Our tiny little panhandler loves to wear sock hats and collect aluminum cans.
Lucy is exhausted from playing with her woobie.
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.
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 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.
Lucy Kate Update XVI
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 XIII
We have been very busy for the past several days. Lucy is finally moved to the Riley Heart Center for her final week of recovery. Her chest tubes and IV lines were taken out and those wounds are healing. We have to change the dressings and wash her every day. This morning we finally gave her a bath and her hair is so fluffy now.
Accommodations in the Heart Center are much nicer than the ICU. Our private room has a couch that pulls out into a bed, several chairs, cabinets for storage and dim lighting. It’s about the next best thing to being home. I’m writing this from the couch right now as Lucy sleeps. The worst part about living in the ICU was only one parent could sleep with Lucy at night. Now we can all finally sleep in the same room. It’s a great feeling to be closer to her.
Lucy is starting to feel much better now. I couldn’t imagine how sore her body is after having a surgical incision, three chest tubes, right arm IV, left foot IV, right thigh femoral arterial line, left thigh femoral vein central line, left arm picc line, pulmonary arterial line, right atrial line and pacer wires. If I could have traded places with her, I would have. I never want my baby to experience pain again.
She’s still going through drug withdrawal, which is awful but it’s slowly wearing off. She finally smiled for Sarah and I and showed her personality for the first time since surgery last night. After all she’s been through, we finally have our little Lucy back.
Lucy has been sleeping for the past two days. She was on a very high dosage of sedatives and it has taken a long time to wear off. When she is awake, it’s only for a brief moment and she still doesn’t quite recognize us or know what is going on yet. As the days go by, she becomes more alert and awake. It will continue to take time for the drugs to completely leave her system, but they have helped to keep her calm through the body’s healing process.
We can now begin to hear her little moans and whimpers as her vocal cords continue to heal from the trauma of having a breathing tube. A little more time and she will let the nurses know exactly how she feels.
Lucy’s three chest tubes will be taken out today and we will finally be able to hold her again. It’s been 11 days now, but it feels like an eternity. Sarah and I are both so excited, we can hardly stand it. Her arterial line that measures constant blood pressure and remaining peripheral IV line will also be removed, because the risk of infection increases the longer those are in.
All of Lucy’s tubes and wires are slowly coming out and within the next several days, we’ll be moving out of ICU and into the heart center for her last final days of recovery before going home. We’re almost there.
Lucy Kate Update XI
What a busy day. We are all exhausted. Lucy made a major step in her recovery and is now breathing all by herself. She failed her first study to see if she could come off the ventilator due to high Carbon dioxide levels in her blood. Eventually, she was ready and they pulled the breathing tube. She’s currently on vapotherm, which is a humidified nasal cannula. It’s providing oxygen through her nose, while she’s in the transition of breathing on her own. She still has three chest tubes and an arterial line, so she will need to have those taken out before we can actually hold her.
Lucy is still on a very low dosage of sedative, Versed. She had also been under a heavy dosage of Fentanyl, so it’s very likely she will begin to show withdraw symptoms and need to be put on Methadone.
We also received so many wonderful care packages today. We’re very lucky to have such thoughtful and caring friends. I can’t express how much it helps to make our stay here a little more enjoyable. I’ll admit that hospital life is really difficult, especially after being away from home. But it’s nothing even comparable to our first hospital stay when Lucy was first born, which was 75 days.
Currently, Lucy is still a little sedated and will continue to wake up more overnight as the medication begins to slowly wear off. She’ll be uncomfortable at times, as she’s still sore from her surgery. Overall, it was a great day and we’re one step closer to going home.