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.  

Slow Progress

5:30 ap.m. Rachel took the shift from about 11 to 4:30, since I had been up since about 2 a.m.  Ginny is so active, despite the sedation,  that someone really has to stay on top of her or she'll get a hold of something somehow. When a new nurse or RT comes on, they always say the same thing, "Oh, she's so cute."  Don't let that fool you.   You might see a cute three year old in a hospital bed, but you let your guard down and you might just find yourself in a steel cage match when you least expect it.

She's been making some progress overnight,  but its been slow. Her oxygen is now hovering around 90 to 91, but that is still on 50% support through the vent, and still 20 ppm on the NO.  They have reduced the vent settings to allow her to breathe more on her own, which she's doing a good job of. We've also added a therapy called CPT to break up the junk in her lungs.  When she was in the NICU it consisted of wacking the crap out of her with what looked and sounded like a rubber mallet.  Now that she's bigger, weve gone industrial strength. Instead of a rubber mallet,  we use a pneumatic device that sounds like a weed wacker and works like a vibratory pavement breaker . It's really good at loosening the junk in her lungs so we can suction it out.  She likes the hammer, she HATES the suction.

8:47 a.m. POOP! Yay, POOP!  Ginny hadn't had one since Wednesday some time.  With all the stress and drugs and everything, it would be normal to be constipated, but we were starting to get worried. This morning she gave up a little stone turd.  It's the little things....  9:25 a.m. Does anyone think it's ironic that today also happens to be World Toilet Day?

Water for People

12:00 p.m.  Rounds were finished a few minutes ago.  Good news. We're going to reduce Ginny's vent setting to 10 breaths per minute to get her to breathe mostly on her own, reducing the nitric from 20 ppm to 10 ppm. It looks like we might not hit our 48 hour goal from yesterday, but we may be able to extubate 48 hours from now. I hope its at night when David is on so he can see her better. 

Ah, Monday...

9:00 a.m.  Rachel and I both slept here in the room in shifts with Ginny last night.  She's been very active, despite what would normally be considered heavy sedation. (My kid's not normal. I've accepted that. Superhuman might be a stretch, but...) She appears to be sleeping much of the time, but when she wakes, she tries to sit up in bed, which is a problem given the breathing tube down her throat and the fact that her hands are restrained. We don't need another self-extubation to set her back, so we kept a close watch.

Ginny is steady.  I'm hesitant to say better, but maybe a little.  Her oxygen saturation is holding at 86% (ish), but on only 50% oxygen support (though still 20 ppm of Nitric Oxide).  The bubble test came back negative (good - and it was pretty cool to watch), and she had her echo.  No news from cardiology, so that probably means no issues on the echo (as we expected).  She's given up a lot of junk from her lungs every time we suction.  The PICC didn't get done yesterday, so the PICC nurse & crew are on their way now.  It's a sterile procedure so we'll have to leave the room.  It gives us a chance to get cleaned up a little and take a walk.  Rounds should begin shortly, but we're at the tail end of the unit, so it might take a little while.  There were a few admissions yesterday and it's getting a little more crowded up here.

12:10  The PICU team just completed rounds.  Ginny is making some progress, but slowly.  Her cultures came back positive for streptococcus pneumonia, which we expected.  We made some adjustments to her antibiotics to treat it more efficiently.  Right now our expectation is that she will be on the ventilator for at least another 48 hours, and then maybe she can move down to the 4th floor.  Her PICC went in without complications, so we won't have to worry about sticking her with a bunch more IV's.

Digging In

We had a lot less drama last night in the PICU.  Ginny tried to stir a few times during the night, but her nurse Pam was on top of it.  I managed to sleep through most of it, thankfully.  She's tried to get up out of bed at least twice this morning, despite the heavy doses of sedatives.  It took three of us to hold her still while we suctioned the junk from her lungs.  She's such a strong kid.

