Going Home Moments

Becky Ortyl is my hero. You may remember me mentioning her son Oakes, who is one strong little kiddo that just celebrated his first birthday at St. Louis Children’s.  Becky takes beautiful pictures.  She took the pictures of my husband and I when Rowan was extubated.

I asked her to come take pictures of us when we left the hospital.  I went through them tonight and was just brought to tears.  That was one of the best days of my life.  I wanted to share them with you.

Becky’s beautiful daughter Isla is featured in many of these pictures as well.

THANK YOU SO MUCH BECKY!

Tell Oakes that Rowan says he is next.  You better be on your way out when we’re on our way in.

Rowan Goes Home

“Treat Him as Normal as You Can”

Yesterday Rowan and I went to the Cardiologist while my mom took Evelyn out to see baby chicks, turkeys, and ducks at Atwoods.  The cardiologist visit went well.  Rowan’s heart looked good as did his EKG.  They decided to leave his meds as they are and we will see them again in two weeks.  My big question was “can I take him places now?” Happily, I can report that Dr. Kimberling’s words were “Oh yeah.  I’d treat him as normal as you can.  Just don’t take him around anyone you know is sick.”

Yes sir.

Today, Doc’s parents came by to spend a little bit of time with Rowan and Evelyn.

Rowan was pretty sleepy today.  He’s been almost constantly weaning his sedation medications and that makes him pretty restless, so now that he’s feeling a bit better, he can finally sleep.

 

 

My neighbor, Travis, ended up with something special in his garage that he gave me for Evelyn today, so while Rowan slept and Doc’s parents left to eat at Applebee’s (my father-in-law’s favorite) Travis carried the pieces to our backyard.

My mom game over with a rubber mallet (because OF COURSE they own one) and helped assemble.

 

With Rowan sleeping so much, Evelyn and I got to sit outside and play with A.C.E. for a while.

 

Then Doc’s parents went with us to the park!  Our first “normal” outing with Rowan.  A busy day for our little family.

 

 

 

 

 

Today was Doc’s last day of work in the ICU and he’ll be working fewer hours next month.  I’m excited to be able to go do things with the four of us. 

Thank you to all the ladies at JWI who brought meals for us this week.  You ladies make some fancy salads and some amazing food.  We’ve been eating well and healthily!  It’s also wonderful to see your faces.

Together

Last night, I slept.  My husband handled Rowan the whole night and I slept.  It gave me the edge I needed to adjust my attitude.  Needless to say, I approached today with renewed energy and strength!

Evelyn now makes Rowan’s formula (with supervision) and cleans out his medicine syringes.  She fetches diapers and plays with Rowan when he cries. 

She really likes his new playmat (thanks Mom!) and likes to shake it for him.

 

Evelyn goes to play outside with her bubbles and soccer ball while Rowan and I work on his therapy.  It looks like he’s enjoying tummy time right?

 

 

WRONG! Still not his favorite.

 

 

When Rowan sleeps, Evelyn and I spend time together outside!  I hook Rowan up to his monitor and leave the windows open so I can hear.

 

 

Today we’ve started a project of removing all the “decorative” rocks from our yard.  My parents want them for a water feature in their backyard and I want them gone so I can put down grass and put a jungle gym in the background.  So we worked really hard putting rocks into buckets.  …Did I say we?

I guess bubbles are more fun than yard work.  But I can’t really complain, because when Rowan cries…

..his sister is happy to lend a hand.

Home for Over a Week

Taking care of Rowan has been very difficult.  He’s actually less work than I thought he’d be, but the responsibility of taking care of your child when they are so sick 24/7 is extremely draining.  Add a two year old who just wants you to play with her and there are a lot of moments where I find myself counting to ten.  The hardest thing is not being able to leave the house.  I haven’t left my house since Rowan’s doctor’s appointment last week.  Hopefully, with some new smaller oxygen tanks for travel and Rowan being able to be off the feeding pump some, we will be able to start leaving at least to go to the park or SOMEWHERE soon.

It’s been wonderful that the weather has allowed me to open all our windows so at least our house doesn’t feel quite so stuffy.

To those of you who have brought dinners, thank you again!  Just seeing someone over the age of two for a few minutes a day is great.  The food has all been spectacular as well.

To any of you who have been thinking “I’d like to go visit, but I don’t want to bother them” – by all means PLEASE bother us.  Having someone else around makes me feel a bit less crazy.  Being here and knowing that something could happen where I’d have to take Rowan to the hospital and manage Evelyn is terrifying.  Just having someone else around calms me down, even if they just share news or watch TV with me.

