Grateful Parents

Several weeks ago we were invited to speak at the ribbon cutting at UF Health's (aka Shands) new Pediatric Cardiac Intensive Care Unit, part of the Congenital Heart Center.  Ginny's surgeon, Dr. Mark Bleiweis is the Director of the CHC.  Yesterday was the ceremony, and they'll start accepting patients on Monday.

The unit is huge (18,000 SF) with 23 new beds, in a space that was formerly offices and administrative space.  I spoke during the ceremony, while Rachel spoke to a few of the media and Ginny was the ham that she always is and cut the ribbon.  It was a great day.  I'm happy that Dr. Bleiweis now has a bigger space, and the opportunity to help so many more kids.

I had taken time to prepare some remarks, and reviewed them several times in the morning.  They were on my tablet and ready to go.  I left the tablet on the podium several minutes before the ceremony.  Dr. Guzick (Sr. VP of UF for Health Affairs) spoke, then Mr. Goldfarb, (CEO of UF Health), and then Dr. Bleiweis spoke and introduced me.  I hugged him and walked to the podium.  I ran my finger across the tablet and..... "Please input your password".... Crap!  I don't have time for that. Damn you, Bill Gates!  So, despite my preparation, I winged it.  Here is what I wanted to say:

 Thank you Dr. Bleiweis.  My name is Jason Haeseler, and I’m here today with my lovely wife Rachel and our daughter Genevieve. We’d like to thank UF Health and the Congenital Heart Center for inviting us here to participate in such a momentous occasion today.

Rachel and I have lived in Gainesville for over 10 years.  We’re both UF graduates, and we met when we were students in the College of Engineering.  When you’re a student at UF and you’re young and healthy, like we were, and if you’re not associated with the College of Medicine, you don’t really think about this hospital here in your backyard being a big deal.  It’s a big complex, but if you don’t have a reason to come over here, you don’t really think about it.  Honestly, the only time I really thought about it in any larger sense was when I saw TV commercials that played during UF football games.  Frankly, I was a little cynical about them.  “UF & Shands: The Science of Hope.”  It was well-produced and well-placed advertising, and that’s easy to be cynical about. 

That all changed one day in 2010.  Rachel had what her obstetrician called a “textbook pregnancy”, right up until the day of her delivery.  The thought that anything could go wrong didn’t cross our minds.  Genevieve was born at another hospital in Gainesville and immediately we knew something was wrong.  Ginny was sent here to UF when she was maybe two hours old.  It wasn’t long before we were introduced to the folks from the Congenital Heart Center.  It was in that instant, my cynicism was gone.  

Ginny was diagnosed with Transposition of the Great Arteries, which was complicated considerably by pulmonary hypertension.  Dr. Chandran explained what all that meant to one very scared dad.  Over the next month Dr. Fricker and Dr. Bleiweis led a team of dedicated professionals to get Ginny’s pulmonary hypertension resolved and she was ready for surgery. On June 29, 2010, Dr. Bleiweis repaired Ginny’s heart.  We took her home on July 22, 2010 and didn’t look back.  With each passing year, it would be harder and harder to believe that that little firecracker standing right over there was ever sick at all.  When we tell the story of Ginny’s first few months to folks that didn’t know us then, many have a hard time believing it.  Sometimes we even had a hard time believing it. 

One Thursday, just a few short weeks ago, I got a call from Ginny’s daycare saying “she’s not feeling well and has a fever. You need to come pick her up.”  Less than 12 hours later, we were right back here on the 10^th floor, where Ginny spent 10 days on a ventilator after contracting pneumonia and a viral infection.  We were greeted by familiar faces, and got world-class care.  Ginny is now fully recovered, and she went back to preschool just last week.  We had the advantage during this most recent stay of know our way around, and knowing many of the people that work up here.  That advantage enabled us to notice something about the people that work here. Each and every one of them is doing their part to help these very special kids.  We found that to be true from the physicians to the environmental services workers that took out the trash, mopped the floor, and asked us if there was anything they could do to help us, before wishing our little girl their best. 