The doctors have finished their rounds for this morning.  On the agenda for today is an echocardiogram to check on her right heart pressures, and a bubble test to see if there is any communication between her left and right atria, and a PICC (peripherally inserted central catheter) line. When we got here on Thursday we had hoped that we could be out of here by Sunday or Monday.  Her condition got worse than we expected, but we thought she could turn the corner quickly once we started the antibiotics. Nonetheless, I think the PICC line just bought us 5 more days or so.  Maybe not all here in the PICU, but still...

Her condition is generally the same.  Her oxygen saturation is hovering in the mid eighties on 55% oxygen through the vent, and 20 ppm of the baby crack (NO).  Lots and lots of junk in her lungs, which we have to suction out every few hours.  She hates that, and I don't blame her, but the RSV creates a lot of secretions in her lungs that have to get out for her to get better.  

Lots of you have reached out and offered your help and we truly appreciate it.  Right now, I think we've got things covered, but in the coming days we might need to lean on you a little. Today we're going to bring Lilly up to visit for a couple minutes, but only from a distance.  Lilly loves her big sister a lot, and I'm sure she's missing her.  We miss Lilly too.  

Saturday Evening Update

Today we've learned a little bit more about Ginny.  She is one tough kid.  We've got her maxed out on sedatives (Versed, Fentanyl, Precedex), but she still keeps waking up, trying to sit up in bed, roll over... that kind of thing.  She does try to lift her arms, but we've got her restrained now to avoid any repeat of last night.  Though we'll still need to keep a close eye on her.

There haven't been many changes in her condition.  She's at 88% oxygen saturation, taking 65% oxygen through the ventalator, in addition to the 20 ppm of nitric oxide.  She's on 3 antibiotics, but we'll probably stop one of those tomorrow, since we're pretty confident the infection is viral, not bacterial. And she's getting some food through her dopoff tube.   

I spent most of the day with Ginny by myself, since Rachel was running a fever this morning.  She's also on antibiotics, in addition to Lilly - who has an ear infection and some kind of viral thing also, but not nearly as serious.  My mom is now here from Connecticut to help out a bit, too.  Thanks so much to Rachel's co-workers at GRU for bringing over lunch.  

I will probably spend the night here with Ginny again tonight.  We're going to have some father - daughter football time and hope the Gators can pull off some kind of miracle.   Hopefully we'll have a boring but productive night of recovery.  

Wake Up, Daddy!

Have you ever been awoken in the middle of the night by an alarm?  Not your alarm clock, but, like, the smoke detector, or fire alarm, or burglar alarm?  The kind of alarm that makes you go from a dead sleep to standing and taking action in less than two seconds?  If you have, you know how my night was.

Yesterday was a boring day.  Rachel and I sat in the room and watched Ginny sleep all day.  She didn't really make any progress, but we had expected her to get worse, so no progress was actually pretty good.  The plan for tonight was for Rachel to go sleep at her parent's house and I would stay here with Ginny.  Around 8 or 9, when Rachel was starting to get ready to leave, Ginny started waking and trying to sit up.  We'd been trying to keep her sedation at a Goldilocks kind of status (not to little, not too much, but just right - that's not as easy as it sounds, because every person reacts differently to different levels of medications). She's on three different sedatives at different doses, and we had tweaked the cocktail so that by 9:30 we thought we had it.  Rachel went home at 10, and I laid on the a somewhat comfortable fold-out chair, and was asleep by 10:30.

Shortly after midnight is when it hit the fan. I was awoken by the crash alarm and the voice of David, Ginny's respiratory therapist notifying all the staff in the unit that Ginny had pulled her breathing tube on her own.  (Keep in mind, I'm sleeping about three feet from her bed). Within a second I was on my feet trying to help David keep her still and bag her with oxygen so that her sats didn't drop too low.  It may have been three more seconds before her nurse was in the room, followed quickly by the rest of the PICU team.  I stood back and watched as they worked within a few minutes they were able to get her re-intubated. It appears that by using her tongue and thrashing her head, she worked her tube out to the point that it was no longer doing what it is supposed to.  I called Rachel as the team was coming in the room, and they were done by the time she got here.  It was all pretty scary. But she wasn't done there....