While I’ve been trying to cope with my full time nursing job, my daughter’s increasing need for my attention, and my husband’s long work hours – Rowan has been doing great!  He’s weaned down meds 3 times since being home, he is getting used to a pacifier being in his mouth and maybe even likes it, and the physical therapist came by yesterday and said he was like a completely different kid from when she saw him 5 days before.

This kid is a fighter.  Anything that has been his to fight – be it recovery or rehabilitation – he has done it. He continues to amaze me.  I know that as long as the battle is something you can fight – Rowan will win.  Waiting the next 19 days to see if it is something he can fight or not…well that’s the real thing that keeps me up at night. I do know that no matter what happens, I am so proud of my son.

Sunday Afternoon

Today we enjoyed a beautiful afternoon!  The weather has been perfect the last few days so we decided to get Rowan out of the house! 

My husband was off work today so he was able to help load Rowan up and it took almost no time at all!  Evelyn entertained him while we moved his oxygen tank and feeding pump.

 

 

We loaded up and headed out the front door and down the driveway.  It was so nice, Evelyn even decided to go walk too and to take her new “Baby Rapunzel” in her stroller.

After a nice relaxing walk, Rowan took a nap.  Then it was WORK OUT time!  Rowan is getting stronger every day.  He can easily go from his sides to his back now and is doing better and better at going from laying on his back and rolling to the side.  He is doing better at head control too.  I’m really hoping we get to see him holding his own head up soon.

Welcome Home Rowan Party

Ok, so first off, I want to say THANK YOU to everyone who came by today.  Have you ever had a day that was so good you cried? That was today for me. 

Second off, I stunk at taking pictures during the party.  I took some before the party started, but was too busy enjoying everyone’s company and showing off my son, who was perfectly pleasant when he wasn’t sad that he is getting less Ativan today than he did yesterday.

We had a nice morning too. Rowan got to meet his paternal grandparents today too.

Here are the photos I managed to take today.

 

 

 

 

 

 

 

 

 

A Day in Rowan's Life

What was Rowan's life like in the hospital? 24/7 monitoring, 2 hour increments of care where nurses would come check on him, weighing every diaper, measuring everything that goes into his feeding tube, groups of doctors talking over him, and one place to lay.

Rowan's Days are very different now.

Rowan moves from a baby swing, to a bed, to a pad on the floor, to laying in someone's arms, to sitting in someone's lap.  He sits in different places in the room throughout the day to encourage him to look around (neck muscle work out!).

Rowan's Days Look Like This:
2AM - meds
6AM - meds, shot, respitory therapy, g-button cleaning
10AM - meds, Mom makes food for the day
sometime between 10-2 - home health visit from nurse, physical therapist, speech therapist, or occupational therapist
2PM - meds, heparin flush and IV care
3PM - work out with Mom time (tummy time, side work, neck work, sitting up practice, tracking practice, range of motion stretching)
4PM - pacifier practice and cuddle time
6PM - meds, shot, respitory therapy
8PM - change feeding tube and bag, bedtime
10PM - meds

With the exception of withdrawl issues or digestive issues (we're adjusting his stool softener dose) he actually sleeps through the night from about 8PM-6AM pretty well.  He doesn't have to wake up to eat since he is fed continuously. 

Evelyn LOVES to help with diaper changes or respitory therapy.  She likes to play with him, hold his hand, give him kisses, and show him her toys.  Infact, I just told her that a gel pillow was Rowan's and she set it on his head like a hat because she didn't want to wake him up.

Rowan's goals for the next month from a therapy standpoint are:
To take a pacifier for an extended period of time (longer than 5 minutes)
To support his own head
To roll from back to front

Party Like You Survived 3 Major Surgeries, 3 Cardiac Caths, 3 Months in the Hospital, and Have to Go Back to the Hospital in a Month

 

We are having a PARTY!!!  I feel like the least we can do is celebrate the amazing accomplishment our son has made in making it home. On Saturday, we will be having a “Come and Go” style party (meaning that guests are welcome to come by at any time during the party window but aren’t expected to stay the entire time).  From 2pm to 5pm, we would love to welcome you – our supporters, teammates, cheerleaders, friends, and family – to come by our home and meet our hero.  Our address is on the CareCalendar.  Please let Doc or I know if you plan on stopping by so we can figure out how big of a cake we need!

We will have hand sanitizer available at the door.  Also, we will have medical masks (adult and child size).  Well children are welcome.  We ask that all adults and children who have had anything resembling a cold or flu symptom in the last 48 hours wear a mask – even if you KNOW it’s just allergies.

