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!"