Thursday, March 29, 2007

Feverish Scare (All is FIne)

Reading the Sunday New York Times

Charlotte woke up from her nap on Tuesday with a 102.3 degree fever. Yikes. That's the highest fever I can recall her having had, ever. After checking to make sure that none of her wounds looked infected, I immediately stripped her down to her onesie, gave her some Tylenol, settled onto the couch with baby in my lap, and called the Cardiac Recovery unit.

The CV APN on duty was confident that I'd done everything I could and that there was no major problem. To be thorough, however, she had us come in early for our post-op appointment. Charlotte still had a fever when she went to bed, but by Wednesday morning (yesterday), it had broken.

Yesterday (instead of Friday), we went to the hospital to see Julie. I was delightfully surprised that Charlotte did not scream the minute we walked into to the place. Julie thought everything looked good. She ruled out an ear infection, wound infections, and a cold. To be on the safe side, she had us go to the lab for blood tests to rule out any infections that wouldn't be visible to the eye (staph, blood infections, etc.).

No more steri-strips or bandaids.

We learned in the late afternoon that the blood looks good. We're waiting for the culture results to come back today, but we're doubting we'll find anything bad.

Charlotte is still running a little hot, especially at night. But we've been told several times that "valve kids" can run a fever for a week or forever. As long as it is a low-grade fever, it's okay.

As you can see, Charlotte has no idea she had major surgery a week ago. She's quite obsessed, however, with the "boo boo" from the peripheral IV on the back of her right hand. It's pretty cute: "Mommy tish boo boo? Daddy tish boo boo, too?" Ah, toddlermania. Such fun.

Tuesday, March 27, 2007

Recovery Day #4: The Details

First of all, Charlotte was released from the hospital on Sunday, her fourth post-surgery day. Many of you gathered as much from the picture, but just as many were confused. So, yes, she's home.

Here's what the day looked like:

The "flock of docks," Dr. Backer, Dr. Young, and Dr. Wu (cardiology fellow) and Susie came by in the late morning to do rounds. Dr. Backer came into the room grinning from ear to ear and cracking jokes, clearly pleased to see Charlotte's progress (and his fabulous handiwork). They took one look at Charlotte and said, "Go home."

Okay, what they really said was, "Are you comfortable taking her home?" YES!! We can deal better with her feeding her properly at home. And, she's ready. In fact, she's asking "Home?" for the first time since the surgery.

So, they ordered a chest x-ray and said if it came back clear we could leave.

Charlotte and Bubba smiled for a chest x-ray. (She smiled a second after I snapped this, but the lighting was bad.)

Then Charlotte ate lunch and took a long nap. Really long. We toured the available real estate in the area after eating brunch.

Then Charlotte took her first wobbly steps

Susie came and gave us the all clear on the x-ray. She also gave us post-op instructions. Much to Philippe's delight, Charlotte is no longer taking Digoxin. She remains on Pepcid and Zyrtec (for her reflux--no reason for the heart doctors to change that). We've added a daily dose of baby aspirin; research shows that aspirin may prolong the life of the valve.

We have to follow sternal precautions meaning we cannot pick her up under her arms (we have to cradle her or make a chair with our arms) and she cannot lift her arms too high. We have to avoid groups of children for at least 2 weeks. And, the hardest part, we have to avoid situations where she could easily fall for at least 6 weeks--so no playground.

Then we packed up and went home. Charlotte took a walk with Mom & Dad. Then she took a little nap.

Then she settled back into the house as if she'd never left. She even slipped right back into her sleep routine.

This is very good. This is very, very good. (okay, some of you even know the tune to this song, right?!)

Saturday, March 24, 2007

Recovery Day #3: Released from PICU & Wireless

Charlotte has officially been transferred from the PICU to the 5th floor cardiac recovery unit. She's in room 586, bed 1. Her PICU nurse Naomi was sad to see her go. Charlotte was so peppy and playful--she provided a real ray of sunshine in the PICU.

She had her chest tubes removed this morning. I'm sure it was uncomfortable, but she was a real trooper. We've also had the peripheral IV removed from her foot and are hoping she'll have the strength to walk tomorrow.

She's eating gang busters, but reflux reared its ugly head again this afternoon.

On the fifth floor Charlotte gets to eat in a high chair. Actually, Mom thinks she prefers lolling around in bed with milk and cookies.

And she's still running a low-grade fever that seems to have Mom & Dad more worried than anyone else.

Mobile and running for Mayor of the Cardiac Recovery Unit.

On the 5th floor she still has monitors attached to her chest, but she's got a wireless monitor. We got to visit the Child-Life Center this afternoon for Charlotte to play with the train table and color at a table.