Also – due to Rowan’s cystic fibrosis condition, please refrain from smoking or being around second hand smoke before coming.  Even smoke particles on clothing can really mess up his lungs.

Other than that – we cannot wait to see everyone!

Moments at Home

 

 

 

“Rowan has a eyes. Evelyn has a eyes.”

 

 

 

 

Exhausted, holding a baby, with a cup of coffee.  Yep. Motherhood.

 

 

 

 

 

“Evelyn fix Rowan’s chair.  Rowan wants to rock.”

 

 

“I love you Baby Rowan.”

…I think he likes her too.

Ready for Rowan

To get our house ready for Rowan, we set up a few things!

The Entryway Set-up

Hand Sanitizer and Medical Masks for Visitors

 

Rowan’s Drawer

Formula, Gauze, Sterile Water, Q-tips, Alcohol Pads, Medical Tape, etc. all in a drawer.  Evelyn’s has plates, cups, bowls, and silverware.  She respects the boundaries.

 

Rowan has an oxygen tank and feeding pump that follow him around and we keep his meds and needles hidden away and out of reach, but the things Ev can help with are readily accessible! She’s a great big sister.

Half work and half dad make Doc a tired boy

Doc guest post:

Rowan saw our home for the first time a little after 1 AM 3/20/2012. I took off work to fly up so we could bring him home and although it took us an extra two hours and the rain was beating us down for about three of those, we are all home. It took three months to get here and we won't really have any answers until his repeat cath on April 17th, but we are home. He gets medicines every four hours, needs his IV flushed daily, his oxygen tank replaced if it gets low, and we keep his pulse oximeter on him when he is sleeping and we're not right by him. He gets blood thinner shots twice a day and is going to be coming off his drug habit the whole time he is home with us. He will have two nurse visits a week, a cardiology appointment every week, and throw in his hospital follow-up for good measure. Physical Therapy and Speech Therapy are going to evaluate him and see what they can do for him. There is a lot of crap going on for one little baby. What I am trying to get at is this: you can say this is a step forward, but only if you don't really understand what is going on with him.

We go back April 16th for his cath on the 17th and from that we will know whether or not our son is going to reach his first birthday. That is not a dramatization, an exaggeration, or even a gentle stretching of the truth. We can be optimistic about it every once in a while, but there is a pretty decent chance that things will not go the way we want them to go. That gives us about a month of trying to forget about how sick he is, whether his oxygen saturations are dropping, rising, or whatever other craziness could occur that would mean he is having trouble. Failing every minute to forget that we are going to have to bury our son. It might not be before his next birthday, but it will be in our lifetime. You will forgive me for my non-descript "ya, things are ok" answers when you ask how things are going. They're going really terrible, just like they have been for the last few months. A lighter shade of terrible is still worse than neutral by a long shot.

Tonight, we were watching Lady and the Tramp as a family and Evelyn put her pillow down by him on the floor and said "Im gon taka nap with baby ronan" and lay down next to him. What the hell are we going to tell her if he doesn't get to come home the next time...

Elle's Thoughts:
We know how bad this is. My husband and I, we know.  Rowan doesn't.  He has no idea he's sick or different.  Evelyn doesn't quite understand though she knows he is sick and she makes sure I notice if his pulse ox alarms while he's sleeping.  But she knows he gets diaper changes and formula just like lots of babies and that he gets medicines to feel better.  Speaking of feeling better, Rowan seems so much happier here.  He smiles more and is more active.  He loves to watch Evelyn and see what people are doing.  He sleeps better.  There are moments where I look at him and think "How can you be dying?  You look so much better!" Bringing him home is absolutely the right thing for our family. It's hard work, but we have support.  Doc and I, we know how truly tragic our situation is, but we are going to LIVE this month. That does not mean that our hearts aren't breaking, but you can feel joy and sorrow at the same time, and we're pros at it. Things are going terrible. But our son is home with us.  The four of us are together. We're trying to live each day, but don't think that once the kids go to bed we don't break down.  We struggle to stay upbeat and focused on what joy we feel.  Every single thing you do to help us keeps us stronger for a little while longer.  My friend and co-worker Camille brought us dinner tonight.  Just having a familiar face stop by and visit gave me what I needed to power through the evening.  Every one of you matter. Every single comment, like, text, act of kindness - it matters.

Home

8.5 hours of driving

A pit stop in Joplin to replace broken medical supplies…

and we are home.

He’s perfect.