After about an hour of hanging out, and after the x-ray confirmed her tube was in place, Rachel went to the Ronald McDonald Room to sleep in a slightly more comfortable chair, and I stayed here in the room with "Genevieve the Destroyer".  To make matters worse, Rachel is not feeling well, either.  She probably also has RSV, though it won't be nearly as devastating because  of Rachel's advanced age, and she isn't immuno-deficient in any way.  (Yes, that's an old joke.  That's what you get for putting "40" on every one of my birthday cakes since I turned 36...)

I got a little bit more sleep before Ginny's next attention grab.  About 3 am, I was awoken by David again, with Pam and another respiratory therapist working on Ginny.  Her sats were down to the low 80's but she had bit down on her tube and was trying again to work it out.  This time it didn't take long to get her calmed down again and "sleeping" pretty comfortably.  I got a few more hours of sleep, and now I'm waiting for rounds to hear about today's treatment course.

I've heard from quite a few professionals up here in the PICU that they haven't seen a fighter quite like Ginny before.  She's on a lot of sedative and still manages to  open her eyes and try to fight against anything she doesn't like.  Several folks have commented on her physical strength.  She is one tough little girl.  My conversation with David went something like this: "Where's she get that from?  Which one of you is the stubborn ornery one?" he asked me.  "That's the problem.  It's both of us..." I said.  "Good luck with that when she's a teenager."  Yeah, I know....

Right now she's pretty sedated, but occasionally opens her eyes and tries to sit up and raise her arms.  She's restrained so she can't pull her tubes out anymore (at least not with her hands).  She's on the ventilator with 65% oxygen, and getting inhaled nitric oxide at 20 ppm (I probably have a blog entry from a couple years ago about the "baby crack" effects of nitric...), she's on 3 sedative drips and 3 antibiotic drips, in addition to her IV fluids.  She's got a tube in each nostril - a nasal gastric tube to put things in her stomach, like her oral sildenafil meds, and a dopoff tube that goes past her stomach to the top of her guts for some nourishment and to keep things moving.  It's not a pretty scene, so I won't be putting any pictures up for a while.  I will add this one of her in the ER on Thursday, just to keep it a little cute.

Rachel is going to the clinic today to make sure she doesn't have the flu before she comes back in the room, so it's Daddy & Ginny for most of today.  I'll keep everyone posted on her progress as the day goes on.  Thanks to everyone for their love and support.

This Sucks, Part Deux

Well, I guess it's time to fire this thing up again.

Yesterday at  a little before 10 I got a call from Ginny's daycare. She had a fever and would have to go home.   When I picked her up she certainly wasn't herself.   I called her pediatrician and got the next available appointment at 11:30.  Ginny's had a cough and green boogers for a few days and had just finished a course of antibiotics for what we thought was strep. I thought we'd get some more meds and spend the afternoon watching Peter Pan.  Boy was I wrong.

The pediatrician checked her pulse ox as a matter of regular treatment.  She was at 85%.  "I don't like that number," I told the nurse. "Me either," was the reply.  She was given a nebulizer treatment and oxygen,  and checked again. No improvement. Another nebulizer treatment and more oxygen.  No improvement. So.....another ambulance ride for Ginny and Daddy - this time to the new Shands pediatric emergency room.

If you read back in this blog to the very first entry,  you'll see that people don't always yield to ambulances.  Let me be more explicit now: if you drive like an asshole around an ambulance you are endangering the life of someone very special. Don't do it. Also, if I see you, I will follow you. Your day will not end well. I promise.

Ginny was great in the ED. She seemed like she was feeling better, but her oxygen was still pretty low. She was on oxygen and continuous albuterol through a mask (that looked like a fish face).  We were transferred upstairs to the PICU about 6 pm or so.  Upstairs things got a little different.

