thedayhascome

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.

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.

We have been closely monitoring Lucy’s pleural effusion for the past several days and it hasn’t improved or increased in size. It’s a minimal amount that won’t require another chest tube and hopefully it will not affect her breathing. It’s most likely lymphatic fluid that slowly accumulated after we resumed feeding breast milk, and since we have changed her diet, no more should accumulate.

Lucy is now being fed Enfaport, which is a 30 calorie, iron-fortified, milk-based infant formula with MCT fat for babies with Chylothorax. MCTs are an important source of calories for babies with this condition, since they are not transported in the chylous fluid and therefore will not accumulate in the chest cavity. Lucy has been fed with a nasogastric (NG) tube since birth due to prematurity and also an increased risk of aspiration. She’s always had difficulty swallowing because of hypotonia, which is low muscle tone. She normally received six gravity fed bolus feedings a day and each feeding lasted about an hour.

Lucy had been showing signs of extreme abdominal distension, cramping, pain and vomiting since starting the new formula. At first, we weren’t for sure what was wrong. After further investigation and a KUB X-ray, we knew she had gastrointestinal problems and requested to have a consult with GI doctors.

The doctors think Lucy might have rapid gastric emptying also called dumping syndrome, which occurs when undigested food empties too quickly into the small intestine. Treatment includes changes in formula and medication.

We meet with dietitians on Monday to determine what can be done to change the nutritional makeup of her new formula for a long-term solution. Lucy is now receiving a continuous drip feeding of Enfaport to let her stomach readjust and allow her food to slowly digest over a longer period of time. Lucy never stops eating. We have never been so jealous in our entire lives.

We have now been in the hospital for 25 days with Lucy since surgery. I have been home one time to drop off packages. I have officially forgotten what the inside of my own house looks like. Already this year, we have spent nearly half of it living inside of a hospital. 100 days to be exact. My sanity level has finally reached the point to where I could use a Valium and a stiff drink. I would be lying to say it’s been easy. It’s been far from that. The levels of stress would probably bring most people to a complete mental and emotional breakdown and I’m not too far from it. I don’t even think I could justify or even describe in words what life has been like for Sarah and I, but I’ll try to briefly for those who really want to know. And because I need to. I’m never one to complain, but allow me to amuse myself for just one moment.

Immediately following Lucy’s surgery last month, the two weeks in the pediatric intensive care unit was a constant fluctuation of emotions. Lucy’s critical status would change every 10 minutes, from good, to bad, back to good and quickly to worse. Lucy was extremely sick. The majority of the nursing staff agreed that she was the sickest patient in ICU for the two weeks she was there. I don’t doubt it. Her constant changes were paired by a constant intake of caffeine, fast food and no sleep. Imagine yourself, literally sitting on the edge of your seat for two weeks, night and day. Sarah and I were always at Lucy’s bedside and we would never both be gone at the same time. We got about 3-4 hours of sleep every night if we were lucky. Only one of us could sleep in the room with Lucy, so I would take a nap on a couch in the ICU waiting room. It’s amazing how exhausting it is to sit in a chair and stare at a monitor for 18 to 20 hours a day. It’s even harder to see your daughter paralyzed and sedated from drugs, unable to move or open her eyes.

Showers and whore baths were taken in the waiting room restroom. Baby wipes are an amazing invention and an abundant supply was obviously never far away. You know it’s been too long once you use an entire tube of toothpaste. I’m not sure how long you can wear the same clothes over and over, but I’m positive we invented the rule. We still do our laundry inside of the hospital, so luckily we don’t smell too bad. On top of all of the stress and very little sleep, I eventually had to return to work. Sarah is on a leave of absence until next month and the medical bills don’t pay themselves. Speaking of bills, Lucy is the epitome of a million dollar baby. Already, her hospital bills total well over $500,000 and are quickly approaching $750,000 with her recent surgery. Thank goodness for our wonderful health insurance system, who has caused me more headaches than you could imagine.

But the fact is, none of it matters and it never will. On top of it all has been Lucy. Sarah and I just want her healthy and happy. I would live in a hospital indefinitely for the rest of my life for her to never have to go through anything like this again or to experience pain. She has been through so much and it’s time for our sweet little girl to get the break she deserves.

Thanks. I feel better.

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.

Words cannot express how thankful my family is for the generous money donations and packages you have given us. I just wanted to thank everyone again for their love towards my family.

We are donating a portion of the money to support Team Lucy Kate in the Buddy Walk, Down Syndrome Indiana’s fundraising and advocacy event. The remaining portions will be put in Lucy’s savings account and some will help pay for her medical bills.

The response has been overwhelming. I’m very lucky to call all of you my friends. You guys amaze me everyday with your kindness and generosity and I can never thank you enough.

Our thanks to you, truly.
Josh, Sarah and Lucy