Healthy Heart Club, Update 6

Lucy had a big day yesterday. Her chest tube was removed, arterial line was pulled, pacemaker wires were pulled and sedation was stopped. She woke up a happy, smiling girl. It was so nice to see her beautiful blue eyes again.

We left the ICU and were moved to the Heart Center.

If it sounds too good to be true, it is.

Lucy's blood pressure was really low all night even after receiving dopamine. And in true Lucy fashion, we are back in ICU. Been awake for way too long and we're all in a delirious stupor.

Healthy Heart Club, Update 5

Not many changes today. We started G-tube feedings which she has been tolerating just fine. Trust me, you don't want this girl to go too long without any food in her belly, because if she's anything like her mother (she is), she gets mean as a snake when she's hungry (I'm a dead man).

The main thing today obviously was letting Lucy rest. She slept for 5 hours straight without moving an inch this afternoon. Followed by 3 hours of pure wiggling. It's 10PM now and she's once again fast asleep.

Speaking with the doctors, tomorrow we hope to start taking away some of the toobies that plague our sleeping beauty. On her right hand she has an IV and arterial line, which is boarded and wrapped up. This is referred to as her "clubbing hand", as it works best as a bat. The other hand is covered with a sock secured down with a velcro restraint; child's play for our little Houdini.

She has been doing well on 1 liter of oxygen all day long, which is where she was before surgery. The million dollar question is, will she still require oxygen after she has healed? Time will soon tell.

Healthy Heart Club, Update 4

SHE'S A GRUMPY GIRL DON'T TOUCH HER MOM AND DAD NEED SLEEP SEND HELP

Our little wiggle monster had an okay first night. She was very restless, trying to find that fine line of just the right amount of sedation.

She is on Fentanyl (among many others), a narcotic pain killer, which causes itchy skin, especially in the nose and face. Poor thing will stop at nothing to scratch her nose, which she literally rubbed raw last night with a sock-covered hand.

Should be an interesting sock puppet show today.

Healthy Heart Club, Update 3

Lucy resting peacefully (for now) in her temporary home in ICU. She doesn't plan on staying long so we will skip the decorations this time around.

Lucy is currently on a hefty dose of three sedation meds to keep her from tearing the ICU apart. She's basically one step away from a horse tranquilizer.

She kicked butt today and we couldn't be more proud of her. She's the toughest little soul we know.

Sleeping Beauty

Our gentle giant is asleep for now. We are not responsible for damaged property from this child once the sedation wears off.

Healthy Heart Club, Update 2

Good news, Lucy is off of bypass! Her little ticker is pumping again and they got her chest closed and stitched.

The best news of all, is that she's comfortably breathing on her own on 2 liters of oxygen. We are absolutely thrilled that they were able to pull her breathing tube so quickly after surgery this time.

We are still anxiously waiting to be reunited with our little peanut and can't wait to see her. More updates tonight.

Bye Bye

Take care now, bye bye then
Another funny animation I made from two photos of Lucy.

Tiny Little Hobo

Lucy loves to wear her sock hat and collect aluminum cans.

Kickin' Legs

"Yeah! I'll show that cow who's boss! WHERE'S MY MILK!?"

Fingers

Tiny Fingers, Tiny Toes, Daddy uses his hand, to pinch my nose.

Cuddles

Daddy cuddles his Bug.

Lucy Kate Update XVI

Lucy has been back in the PICU for six days now recovering from acute pulmonary edema after nearly having a code blue called in the Heart Center. Most of the fluid in her lungs is now gone and the pleural effusions around her lungs are dissipating as well. She has shown much improvement over the past several days and her daily chest X-rays continue to look better.

Lucy's flow of oxygen has been decreased and she will soon be back to just a nasal cannula. We hope as she continues to recover, that she will not require oxygen when we are discharged from the hospital, but time will tell. She had been receiving her nutrients intravenously, but she's back on a continuous feeding pump and we are slowly increasing the amount so that her stomach can handle digesting food.

Lucy has been playing more, feeling better and making major progress now that staff intensivist doctors are back in control over her care and she will most likely remain in the ICU until we are discharged to go home.

Lucy Kate Update XV

Lucy woke up this morning crying and gasping for air. Her lips and tongue were completely blue, she was cyanotic. Her oxygen saturation was in the low 40's and she was basically in respiratory failure. Lucy was given extra oxygen to bring her saturation levels back up and an arterial blood gas was quickly taken to determine what might be wrong.

pH is a scale that measures how acidic or alkaline a substance is. The scale ranges from 1 to 14 with 1 being very acid, 7 neutral and 14 very alkaline. The pH of your blood is extremely important. The ideal pH level for your blood is right around 7.35 and your body goes to enormous lengths to maintain this level. If the pH of your blood falls below 7.35, the result is a condition called acidosis, a state that leads to central nervous system depression. Severe acidosis, where blood pH falls below 7.00, can lead to a coma and even death.