Friday, March 23, 2007

Recovery Day #2: Another Day, Another Milestone (or 3)

"Okay, I was cute with the oxygen cannula, but I'm so much cuter without it."

Today, Charlotte's doctors okayed the removal of her oxygen, arterial IV, one peripheral, and all IV medications. She still sports one peripheral IV (on her foot), a venus port (being used only for medications and not IV drip) and three chest tubes.

The removal of the chest tubes was delayed due to her high level of activity (between midnight and two a.m. when she woke up to play. Oy vey.). All the wiggling caused the medistinal tube to drain more blood than had been happening so we're waiting a day to let that settle (which it has).

Charlotte and her celebrity surprise visitor, Uncle Hal! Mom has the best brother in the world.

She's been released to the cardiac recovery, but as of 9 p.m tonight they did not have a bed for her. She's sound asleep so I'm praying that no bed will free up until tomorrow a.m. or that the doctors will have the good sense not to wake her since I don't think they desperately need her PICU bed. I know moving to the floor is a huge milestone. But, it is also a huge drag as the rooms are tiny and shared, the floor is understaffed (though the staff they have is excellent) and it seriously not a good place for rest and healing. The less time we can spend there the better.

What a big girl, holding still for the echocardiogram. Let's get a good picture of that heart!

In fact, the 5th floor has become one of my major motivations for being involved in hospital fundraising. We need a new building.

I'm on Philippe's laptop and grabbed the wrong connector, so I apologize for no pictures. Will do my best to rectify that tomorrow. Suffice it to say, when she's not overtired, Charlotte is all giggles and smiles. Her fortitude is an inspiration.

Thursday, March 22, 2007

Recovery Day #1

In a nutshell: Charlotte "rocks!" as Dr. Jason Kane, the intensivist on service, said this afternoon.

Today the docs have:

  • Removed Charlotte's bladder probe (an uncomfortable catheter thing that takes an internal body temperature near the bladder. Yuck.)

  • Removed her Foley catheter and reinserted her MICKey button

  • Stopped all IV drip meds except for a small dose of Milrinone

  • Pretty much stopped Morphine (because Tylenol works better for Charlotte)

  • Released Charlotte to her home diet

Today Charlotte has:

  • Drunk 360 mls of Pedialyte without coaxing

  • Drunk 100+ mls of Pediasure and tolerated another 80 mls through her g-tube

  • Eaten about 1 teaspoon each of chicken and mashed potatoes and a whole string bean

  • Hammed it up for the camera (I'm in the hospital computer room without my camera or laptop, so pictures to come)

  • Asked to "atch Elmo" (and, yes, Daddy ran home to get the DVD for her!)

  • Said "Bye Bye Jenny" to Julie Creadon

  • Blew kisses to the volunteers who visited

  • Shown her truly bright, vital, funny personality

  • Warmed our hearts

Thanks for your calls, emails, and warm thoughts. More tomorrow.....

Wednesday, March 21, 2007

10:15 p.m.: Charlotte is My Hero

Charlotte has weathered her PICU recovery like a trooper so far. She is on very few drugs: Tylenol for pain and a slight fever, a heart drug I forget, and morphine as needed.

We got in to see her, as Philippe wrote, around 3:15 p.m. She was in and out of it, mostly out, very woozy, but not in too much visible discomfort. Around 4 (I think) the doctors decreased the ventilator enough that Charlotte was "driving" the breathing and the ventilator was assisting her. They took her off the morphine drip to help her wake up a bit and see if she was ready to be extubated.

And, at 8:00 p.m., the tube came out. Charlotte is breathing on her own. She was quite uncomfortable at first, very "cry-cry," reaching for Bubba and our hands. Her little cry was pathetic due to the sore throat that the tube leave behind. Then Hector (her night nurse) asked if she wanted to roll onto her side. She said, "Yeah" with wan enthusiasm. It was music to our ears.

Dr. Deena and Hector decided to give her a dose of morphine to calm her down and Philippe and I took a quick dinner break. A little plug: We dined at The Red Lion on Lincoln, one of Chicago's legendary watering holes. The barkeep/owner Colin was delightful and we had a well needed break.

When we returned, Charlotte was peacefully asleep, Elmo in her arms (she asked Hector for Elmo, G-d bless her!). Philippe sent me home to get a good night sleep. Super dad is spending the night with Sprout.

3:15 PM - Charlotte is in the PICU!

Mom is holding Charlotte's hand, so Dad is filing this post.

Since the last post, Dr. Backer (CV Surgery) and Dr. Prisbello (sp? - Anesthesia) came and talked to us. Both looked relaxed, actually, they both had as large a grin on their faces as you would expect surgeons to grin. In brief, the operation went well, very well.