On the draft program I received for today’s event, this spot was listed simply as “Grateful Parent.” Truer words have never been written.  Indeed we are grateful for what everyone at UF Health and the Congenital Heart Center has done for our family, and for so many families like ours.  Really, grateful doesn’t begin to describe our feelings about UF and the Congenital Heart Center.  If you’ve ever had an experience like ours, you understand how the English language falls short of expressing what these folks mean to us.  The closest I can come is not only grateful, but also indebted.  We are indebted to all the folks that made this day possible – most notably, the physicians, but also the nurses, technicians, pharmacists, and all the other health professionals. We’re also incredibly grateful for the donors, the engineers, architects, construction managers, and tradespeople that have made this place a physical reality.

We’re very excited that we now have a facility here in Gainesville dedicated specifically to children with congenital heart disease.  It is a great thing for our community.  It is a great thing for our family.  Most importantly, it will give Dr. Fricker and Dr. Bleiweis and all of the outstanding professionals here the opportunity to help more families like ours.  Thank you.     

I'm sure the video of the actual speech will make it to Youtube eventually. Here is the UF Health press release. There was a bit of media there including the Gainesville Sun, the Business Report (a monthly paper, so the story might not be out for a while), and both local TV news stations, WJCB  and WGTN.

I've decided that there are two things that we're going to tell everyone we meet that has never been to Gainesville:

1. This place (Gainesville and UF) are awesome, and;
2. We're never leaving.

If you've never been here, you should visit.  It's one of the best places in the country to live.  

All in a Fortnight

I think this will be my last post for a while.  I might bring this thing back to life once in a while, but hopefully not for the same reason.  I guess some random good news once in a while might be a good thing.

Ginny came home from the hospital the Sunday before Thanksgiving.  It was great to be home with both girls. While Rachel was out picking up some prescriptions, we watched Monsters, Inc.  Then we all got some much-needed rest.  I've been reflecting on those two weeks, and it's a bit head-spinning how quickly everything happened.  

   

This was Ginny and me on Sunday, the 10th.  We went to the new Waffle House for breakfast.  (What can I say, we're rednecks...  We did wear shoes, though.)  Ginny was starting to get a little cough, but hey, kids in daycare pass around germs all the time.  

By Thursday afternoon, we were at the Emergency Department at Shands Children's Hospital. 

It took only a few hours before it progressed to this: 

This was the wee hours of the morning on Friday, the 15th.  Watching your three year old get an endotracheal tube is not fun.  Most of the time they won't let you watch, and for good reason.  Sometimes you don't give them a choice.

The number of people that helped Ginny get better can never be measured.  Thanks to them, Ginny progressed to this: 

And eventually to this:

 Until finally, we took her home, and we watched Monsters with her sister...

We're keeping both girls out of daycare until after the New Year, just to keep the germs away until Ginny is fully recovered.  The folks at GRU and the City of Gainesville created a leave bank, and so many people have donated their own vacation time that Rachel will be able to stay home with the girls until then.  Chalk that up to another reason why we're never moving away from this town.  Thank you all!  Gainesville is home to the best people on the planet.

Now we are here reflecting on the whole experience while we try to remember what "normal" is.  Normal will come back pretty quickly, I think.  As far as my reflections, I think some of them are important to share. 

1. A lot of people have given us great words of encouragement throughout all of Ginny's health "adventures".  One sentiment that we hear pretty often is that we're tougher or stronger than most parents.  "I don't know how you guys stay so strong," someone once said, along with "I don't think we could handle going through something like that. How do you do it?"  Well, the short answers are that we're not any stronger than you are.   How do we do it? Hell if I know.  We weren't really given a choice.  If you were put in the same situation, you'd do it, too.  When your kids need you, you'll find a way.
2. Speaking of what your kid needs...  I've seen a lot of other families with really sick kids, and I have noticed that there is something different about us.  Other families (none that we know well, but when you're in close quarters in the hospital, sometimes you see and hear things) that often parents question "Why?"  I wrote about this a few years ago, when one of Ginny's neighbors in the NICU passed away on Father's Day.  It's a harsh reality that no parent should have to face, but "Why" is not the way to handle it.  "Why" only leads you to feel sorry for your kid.  It leads you to feeling sorry for yourself.  Your kid doesn't need pity.  She doesn't need parents that feel sorry for themselves. She's in a fight, and she needs a battle buddy.  Stop feeling sorry for yourself, pick up your head,  and march towards the sound of the guns. 
3. When the world around you is going to hell in a hand-basket, stay calm.  Those that you love will need a steady hand.
4. Maintain your sense of humor.  I once heard Mike Myers say in an interview, "There's nothing so serious that is can't be laughed at."  My three year old daughter is taking a daily dose of Viagra that would turn an 80 year old man into a walking hat rack.  The jokes write themselves, and they don't stop.  Laugh at them.  Laughter is good for you. 

