Posts tagged "heart surgery"

After 46 days in the hospital, Lucy’s heart is fixed and she’s finally home, right where she belongs. Thanks again everyone for your love and support. You have made this experience something we’ll never forget.

After 46 days in the hospital, Lucy’s heart is fixed and she’s finally home, right where she belongs.

Thanks again everyone for your love and support. You have made this experience something we’ll never forget.

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notes: 254

Lucy Kate Update XXIII

Lucy has been doing very well for the past week and we have gotten to the point to where she can now be safely clinically managed with a huge list of medications. She’s currently taking Poly-Vi-Sol vitamin drops with iron, Aspirin, Omeprazole for reflux, Atenolol & Captopril for the treatment of hypertension, Digoxin for congestive heart failure, Spironolactone, Furosemide & Chlorothiazide sodium to manage excess fluid associated with congestive heart failure and Sildenafil to treat her pulmonary arterial hypertension (PAH). The combination of these medications help manage the many complications with her heart and lungs.

One of Lucy’s medications, Sildenafil, otherwise known as Viagra, is also used to treat erectile dysfunction. I’m not responsible for the loss of this prescription when we get it fulfilled at the pharmacy. Sorry about your lungs, Lucy.

Her PICC IV line was pulled today and we are preparing to be discharged from the hospital soon. It’s been a long time since we have been home, 45 days to be exact. We have been living inside of the hospital since the middle of August. We can’t wait to use our own shower and sleep in a real bed. It’s going to be so awesome.

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notes: 70

“Take care then, bye bye now”

“Take care then, bye bye now”

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notes: 109

Our tiny little panhandler loves to wear sock hats and collect aluminum cans.

Our tiny little panhandler loves to wear sock hats and collect aluminum cans.

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notes: 111

Lucy is exhausted from playing with her woobie.

Lucy is exhausted from playing with her woobie.

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notes: 75

Lucy Kate Update XXII

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.

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notes: 60

Lucy had a lot fun playing in her bouncy seat today, but she just can’t seem to catch a break. She hasn’t been feeling well today and currently has a slight fever, so she’ll be treated with two very strong antibiotics to be cautious against risk of infection. Her pulmonary edema has slightly improved for the past several days after changing the dosages of diuretics to increase the excretion of fluid in her lungs. Lucy is also back on vapotherm, which delivers a high flow of oxygen to assist with her breathing and prevent tachypnea (increased rate of breathing) and an increased work of breathing. By definition, Lucy is in congestive heart failure. because the cardiac output is low and insufficient for her body’s needs. Lucy continues to puzzle the Doctors as to what is wrong. She may require another cardiac catheterization that will provide a very detailed look at her heart and other anatomy.

Lucy had a lot fun playing in her bouncy seat today, but she just can’t seem to catch a break. She hasn’t been feeling well today and currently has a slight fever, so she’ll be treated with two very strong antibiotics to be cautious against risk of infection. Her pulmonary edema has slightly improved for the past several days after changing the dosages of diuretics to increase the excretion of fluid in her lungs.

Lucy is also back on vapotherm, which delivers a high flow of oxygen to assist with her breathing and prevent tachypnea (increased rate of breathing) and an increased work of breathing. By definition, Lucy is in congestive heart failure. because the cardiac output is low and insufficient for her body’s needs.

Lucy continues to puzzle the Doctors as to what is wrong. She may require another cardiac catheterization that will provide a very detailed look at her heart and other anatomy.

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notes: 74

Lucy Kate Update XX

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. We rushed to get doctors immediately to intervene. 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.

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notes: 54

Lucy Update XIX

Our hospital stay is quickly becoming a nightmare. Lucy was switched from a surgery cardiology team in the ICU to a different service after arriving in the Heart Center and they have made no progress all week or offered any advice to help her current issues, which aren’t even specifically related to her heart. Lucy has been experiencing some pretty severe gastrointestinal problems and also pulmonary issues, requiring increasing amounts of oxygen to keep her saturation levels at a comfortable level. She also now has moderate Tricuspid Valve Regurgitation in her heart since surgery and we have to closely monitor that to ensure that it doesn’t quickly become life threatening.

Lucy has good days and bad days. We can tell when she doesn’t feel good. Some days there isn’t much we can do to console her, other days she is all smiles. The best thing for her now is to be at home where she can get her rest and get stronger.

We have voiced our concerns about the care Lucy has received after arriving back at the Heart Center. We have a conference scheduled tomorrow to work on managing her care. We are Lucy’s voice and as a parent you have to look out for the best interest for your child. The past week has been emotionally and physically exhausting. We hope to make some progress tomorrow and get out of the hospital sometime this century.

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Lucy hanging out on Daddy’s lap.

Lucy hanging out on Daddy’s lap.

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notes: 140

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