Even though she was relatively comfortable, she was getting sick of the mask.  She kept taking it off, so we had to give her the nasal cannula. She didn't like that much either, so she ripped it off after 30 minutes. Her oxygen wasn't getting better, so it gave us a chance to try the high-flow nasal cannula. That lasted a little while before she took that out, too. And again, oxygen was still not improving.  We knew that eventually this could lead to intubation,  but there was one more thing to try: the CPAP.

David was our respiratory therapist last night. He's a big dude, bigger than me, and a veteran of two tours in Iraq and one in Afghanistan. He was no match for Ginny. There was no way in hell anybody was going to strap another apparatus to her face. This all happened about 3 o'clock this morning.  We made the tough decision to quit wrestling with her, sedate her and put her on a ventilator.   She really didn't like the IV in her foot, but in retrospect, probably handled it better than Rachel would have.

The intubation went well, but shortly after her sedation started to wear off.  With her breathing tube still in, she sat up in bed and tried to pull that tube out,  tape and all.   We've adjusted her meds and she's resting comfortably.  We've been operating under the assumption that pneumonia is the primary problem. Not all of the labs are back yet, but just a few minutes ago we learned that one of Ginny's problems is respiratory syncytial virus or RSV. You can read more about it here: http://kidshealth.org/parent/infections/lung/rsv.html

Her symptoms are probably going to get worse before they get better.  We expect to be in the PICU until at least Sunday, most likely longer.  There's a great crew up here, many of whom remember Ginny from her last stay on the 10th floor.  They make it a little bit easier, but I wish we were having a reunion under easier circumstances.

Thanks to everyone for their love and support.  We really appreciate it.

Your Parents Are Nerds

I know it has been a while since I posted anything here, and a lot of people have asked me when I'm going to write more. It's all in my head, but this fatherhood gig is hard work. Not to mention my actual job. I've promised myself I would get back to writing, I hope you're still around to read.

As I've mentioned before, both Rachel and I are civil engineers. We both love our chosen profession. So much so that even when we're not at work, we're usually talking about some aspect of engineering or otherwise "dorking out." Part of that is our involvement with the American Society of Civil Engineers. We have both been very active in ASCE since we were students. Rachel is an advisor for the University of Florida students, and I hold a seat on the Region 5 Board of Governors (Region 5 is Florida, Georgia, Alabama, Mississippi, and Louisiana - we probably need to come up with a better name).

So last weekend was ASCE's 140th Annual Meeting. It was special to us for a few reasons. First and foremost, our dear friend Kathy Caldwell was installed as the President of ASCE (the whole thing!) She is just as proud to be a civil engineer as we are, and she's put a lot of work into getting there. Congratulations, Kathy! Oh, and the meeting was in Las Vegas, too...

Ginny took her first plane ride. It is kind of amazing to me that a 5 month old could be flying around the country. My first plane ride was a month after my 18th birthday and it took me to Fort Leonard Wood, Missouri for Basic Training. Not exactly a vacation - it was all-expense-paid though. Ginny was great on the plane. She slept all the way out and all the way back. She did cry all the way home to Gainesville from the Tampa airport, but that's OK.

If you're civil engineers and you drag your kid all the way across the country to Las Vegas, it is kind of required that you go to a civil engineering landmark. While the Bellagio fountain might qualify if I were some kind of hydraulics nerd (sorry Dr. Thieke), we had to take Ginny to two others.

This is Ginny and me standing on top of the Hoover Dam. Behind us is the Mike O'Callaghan - Pat Tillman Memorial Bridge. It had opened just a couple days before we got there. The dam on the other hand, just celebrated it's 75th Anniversary this week. Hopefully, we'll go back for the 75th Anniversary of the bridge... or at least Ginny will.