As we're right in the middle of the holiday season, we've got a lot to be thankful for.  I'm especially thankful for my employer, Chen Moore and Associates.  I've known Peter Moore for over 10 years now.  When I told him what was going on, his only response was "family comes first," as I disappeared for two weeks.  I love that guy.  We're thankful that so many wonderful and talented physicians have chosen to make Gainesville home, and for awesome nurses & RT's who deliver the care.  We're thankful for our families, who took care of Lilly while we took care of Ginny.  Most of all, we're just thankful to be home. 

Merry Christmas!

 

Moving Towards the Exit

Today was a big day for Ginny.  You may have seen my Facebook post on how the morning started, but if you missed it, Rachel and I have been sleeping in shifts.  My shift started a little before 4 a.m.  Ginny started whispering to me at about 4:30, and kept talking (quietly) through 7 o'clock nurse's shift change. During rounds we discussed the plan for the next few days, including the plan for discharge.  Yes, I said the "D" word.  She did manage to get a little nap in before too much commotion, but she's still really tired.

All of Ginny's IV medications have been discontinued.  We've switched her to oral methadone and an oral antibiotic. We (me & her nurse Katie) pulled her PICC line this morning.  She still wasn't thrilled about anyone getting near her, especially if they were wearing scrubs.  Slowly she's started to eat, beginning with a Popsicle this morning, and (as a bribe to take her meds) some chocolate ice cream.

In the early afternoon, we got everything straightened out and headed to the 4th Floor (General Pediatrics).  It's nice down here, but we miss all our peeps in the PICU.  Ironically, we feel comfortable up there.  When we got down here, we (me & her nurse Lynsey) pulled one of Ginny's peripheral IV's so there was one less tube sticking out of her.  Now she only has the one left in her foot.  There are a lot of things that we need to do tomorrow, but if we push the issue, I think there is a possibility we could be home tomorrow night.  That being said, I'm pretty sure we will be home Sunday at the latest.
\

Ginny has really perked up and is comfortably watching movies (thankfully, it's Wall-E, instead of The Little Mermaid for the 15th time today).  She still has a pretty hefty cough, but she's moving air and exchanging oxygen for carbon dioxide... pretty important stuff.  In addition to the cardiology follow up, she'll start to see a pulmonologist to make sure her lungs are functioning properly and we don't have any other underlying issues, and most importantly we don't have a repeat of this episode. She is a brave kid.

 

Moving Along

I'd like to be able to write something witty and uplifting tonight, but really all of us are just whipped. Here is a quick rundown on Ginny's condition:  She's breathing 50% oxygen through a nasal cannula.  We removed her arterial line and discontinued all of her IV meds, but she still has the IV's in her hand and foot, as well as the PICC line, but the PICC is coming out in the morning after they draw her labs.  (Lord help them if they have to draw more...)   She's getting the CPT chest pounding every few hours which results in a productive cough.  A few days ago we were worried about her not having a bowel movement. Now they're worried about having to paint the room after we leave... (It's not that bad, but things are moving.)  All good things.

She's on methadone for a few more days to ease her off the other narcotics.  Even though she's only been on them a week, she's having visible withdrawal symptoms like the shakes and restless legs, and sometimes we find her just staring off into space.  She's not spoken but a half dozen words since we extubated her last night, but we have gotten her to smile a few times. She gets deathly afraid of anyone in scrubs, and was actually afraid of Rachel when she put on gloves to change a diaper. Considering how much she's been through, I can't say I blame her. 

The fact that she's not speaking, combined with the fact that she's not taken anything by mouth has me a little concerned, but that is probably just due to having a lot of irritation in her throat from the ET tube.  If she doesn't start eating or drinking by morning, we'll have to give her IV fluids and investigate what the problem is.  I'm sure that will work itself out.  The kid just does things on her own schedule.  