CareCalendar

Sign up if you are interested in helping!

http://carecalendar.org/logon/106722

CALENDAR ID      :   106722
SECURITY CODE :   8524

Up Down Right Left…MAKE UP YOUR MIND!

So yesterday was one of the more trying days of this experience.  I got a phone call that was horrible. Matt got a phone call that was not.  Basically, we were told Rowan couldn’t come home because he was too sick.  Then we were told that he couldn’t come home because he’d be too much work because he needs medication every hour to two hours and that’s too much for us to take care of.
Today…plan is that he is coming home Monday!
So…
He is going to be a ton of work.  I will be taking care of him 24/7 and giving meds every one to two hours until we can make his med schedule more manageable.  That said, we are going to appreciate every OUNCE of help we can get.

Check out the CareCalendar for details!

Fingers crossed, we are going to have him home soon.

Let’s Get the Heck Outta Here

Thursday, March 8th – surgery

Friday, March 9th – extubated, moved out of the ICU into the ICU annex

Saturday, March 10th – moved out of the ICU annex to 7 West, the normal hospital wing

Sunday, March 11th – Don’t I WISH I could put go home!

Rowan is doing so well.  He is going to be back up to full feeds through his brand new G button.  He has no tubes down his throat.  He is pretty happy and coughs a lot less.  He certainly sleeps much better.

Our current understanding is that the following should happen before he goes home:

1.) Full feeds using G-button without issue – almost done.  Will be done by 8pm today.

2.) Switch from IV lasix twice a day to oral lasix 3 times a day.  Possibly remove his Broviac – should be easy to do.

3.) Get off the small amount of oxygen he’s been on post-extubation.  He is on 1/4 of a liter of oxygen. We’ll see if we can sort of slowly turn it down.  It’s debatable whether or not he needs it, but he seems to struggle when he is close to morphine doses, so we’re fine with it helping him stay comfortable.  We also may see if we can just take him home on it. Home is home. Oxygen is such a small thing to worry about.

We’ll hopefully meet with the docs today and get an idea on a timeline. My husband is flying home today so he can go back to work in the Adult ICU tomorrow.  I’m staying until he gets to go home, which we hope is soon.

Nissen G-Tube

Doc guest post:

So today Rowan had a Nissen fundoplication. No, that is not a made up word. It is actually a surgery where a portion of the stomach is wrapped around the opening from the esophagus into the stomach, tightening the opening and preventing stomach contents from refluxing, traveling back up the esophagus and causing all manner of mayhem. So our little man has 5 new holes from that (one at the belly button and four smaller ones along the bottom of his rib cage) and has one other new hole. He had a G-button placed, which is a tube that goes directly into his stomach through the skin. This is how he will be getting his nutrition for a while as he learns to eat like the rest of us. He will no longer need the tubes he had in his nose, as one of them was sucking stuff out of his stomach (which won't have the opportunity to reflux now and will pass into his intestines like it should) and the other was going past the stomach and was how we was getting food before the surgery.

He is pretty uncomfortable for now, but should not be for very long. They did the surgery laparascopically (with smaller incisions and instruments that fit through the smaller incisions, as well as a camera to see what in the heck you're doing), which means shorter recovery, less pain, and less inflammation. All good things.

He is intubated again(he has the breathing tube and is hooked up to the ventilator). The plan for extubation (removing the breathing tube and him breathing for himself) is tomorrow morning. So by the time I get there tomorrow, he will likely just have some oxygen by nasal cannula and by Sunday before I come back he could have nothing in his nose or mouth for the first time in...well, there was a 30-second period between NG tubes about two weeks ago, but really since the first day of his life. Saturday he will be three months old. In that time, he has:

Been intubated
Had a cardiac catheterization
Had his first surgery scheduled, then cancelled
Diagnosed with cystic fibrosis
Flown in an airplane for the first time
Had a Norwood procedure with repair of interrupted aortic arch
Spent Christmas in St. Louis
Been weaned off multiple cardiac meds
Spent New Year's in St. Louis
Been weaned off sedation meds (this process is still ongoing, just much further along)
Had a pleural effusion that kept coming back
Met his sister
Had chest tubes placed, taken out, and new ones placed, then taken out
Been held by mom and dad for the first time since immediately after being born
Had an EEG
Had a mysterious rash
Missed two extubation dates
Been extubated
Had two missed discharge dates
Been intubated for cardiac catheterization
Been extubated
Been intubated for his Nissen G-tube
Been extubated (pending for AM)

And along the way:

Had multiple NG tubes placed
Had multiple NJ tubes placed
Had more than half a dozen echocardiograms (ultrasound of his heart)
Had a hearing test
Had a Foley catheter (goes into the bladder) in for a while and removed
People he hasn't even met ran a 5k for him
Had dye put in one end (mouth), in the other end (bottom), and injected into his heart at various times to take pictures of his anatomy
Had who knows how many IV's, 8 or 9 arterial lines, a PICC line, a Broviac, and a central line

All of that and I am still leaving out a ton of things that have happened in our little guy's life. Third time was the charm for extubation, here's to hoping that his third discharge date will stick as well.