We're now in the PICU where a beautiful little Charlotte, hooked up to the machinary we have seen before (and a couple of new devices that did not exist 2 years ago... can you imagine?), is starting her (rapid) recovery back to her former self. While heavily sedated, Charlotte has started to wiggle her fingers, wave her hand and open her eyes.

All is as well as can be right now, probably even better. Rumor has it that the breathing tube may come out tonight (Yeay!). Mom will be back on blogging really soon. Dad is settling in for the night...

Thanks for listening, thanks for monitoring... It means the world to us.

12:15 p.m CST

The repair is complete and Charlotte is off of the heart & lung machine. The doctors cleaning up the bleeding and getting ready to close her up. That should take another hour. Then they'll take her (still asleep) to the PICU and get her all wired up there. Another hour. Then we get to see her.

All went as planned. In fact, they had expected to use a homograft for her arterioplasty, assuming that scar tissue from the previous surgery would mean she had no pericardium (her own tissue) to make a patch. But, our miraculous kid had enough of her own tissue. As Julie told us, it won't make a difference in recovery or anything, but it's always nice to use the child's own tissue.

We'll see Dr. Backer in about 30 minutes and then go take a lunch break. Thanks for sharing our vigil with us.

11:15 a.m. CST

As of 10:15 a.m., the surgeons had gotten past all of the scar tissue, had administered Heparin, and were getting ready to connect Charlotte to the heart & lung machine. Once that is successfully done, they'll get working on the two repairs.

She'll receive a porcine (pig) valve and a Dacron conduit as there is no homograft valve-conduit available today in the correct size. The "parts" they put in are bigger than she needs today so that she can grow into them and hopefully give the repair longevity. We've been told that the material of the conduit/valve will not effect its longevity. It's more a matter of how her body reacts with the pieces.

We expect another update around noon.

8:15 a.m. CST

Charlotte is in the OR and we are in the waiting room. As Dr. Prisbello, the anesthesiologist, told us, time is irrelevant. He said that he and Dr. Backer have a singular goal: "to bring her back to us in better condition" than we gave her to them. How long that takes doesn't matter. There's a lot of scar tissue to get through before they can start the surgery.

So...we wait. And we'll keep you posted.

Tuesday, March 20, 2007

Let's Try Again Tomorrow

Well, the cardiac surgeons' first case proved to be more complicated than they had anticipated. Charlotte is upstairs asleep and scheduled as the first CV surgery case for tomorrow.

We arrived at the hospital around 10:15 a.m. Just after 11 a.m., an RN came to do Charlotte's surgical intake (basically review the case history and take her temperature). Then we were taken to a private bed in the surgical waiting area to prep Charlotte (i.e., get her undressed) and talk to the anesthesiologist.

Tick-Tock. Tick- Tock. Noon O'clock.
Charlotte sat on the bed and played with her doctor kit. We read Olivia about 8 times. (It was her first Olivia experience and she loved it!! Of course, we Ian Falconer fans had no doubt she would.)

Tick-Tock. Tick-Tock. One O'clock.
Charlotte colored with crayons and danced to a Wiggles book. Charlotte got into the crib and feigned sleep. Mommy got into the crib, too. (Sorry, no pictures.) We tried to get her to sleep, but she couldn't relax in the hospital environs. And she was hungry as she hadn't eaten since Monday night save for 6 ounces of clear liquid.

Tick-Tock. Tick-Tock. Two O'clock.
Dr. Backer came to see us. He and Susie, the APN, were very apologetic and requested that we return "bright and ugly" at 6 a.m. Charlotte sucked down 4 ounces of apple juice in under 2 minutes and said, "Eating. Eating. Eating? Eating?" So, we took her to the cafeteria where she drank 2 ounces of whole milk and then stole all of her father's chocolate milk.

Tick-Tock. Tick-Tock. Three O'clock.
We took Charlotte home. She said "Home" quite emphatically from the time we got into the car until we walked into the house. Then she let it all go and slept until 5 p.m.
Now, after a hearty dinner, she's upstairs rolling around in her crib not sleep. Can you blame her? Her schedule is all goofed up today. But, she's not complaining.

In fact, she hasn't complained all day. What a trooper!

Monday, March 19, 2007

Pre-Op Report or Charlotte the Courageous

Charlotte was such a trooper during pre-op today. She cried during the blood draw. Mostly, I think she cries because she's being restrained and she's scared. She got over it super quickly. Then she basically held Daddy's hand and ran to the x-ray department.