The thought in the back of my head was that we could probably be home by Sunday.  That might be a little ambitious by a day, but it could still come true if Ginny decides to cooperate.  But then, why start now.  

Never Dull

Ginny is a very articulate 3 year old.  Today I was reminded of a conversation we had nearly a year ago, a variant of which lasted a couple weeks.  We had attended a reunion of the 4/23 Infantry Recon Platoon at Ft. Benning, Georgia, which was also the place where I took my Airborne training when I was in the Army. Ginny was very impressed with the aircraft mock-ups and loved to talk about them.  She had asked Rachel about why we jumped out of airplanes.  Rachel's answer was something like "Daddy and his friends would jump out of airplanes to go fight the bad men...."  Something like that.  I didn't hear it, but the conversations that followed went something like this: 

Ginny: Daddy, when I get bigger I want to jump out of airplanes.

Daddy: Ok, Ginny.  When you turn 18, I promise we will jump out of an airplane together.

A few days later...

Ginny: Daddy, when I get bigger I want you to teach me how to fight.

Daddy: Ok, Ginny, when you get bigger I will teach you how to fight.  But more importantly, I will teach you to fight when it's appropriate.

Ginny: Ok Daddy. 

A few days after that...

Ginny: Daddy, when I get bigger I want you to teach me how to fight when it's appropriate.

Daddy: ?

Today I told Ginny that I wouldn't need to teach her how to fight.  She already knows.  Today's plan was to wean Ginny off the nitric oxide (done), to get her breathing mostly on her own with only a little support from the vent (done), and to get her meds adjusted and ready for extubation in the morning (done, sort of).  Extubation was supposed to happen just before shift change at 7 a.m.  

As the stuff in her lungs continues to break up, she starts going into coughing fits.  There were a couple in the morning that we suctioned away the junk without incident.  After lunch, stuff got real.  She went into a coughing fit that required multiple passes of the suction tube.  This was accompanied by wild thrashing and a considerable amount of vomit, sprayed all over my arm.  It also required that I hold her down by her forehead while our awesome nurse Tiffany (only one of the awesome nurses we've had - including Pam and Laci and Tony and Renee) ran the suction tube down her ET tube.  Her face was red as a beet, mouth wide open in a silent scream, and tears running down her face.  It was heartbreaking. 

This happened a second time, shortly before dinner, only this time it was Tiffany, me, and Rachel holding her down while our respiratory therapist, Jesse (a dude about 5'10, 250 pounds with legs hanging out of his arm sockets) ran the suction catheter down her ET tube.  At least this time we were able to catch the contents of her stomach with the other suction tube.  After we got Ginny settled down, I heard Jesse say to Tiffany "Damn.  That kid is strong." Told you...

The third episode happened just about an hour ago with me, Rachel, and Pam handling Ginny while Sarah our RT handled the suction.  The green vomit added a nice touch this time.  My mother watched and then helped us get Ginny cleaned up while she gave us all the stink-eye for putting her through that. Then we gave her methadone and she went to sleep.  Mom's comment: "Parenting isn't for cowards." That's when I realized where Ginny gets all that fight.  Rita Horn.  If you're a member of my family, you know exactly what I mean.  If you're not, I can only say that Rita was my grandmother on my mom's side, and simultaneously the sweetest and the toughest woman on the planet, from 1922 - 1997. 

In all the commotion, it looked like Ginny's ET tube had moved slightly.  She was breathing will through the vent - it was only providing 5 breaths a minute, and 45% oxygen.  Saturations were in the low-mid 90's.  All on track.  So, rather than try to re-tape the tube (which no doubt would include a fresh batch of vomit) only to have it removed in the morning, the docs have decided to discontinue her feeds now and extubate in about two hours, provided she stays stable for those two hours.  It's looking good so far, so maybe by morning I'll get to hear my little girl's voice again.  

AS I finished typing this post, Rachel ran into the Ronald McDonald Family Room to get me.  I went into Ginny's room and we removed her ET tube.  Ginny is off the ventilator and doing great.  She's on oxygen support through the nasal cannula.  Maybe we can get some sleep tonight...  