Whenever we get there again, that is.

Quick Update

Rowan will be having a repeat cath in about a month.

Thursday they are putting in a semi-permanent feeding tube called a G-button so Rowan can get tube feeds without having something shoved down his throat all the time.  He will also have a procedure done to prevent reflux so he isn’t at risk for aspirating. 

The doctors are optimistic that the drugs are working for Rowan.  They have said that his x-rays show more pulmonary vasculature (lung blood vessels) which is a good sign that they’ve opened up.  One of the CT surgeons thinks Rowan may have had a mild respitory infection at the time of his cath which made his pressures higher at that given point.  We’re hoping that they’re right.

Meanwhile, my husband is working ICU this month, so 12+ hour shifts, 3 call nights, 2.5 weekends.  It’s hard to go from being together so we can help support each other through all the ups and downs with our son’s life to seeing each other for maybe 1 hour a day.

I will be going back up to STL for Rowan’s surgery.  We will see when I come home depending on the outcome.  My husband will be here with our daughter.

Waiting a month to find out if your son has a chance to live or not sucks.

We Hate Being Smart Sometimes

because it means you understand too well how bad your situation is.

During Rowan’s cath, they measured pressures in different blood vessels and mapped out how his heart repair was functioning.  We were hoping that they would find out that his shunt was having trouble and they could repair it quickly and he’d be good to go.  His shunt was fine.  His heart was fine.  His lungs were not.

The blood vessels in Rowan’s lungs had pressures that were higher than they should be.  This is likely the reason his oxygen saturation was low.  Instead of going to the lungs to get oxygen, the high pressure in the lungs discourages blood flow and so Rowan’s blood was preferentially going back out to the rest of the body instead of recirculating to the lungs.  This means that his second surgery will very likely fail.

There are medications that open up the blood vessels in the lungs to lower the pressure.  That is what we are doing now to try to get Rowan’s blood flow rebalanced.  There is a chance that this medicine can get him to the point where he can have his second surgery.

BUT – here is the bad news.  There was one vein in his lungs that had higher pressure than the rest of his veins.  This could be just an isolated thing, but it could also be the start of degenerative lung condition – and there is not a way to fix that.  So even if the medications work now, eventually his lungs will be destroyed, and he will die.

We were given a few options:

1 – Try to lower his pressure and get him to the Glen and continue down the road we started on, hoping that his lungs are not degenerating.  If they are degenerating, forgo the Glen and bring him home for whatever time he has left.

2 – Put a bigger shunt in to by him time. That is all it would do.  It may buy him a few months, but he would eventually die and there is not a guarantee that he’d spend very much of this time outside of the hospital.

3 – Heart/Lung transplant.  He’d have to live long enough to receive the transplant IF he qualified as a candidate and the survival rate is extremely low.  He’d never be a teenager.  It wouldn’t last his whole life, just a few years, and much of that time would be in the hospital.  We would also have to leave him in the hospital until transplant – in St. Louis.

We’ve decided to pursue option 1.  We have put Rowan through so much already. Our goal is to put him on the path to a long and happy life with us at home.  If that path isn’t an option for him, then we want to bring him home with us for whatever time he has left.

So he is on a medication to lower the pressure in his lungs.  Our CT surgeon has a theory that Rowan may have aspirated (inhaled) food when he has thrown up since he started being fed into his stomach and shortly after is when he got worse.  We put Rowan back on an NJ for feeds and are trying this medication out.  In about a month, he will go back to cath lab, and we will see if his pressures are better, and see if there are signs of a progressive lung disease.  The surgeon told us that we needed to take a break.  So Rowan is in St. Louis getting the very best care, and we are at home with our daughter, trying to be “normal” for a few days.

When I talked to the nurse this morning, it sounds like Rowan is doing pretty well.  He was intubated for cath and is likely to be extubated soon.  His saturation levels have been moving around a little, which is hopefully a sign that the medication is affecting him.

For now, we’re trying to enjoy some time with our daughter.  We’re playing it by ear right now.  We’ll figure out when we’re going back up later.