MICkey button saga

The overdue promised update on the two recent replacements of Charlotte’s MICkey button:

As the cardiac surgeons prepared for heart surgery they removed Charlotte’s MICkey button and replaced it with a Foley catheter. I’m not really sure why. It seems this is just what they always do. Logically, Charlotte only needed “egress” from her stoma for a day or two, and she definitely needed the gases to be able to flow freely out. Also, the Foley eliminates any concern about an extension tube coming out or the button itself getting yanked by accident.

In any case, as soon as Charlotte was able to take food by mouth, our PICU nurse replaced the Foley catheter with a brand-spanking new MICkey button. We get a new one every 3-5 months and we were due.

The new button seemed just like the others-it was a little loose, a little twirly in the stoma, and occasionally looked like it was really sticking out far from her tummy (they’re supposed to lie pretty flat on the belly).

A week after the surgery, Charlotte’s babysitter Jenna called me at work, worried that the button looked like it might fall out. She saw a lot of leakage between the button and Charlotte’s tummy. Since we hadn’t really experienced that before and Jenna know what the button usually looks like, I had her tape it down and I immediately made an appointment with the pediatric surgery clinic.

At clinic on Friday March 30, Teri, our surgery APN, measured the length into Charlotte’s tummy (pretty weird—she had a measuring-tape type thing that she stuck into the stoma. I did NOT watch) and decided that the button we had was too long. We (Teri and I) now think this may have been a problem for a long time given that we haven’t taken this measurement in a year. She put in a new button and we were on our way.

All this took, by the way, 10 minutes.

I got home and found that it was very difficult to put the extension tube in or take it out. We had to really push on the thing. The whole weekend was rough—Charlotte didn’t want us to touch the tube because we had to fight so hard to get it in or out. But, we did have to take it out for a bath a few times. We lived like this until Wednesday when I got quite fed up.

So, during our Cardiology check up, I discussed it with the Cardiology APN, Debbie. After a quick phone consult with Teri, we realized that the button itself was likely defective and we made an appointment to have it replaced.

Charlotte and I left Cardiology, went home for nap and lunch and returned to the hospital. Teri replaced the button and we were, again, on our way. But, yes, we did spend ALL day in the hospital on Wednesday.

The new button is perfect. Hopefully it will last for several months!

Heart Update

Charlotte had her first post-surgical cardiology visit with Dr. Young.

Dr. Young was quite pleased with her progress: She's gained weight since her surgery (at the pediatrician's last week she topped out at 26 lbs.). Her heart sounds good and there is only a slight "swish," mostly the sound of blood through the conduit. No regurgitation sounds. And, her chest x-rays looked good.

Princess Charlotte getting ready for her x-ray.

Charlotte was a trooper--she smiled for the camera during her x-ray and most of her EKG. My secret weapon? The camera. Little Miss Diva-in-Training loves having her picture taken. So, we explain that the x-ray machine is a camera and so is the EKG machine.



Also, having a wonderful technician who thinks to have Charlotte help put the stickers and lead on. Pure genious.


Finally, a smile. That wasn't so bad, was it Charlotte?

Recovery #4: Are You Sitting Down?

Today, 3 p.m.

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.

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.

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.....

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.

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!

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.