We waited nearly an hour for the x-ray and Charlotte simply charmed the folks in the waiting area and colored. Oblivious and happy. Then hungry--she drank 3-4 ounces of Pediasure and ate two cookies!!

Check out my bandaid. I'm so brave!

Ooh. This is so cool. What is it?

The lung x-ray looked like it would be a crying disaster. Then I decided to take a picture. She loves having her picture taken (big ham bone, she is). So we told her that the x-ray machine was a camera and she struck a pose worthy of Cindy Crawford. Seriously. The kid is a diva in training.

No, we're not space aliens. We're all garbed up to avoid evil rays. Charlotte wore a lap pad.

Finally, we met with Julie Creadon, one of the CV surgery APNs (Advanced Practice Nurse). She walked us through the plan for tomorrow. Here it is (the short version of our 45 minute conversation):

Hey, Julie! Can you believe I've quintupled in size since from my last surgery! And I like you! Kiss. Kiss.

  • Charlotte is the second case which means we aim to get the hospital around 10 a.m. and they'll take her to operating theater anytime after that. Could be a few hours wait depending on the surgery that precedes hers.

  • They'll administer anesthesia and insert the breathing tube and various IVs. Then they'll open her chest. This is the potentially tricky and long part because it involves going through her original scar. The doctors will dissect and remove as much scar tissue as possible.

  • Next they'll connect her to the heart/lung machine which will do the work of her heart and lungs while the surgeons work

  • Finally the procedures: First, arterioplasty. The doctors will open her right pulmonary artery by making a small incision and attaching a patch.

  • Second, they will replace the conduit and valve that she received during the first surgery

In all, the surgery should take 4 to 6 hours provided there are no complications.

Julie, of course, educated us about all of the risks. I'll spare you the details.

The most important thing is that if you have to be one of the 5-15 in 100,000 children born with Truncus Arteriosus, Type 1A (which is what Charlotte has) is the best iteration to have. She's had no complications since she left the hospital on 6/28/2005. She's thriving. And she's at one of the best hospitals in the country for this surgery.

Sunday, March 18, 2007

Starting Tomorrow--It's Time for the 2nd Repair

Elmo!! (Hey, is that a double chin I spy on Miss Charlotte?!)

The week we've been anticipating with dread since June 2005 (when we brought Charlotte home from the hospital) begins tomorrow.

At 9:00 a.m. we will take Charlotte to Children's Memorial Hospital for her pre-op testing. We'll meet with Julie, our Advanced Practice Nurse extraordinaire, who will walk us through the surgery (again), then Charlotte has blood tests and x-rays to provide basic information in advance of the surgery.

Elmo, meet Elmoooooooo!!

We'll keep everyone posted via the blog. Please feel free to leave messages or send emails, but don't be dismayed if we don't respond personally to each of you right away. We thank you in advance for your good wishes (and for the cards, emails and care packages we've already received.) Your friendship and support got us through this once; we're counting on it to give us strength again.

Wednesday, March 14, 2007

Feeding Update

On Wednesday, we went to CHOW for a sort of "emergency" intervention with Charlotte's feeding. Basically, she has started pretending to gag. She forces the gag strongly enough to make herself really gag and then, sometimes, to vomit. Most of the time, you can tell a real gag/reflux episode from a behavioral episode, but not always.

I wanted to learn techniques to stop this behavior before she's in hospital next week because I'm really, really afraid to lose ground on the feeding front in her recovery period. We've noticed that when she wants to and is feelign well, Charlotte can drink 7.5 ounces of milk and eat a tablespoon of food. We're looking for tactics to help make that kind of meal the norm.

She forces the gag to try gain control over her feeding, to determine when the meal ends, or to get attention.

So, we got to CHOW and she ate like a dream. She dove into her salmon and macaroni and cheese with abandon. She drank all by herself from a sippy cup. (Now, I know most 22 month olds feed themselves, for the most part. But, remember, if you will, that Charlotte does not.) She was perfectly well behaved. Of course. I told the doctors ahead of time that I was sure she would be an angel for them.

When she was done, Dr. Long taught me some techniques to stop the gagging. Basically a) ignore the behavior or/then b) startle her by saying no (much in the same way you'd talk to a puppy about to pee on the floor). Verbally remind Charlotte to chew and swallow while stroking her cheek and throat. Keep the meal short, 15-20 minutes max. And praise, praise, praise when she feeds herself, chews a good bite, etc.

Hats off to CHOW. It's been 4 days and we're already seeing VAST improvement in her mealtime attitude. Her solid food quantities seem to have doubled since Wednesday and her milk intake is consistently 3-5 ounces in a meal.

Fingers crossed that we'll see this continue after surgery.