Lucy's pH level this morning was 7.099.

Luckily, she was stabilized and given bicarbonate, then immediately transported back to the pediatric intensive care unit and we have been here with her all day. The ICU doctors are closely monitoring and working to determine what could have caused Lucy's respiratory status to decline so rapidly and what might be causing her pulmonary edema. We all hope to have answers soon. Please continue to keep Lucy in your thoughts.

Bright Eyes

Lucy and her bright, beautiful eyes.

So Silly

Lucy giggling, sticking her little tongue out.

Lazy Bug

"I'm all reclined and comfortable in my bouncy seat. Can someone bring me the remote? This Baby Einstein DVD is boring me."

Lucy Kate Update XIII

Lucy experienced trauma to her lymphatic vessels during her heart surgery and it has created several complications. She was moved back to the intensive care unit over the weekend to have a chest tube put in to drain the chylothorax near her left lung. Her respiratory condition improved over several days after the fluid disappeared and her diet was changed. She didn't have an increase in fluid collecting around the lungs and was eventually moved back to the Heart Center for recovery on Tuesday.

For the past several days, fluid has began to collect again, this time around her other lung. At first, it appeared the change of diet allowed the lymphatic vessels to essentially heal themselves and it was safe to resume with feeding breast milk. We're still unsure if the new fluid around her lung is due to all of this or is now something completely different.

She has continued to require oxygen the entire time to maintain a comfortable saturation level and will most likely require oxygen at home when she is finally released. We will continue to monitor her with with multiple daily X-Rays and increased diuretics. We will remain in the hospital for at least another week until we have a greater understanding what the fluid is and where it is coming from.

Lucy Kate Update XII

Lucy is back in the pediatric intensive care unit (PICU). She has a Chylothorax, which resulted from trauma to her lymphatic vessels during surgery. Lymphatic fluid (chyle) has been slowly accumulating inside of her pleural cavity, putting pressure against her lungs and preventing her from oxygenating her blood efficiently.

She now has another chest tube on her left side to quickly drain the fluid away from her lungs. Omitting fat from Lucy's diet will be essential for the chylothorax to eventually stop and the lymphatic vessels to heal themselves. We will remain in ICU for the week to monitor her progress.

Lucy Kate Update XI

Lucy still has fluid near her left lung inside the pleural cavity. It's constricting how far her lung can expand to oxygenate her blood and she will continue to receive oxygen through a nasal cannula until it dissipates. She's being given a diuretic to help force the fluid out of her body, but it's obviously not targeting the fluid directly in her lung.

Overall, her recovery is still slowly progressing forward. The echocardiogram of her heart that was taken yesterday showed the tricuspid valve and mitral valve have some regurgitation, so she could be a candidate for valve replacement once she gets older, but it's nothing alarming at this point. The echocardiogram also showed a small Ventricular Septal Defect (VSD) still in her heart, but again, nothing alarming yet. We are still waiting to speak with the cardiology surgery team and surgeon about the results.

Lucy has been extremely fussy and crying a lot for the past five days. We recently stopped medication that we believe was causing her increased irritability. She is almost back to her regular feeding amounts and schedule. She's finally keeping milk down and working to get her weight back to where she was before surgery. She'll be a chunk again in no time.

We will be discussing our plan with the doctors today to determine a goal for leaving the hospital. Lucy is growing tired of laying in bed at the hospital and is ready to have more fun at home. I can't blame her, we are too.

Lucy Kate Update X

Lucy’s recovery has gone well. We have been in the Riley Heart Center for four days now and we’ve made progress to get her medications and feeding schedule/amounts adjusted. She’s feeling a little better and is mostly smiles now, but has been extremely fussy and has had periods of constant crying. Her sleep cycle was completely backwards, but we’re working to get her back on track. She’s still on a nasal cannula with ¼ liter of oxygen, which is minimal. Her oxygen saturation drops when she is in a deep sleep, so she’s getting an echocardiogram today to determine what might be causing that.

After we get her off the low amount of oxygen, we’ll be very close to going home and taking care of her there. She still has a lot of time to recover and get her strength back. She lost nearly three pounds during surgery, which doesn’t sound like much, but it equates to about 20% of her body weight. To put that in perspective, I would have lost 35 pounds, so it was obviously very traumatic to her body and she’ll need months to fully recover, but we’re in no hurry.

Lucy will continue to recover in the Heart Center and hopefully she can come home sometime this week and be right where she belongs.