused by a virus or infection that would delay his surgery. 

I was also extremely honest with the nurse.  I told her that I was really concerned.  I used the term “freaking out” a few times.  I told her that he seems to be a little worse each day and that I was really scared that he was going to crash before surgery and go into an open-heart surgery weaker than he needed to.  We were set up with a cardiology appointment to check on him last Friday and the cardiologist said he would bring Rowan up at the cardiology meeting later that day to see if the surgeons would consider moving it up.

So with a call from the pulmonologist and the input of our cardiologist, and a lucky opening in the schedule, Rowan is getting moved up.  I really feel like this is the best thing for him and I am extremely hopeful that we can make it 5 more days.

As a parent, I’ve tried to keep “my way” and “what is best for Rowan” separate.  I did not get “my way” with this.  It certainly was what I thought was best, but I trust and rely on my son’s team.  I wanted “what is best for Rowan” and to get that, made sure that everyone was understanding his current situation so that they could make the decision with all the information I could provide them.  If they had said “we still feel it is best that we wait to do his surgery” I would have gone with it!  …I may have gone with it with Rowan in the hospital so he can be monitored.

Truth is powerful.  Knowledge is powerful.  I really think that the way I treated this situation shows how much I have really come into my own as a heart mom.  I feel a part of the team completely now.  It’s a good place to be heading into a major operation.