Well, That was Interesting

Ginny had a good night last night. Starting with evening rounds,  we began reducing the amount of support on the ventilator to eight breaths per minute,  and we reduced the NO from 20 to 10 ppm, with instructions to reduce by two ppm every few hours. By the time morning came around,  she was down to two ppm NO.  The secretions in her lungs were breaking up and coming pretty easy when we used suction.  Her oxygen saturation was sitting nicely in the low 90's. We almost thought we could start preparing for extubation. (We'll have to adjust her meds for 24 hours before we can discontinue her sedation.) And then....

Ginny decided she wanted to make things interesting. At 5 a.m. Ginny got her dose of viagra for her pulmonary hypertension.  (You try explaing to your insurance company why you're giving a man-sized dose of viagra to a 3 year old girl.) At 6 a.m. she got her diuretic.  Before 7:30 she had loaded two diapers (just wet). By 8 o'clock, all of her numbers looked good, except her blood pressure was dropping,  and approaching the dangerous range (like64/38...).  Some quick action by the PICU nurses and ARNP to get her some fluids and adjust her meds, and we were back in the green. Kind of a scary 45 minutes or so.   (Not kind of... it was.)

Rounds went well despite her antics.  We are weaning her sedatives, reducing ventilator support to 6 breaths per minute and getting rid of th nitric oxide altogether. (It's called babycrack for a reason.  She might need a little blow now and then before she kicks it.)  It is likely that we are 24 hours from extubation.  That is, if we can get her to stick to the plan.

The Science of Hope II

Yesterday (well, really Monday.  It's 3:30 in the morning on Wednesday right now.) when Rachel and I were leaving the PICU for a quick dinner in the Ronald McDonald Family Room, we ran into someone very special to us: Dr. David Kays.  I gave him a huge hug.  I love that guy for a lot of reasons - too many to list - but really they can be summed up in one photo. 

To really understand the meaning of this blurry photo, taken on Rachel's phone in a restaurant parking lot, you've got to do some background reading.  Go back to the first post on this blog, "First Few Days." I'll wait.... 

In the first days of her life Ginny was very, very sick. Just to keep things interesting, she gave lots of people the opportunity to save her life.  They all came through - big time. That first night it was Dr. Kays' turn. We thought Ginny was going to need ECMO, and when it comes to ECMO, Dr. Kays is the dude. ECMO is a very risky treatment, and he was able to avoid that using a combination of nitric oxide and an oscillating ventilator. He's one of our heroes.  That leads us to the second bit of reading.  Again, I'll wait... 

Pretty impressive, isn't it?  He's saved a lot of babies, and babies are awesome.  

Since the title of this entry is obviously a sequel, you probably went back and read the original "The Science of Hope."  If not, I'll give you a second... 

Yes, you guessed correctly.  That cute kid in the LSU shirt (gag) standing next to Ginny is Joseph. (He's the only boy allowed to stand that close to her - and really only for cute pictures and under close supervision.) Our stay in the hospital has given us some life-long friends.  Joseph will probably rebel against his family and be a Gator when the time comes.  

So by now I'm sure you know why we love Dr. Kays so.  Here's the thing, though: he's not alone.  At UF, he's only one of the world-class physicians that you can run into while roaming the hall.  There are others.  A lot of others.  Dr. Mark Bleiweis, Dr. Jay Fricker... Google these guys.  They're rock stars. They save babies, every day. And they're here in Gainesville.  It makes me proud to be a UF alum, and it makes me happy that I live in Gainesville.  (Don't just skim past that.  I said "world-class".  I mean it. You can count on your hands the number of places on this planet where you can get this kind of care.) 

A lot of you reading this have reached out and offered your help.  Many have brought us meals, or coffee, or run errands for us. We really appreciate it. We're lucky.  We've got awesome jobs - Rachel for GRU and me for Chen Moore - with good health insurance, and we've got a great support network. Not everyone up here has that. Ginny's pretty sick, and this is pretty scary, but there are kids a lot sicker than she is.  Two weeks from now, when Genevieve the Destroyer has returned home to terrorize her little sister and all is back to normal, we'll be looking for ways to help some of the other very sick kids that are here.  We hope you will be willing to join us.