This is Rachel and Ginny on top of the Mike O'Callaghan - Pat Tillman Memorial Bridge. That is the Hoover Dam in the background. If Ginny doesn't look that impressed, it might be because she was a little freaked out being 900 feet above the Colorado River on a windy day. She only weighs 17 pounds. (I wouldn't let Rachel take her out of the stroller for the picture. OK, maybe I was the one a little freaked out. Can you believe I used to jump out of planes?)

You're probably also wondering about Ginny's health. She's doing great! At her last Cardiology appointment, they wondered if there was ever anything wrong with her. She is gaining weight, getting taller, and hitting all of her development milestones.

Since we came home from the hospital, Ginny has met a lot of people, and helped some of them along the way. Our next chance to help is coming up on the 14th of November. March of Dimes is holding the Gators March for Babies. Ginny has her own marching team, and she hopes that you'll help her by either walking, or making a donation. You can sign up for Team Ginny Lee at: http://www.marchforbabies.org//team/t1502476

We hope to see you there! OK, now a few more gratuitous baby pictures:

Gratuitous Baby Pictures

It's not that I've become lazy over the last week - or even that there hasn't been much to write about. It's just that we're both so damn tired. Yeah, all you parents - especially mine - are laughing right now. Real funny. So, since I haven't had the chance to drop some profundity on you this week, I'm just going to show you baby pictures - and really, who doesn't like baby pictures?



I'm now back to work full time, almost as if I never left. Just as I had suspected, the atmosphere in "the shoe" had grown eerily pleasant. I put an end to that. The ABG (Angry Bitter Guy) is back! If you haven't had an encounter with the ABG, don't think of him as disgruntled. Think of him as colorfully contrarian. Still lots of profundity, just with a lot more profanity. Although, no matter how tough the day is, I'm still perfectly happy to come home and make an ass out of myself just to get a few little smiles and giggles from the kiddo.


Last Friday Ginny went to the pediatrician, Dr. Wyatt at NFRMC. She had gained 9 oz in one week. We stopped fortifying her milk immediately. She's put on more weight this week, but we won't know for sure how much until Friday's weigh-in.

"You can't possibly be hungry again!"

Unsolicited Advice

Well, today's open house at the Ronald McDonald House of Gainesville was a definite success. Today we raised $2,225 for Ginny's Room. That brings the total amount raised so far to $4,690. Thank you to all who donated. Your generosity will go a long way to bring a little comfort to a families with sick children. If you haven't had a chance to give yet, please visit the newly designed Ronald McDonald House website at www.rmhcncf.org to make your donation today.

In a few other earlier posts, I mentioned my friend Matt Z. He and is wife Jenny came up and helped us a lot in the week right after Ginny was born. Jenny is a nervous cleaner, and thankfully she got nervous at our house and helped Wendy do a great job of cleaning for us. Honestly, they did a much better job than we would have done.

While Jenny and Wendy were inside cleaning, Matt and Doug were outside doing yard work. They also did a much better job than I would have. After they were done with the work they came to the hospital for a short visit. "When you get home, I've got a surprise for you," Matt said. Those words usually send a shiver down my spine. Matt and I rarely see each other without consuming substances known to impair our ability to operate machinery. In fact we are often too impaired to operate the remote control for the DVD player and end up watching Borat four times in a row.

When Rachel and I finally pulled in the driveway that night at about 11:00, we immediately saw the surprise. In addition to raking the entire yard, Matt and Doug had rented a pressure washer and washed the house, walkway, porch, and driveway. Well, almost the entire driveway. When the headlights hit end of the driveway, we saw a 3 foot square of black with a giant letter "Z" in it. "That sumbitch painted my driveway," I grumbled. When I got out of the car I realized that he had pressure washed the entire driveway, but left a square with a clean Z.

"Once I got done with the "Z", I realized I should have done an H," he said when we got inside. "Oh well, an artist has to sign his work, I guess." I laughed, and I liked it so much I left it. Now I use it as a landmark to give directions to the house. It's probably good he didn't do the H anyway. The Shands helicopter might have tried to land in the driveway.

This weekend Jenny and Matt came up to visit. Great news: Jenny is pregnant! Apparently our experience over the last two months has not scared them out of having babies. After congratulating them, Matt and I sat down for an adult beverage. I promised him I wouldn't give him any unsolicited advice on getting through pregnancy and childbirth - the man's perspective. I got plenty of unsolicited advice, and - quite frankly - it can get obnoxious and annoying. If he wanted advice, I told him he would have to ask.

Then I got to thinking about all the great kernels of wisdom I have gained over the last eleven months. They are just too good not to share. Here are a few of them, just for you Matt:

First, no matter how strong the urge over the next nine months - and the urge will be strong - you must never utter the question "What the hell are you crying about?" You should never do this because: A) That question will not stop the crying, and; B) The answer will probably be "I don't know." Just give her a hug and quickly go out to the garage and work on something. It will pass.

I know it will be a pain to clean out her cat's litter box, but she just can't do it. There is just too much risk of toxoplasmosis that she could pass on to the baby. Think of it as a trade-off: In exchange for you cleaning up after her cat, she will be your designated driver for nine months. Be careful not to rub it in, though. When you're drunk and she's not, she can do a very good job of making that tumble down the stairs look like an accident. You don't want to go to work with rug burn on your forehead. Again.

Boobs! They don't call them fun-bags for nothing. Just be gentle because at times they will be sore. Also, now you can be your own lactation consultant. You were starting to freak Rachel out.

Go to as many doctors appointments with her as you can. She'll appreciate the support and you'll be able to help her remember stuff she forgets. I think I read that pregnancy kills like 83.5% of a woman's brain cells, so she'll need help remembering. This is also a good time to start keeping a list of all the people you watch put their hands in your wife's vagina. (They're checking her cervix. Honest.) If labor and delivery gets a little tough (like ours), this list can get quite extensive. It's a good idea to keep a small notebook and pen handy.

Fat jokes - Really, only I can get away with that kind of stuff. Leave it to the professionals.

Don't let your wife get discouraged if her obstetrician doesn't want to be "friends" on Facebook. She might have a "once I have my hands in your vagina we can't be Facebook friends" policy. It's a good thing you don't have that policy. You'd have a lot less friends.

Don't spend a lot of money on cutesy little nursery decorations with cliche sayings like "Precious" and "Daddy's Little Angel". Instead, make your own. Use classic parental sayings like, "I'll give you something to cry about!", and "Wait until your father gets home!" and my favorite "This is why we don't have nice things!"

Seriously though, congratulations. A year from today, you won't remember what life was like without that kid. I think that's nature's way of numbing the pain.

Happy Anniversary

Tomorrow the Ronald McDonald House of Gainesville will celebrate their 28th anniversary. They will hold an open house from 11am to 1 pm and they will be kicking off Ginny's Room, a new room sponsorship program. You can read more about it in "On Gainesville and Giving" from July 6th.

If this seems a little repetitive, let me explain. I just got a message from a friend that is willing to match - dollar for dollar up to $1000 - for every donation received tomorrow during the open house. So, if you would like to give, please come by the Ronald McDonald House of Gainesville at 1600 SW 14th Street between 11 and 1. If you can't make it but would like to give, please call the House at (352) 374-4404.

And now, another gratuitous baby picture:

She really didn't like that bath as much as I let on...

The New Normal?

I wouldn't exactly call it "clamoring," but several people have asked for a new post and some pictures of Ginny. The picture above was just before we left the hospital on Thursday. The kid can sleep through anything.

Since we got home on Thursday evening, we've been trying to find what our new "normal" is like. On Friday afternoon I went to the office to see if I could still find my way there, and to remind everyone what I looked like. I didn't want anyone to call the cops because an angry bearded man was rummaging through the office down the hall.

Today Ginny had her first pediatric appointment, so I went to work a little late. It was nice to go to a doctor's office and just talk about regular baby stuff - like how much she weighs and and what color her poop should be - and not have to discuss cutting her open to rearrange any more plumbing. We talked about how much she should eat. When we got home on Thursday, Ginny started eating 60 ml every 3 hours. By Friday night, it was more like 90 mL every three hours, and today she is sucking down 120 mL about every two and a half.
When she's done with that she just chews on her hand for a while. It's probably a good thing she doesn't have any teeth or she would be missing a finger. We also talked about how much she should sleep. Luckily Ginny sleeps about 7 hours straight each night, so it's a little easier on Rachel. (Like my daughter, I can sleep through anything.)

So, we're still trying to figure out some sort of routine. I suppose in a few weeks we will know what works for us. We've had a busy time over the last two months, and there isn't really any sign of it slowing down. I think we like it that way.

This Wednesday Ronald McDonald House Charities of North Central Florida will celebrate the 28th anniversary of the Ronald McDonald House of Gainesville. They will hold an open house from 11 am to 1 pm to celebrate and to announce the kick-off of the "Ginny's Room" room sponsorship program. (If you haven't heard about Ginny's Room, check out my post "On Gainesville and Giving" from July 6th.) We hope you can spare a few minutes to stop by and say hello. Unfortunately, Ginny won't be able to make an appearance this year because she hasn't had any of her immunizations and we don't want to risk her getting sick from a crowd - and we hope there will be a crowd. The Ronald McDonald House is at 1600 SW 14th Street in Gainesville. We will see you there.

And now, the gratuitous post-bath photo:

Happy Birthday to Me!

Ginny has been eating like Kobayashi since Tuesday evening. She sucks down at least 60 mL every 3 hours and hasn't spewed once. All great things. So, this morning we took out her stroller and car seat and set it up next to her crib in the hospital. "Are you ready to go home again?" we were asked jokingly during rounds. "Subtlety is not my strong suite," I replied. Just ask the herd of jackasses at parking services.

Within about 45 minutes our stuff was packed, Ginny's monitor was shut off, the leads were taken off, and her IV and PICC were removed. We strapped her in the stroller and we were off.

Since it was Thursday, we decided to stop at the March of Dimes NICU family lunch on our way out. I know I've mentioned it before, but thanks again to Gator Domino's for donating pizza to the March of Dimes every Thursday.

Today's lunch was a special one. On Friday, July 30th at 7:00 pm, the University of Florida football team will host the 3rd Annual Gator Charity Challenge. (You've probably heard of them, Nicole. They're kind of a big deal.) Some of the athletes on the March of Dimes team stopped by to sign some autographs and have lunch with us. They were March of Dimes Team Captain Duke Lemmens (football, #44, DE), Billy Steinman (football, #60, OL), and Claire Spurling (track & field - she's a pole vaulter). Of course they had already heard about Ginny (she's a pretty big deal, too).

If you are in Gainesville - or anywhere in Florida, really - you should come support these great charities. Check it out at: http://www.gatorzone.com/story.php?id=18308. We'll be supporting the March of Dimes team this year.

After lunch we loaded the car and headed home - this time for good, hopefully. When we got home, we fed her, changed her, and put her to bed. Today is my 35th birthday, and I couldn't have asked for a better gift.

Problem Solved

We dropped Ginny off at the OR at 10:00 AM and she was back in her room by 11:20. She has just a couple of tiny incisions to add to her quite impressive collection of scars and she is doing great. She has taken some Pedialyte by mouth and kept it down, so we are back to working on feeding. Her "mechanical" issues with suck/swallow have been fixed and now it is just a matter of keeping it down. We had a visit from Dr. Baines (the other Dr. Baines, that is)and we are reasonably sure we will be home by Friday, if not earlier.

I'm planning on making a couple of appearances at the office over the next couple of days just to remind people of what I look like, and then I hope to be back to work next week. It's been so long, it will probably feel like I'm starting a new job.