Lauren is still at Egleston

Finding time to complete an update in the hospital is near impossible. Access to a computer is limited and since we've been moved from the CICU to the Step Down Unit, we're either constantly meeting with nurses, techs, doctors, and consults or providing constant care for Lauren. It's become a juggling act just to find time for a quick bite. Time here at Egleston feels like it's in slow motion. This past week feels like a month has already passed. Coupled with some of the really sad events we've seen with other patients and being separated from our other three children, Michelle and I are mentally and emotionally drained. I'm sure it will show in the tone of this post.

Update from the CICU
Recovery in the CICU was slow and tough. We originally expected Lauren to be extubated from the ventilator the morning after surgery. However, due to excess internal fluids in and around her lungs, she had to stay on the ventilator until late Sunday night. Lauren has shown obvious signs of pain, discomfort, and distress. At one point this weekend, she spiked a fever which could indicate an infection in the heart from the repair. After running some blood cultures and giving her some antibiotics, we were able to rule out this dangerous scenario the next day. She started to show progress once she was breathing on her own. Before being extubated, we were prepared to be in the CICU for another week. However, Lauren overheard our concerns and decided it was time to start breathing on her own. Her various chest tubes and most of her IV's were eventually removed. All that remains are the pace maker wires plugged directly into her heart and one IV for meds in her foot. Originally, Lauren wouldn't have anything to do with her feeds. We had to place an NG Tube up her nose and down her throat to her stomach to force the formula into her body. However, she came around and showed us she can chug formula with the best of them. Actually, her feedings have greatly improved compared to pre-op. She's gone from drinking 2 ounces in 45 minutes to 6 minutes. This is much like her sister, Morgan.

Update from the Cardiac Step Down Unit
Lauren was released to the step down unit yesterday afternoon. She is now coughing out mucus from the fluids in her lungs. This mucus is causing her to gag and choke frequently. Since Lauren was intubated for a longer period of time, we're not certain if the heart surgery has resulted in damage to her left vocal cords or if her throat is just really sore. Either way, Lauren doesn't make any sounds when she cries. Her cries have been so violent she holds her breath while crying until she starts choking and her head is as red as a can be. Crying without any sound makes this episode pretty intense to watch. It's been very difficult to calm her down when she get's like this. In the CICU, the nurses would give her morphine to relax her. In the step down unit, we keep a very close eye on her. We've been doing the 7 mile walk in between feeds and the nurses are constantly checking her oxygen levels, blood pressure, and heart rate. So far, her vitals have remained strong.

At this point, we're not sure when we are going to be discharged. Lauren still has pace maker wires plugged into her chest, she needs to transition from IV meds to oral meds, and she needs to demonstrate she can tolerate her high calorie diet. They started her on a 20cal/oz diet and moved her to 24cal/oz. She needs to show she can take in 27cal/oz before leaving. I've been trying to get Lauren home since yesterday. However, they want to keep a close eye on her. At the very least, she will need to be here for another day after the pace maker wires are removed from her chest and she transitions to the oral diarretics. I'm trying to get all these orders put. We are also waiting to meet with an Ear, Nose, and Throat (ENT) doctor to evaluate the condition of Lauren's vocal cords. We hope they will find no issues.

Ready to Get Back to Life
We're so grateful this is Lauren's last operation. Every stage of this experience is so different and just so tough. Whether it's the part where we handed Lauren off for surgery, waiting during surgery, recovering from surgery, or waiting to be discharged, we're just so tired and drained. The staff here is incredible and we'll forever be thankful. However, the experience is overwhelming.

We miss Kirsten and Ethan so much. They've been bounced around from place to place this past week, but, they are doing well. Morgan is also doing well with Grandma. It's been impossible for me to get back to work. We originally planned on me working this week during the day and staying at the hospital at night. It's just been really tough to work this out. Right now, Michelle and I just want to get all our children back under the same roof and for normalcy to be restored.

We hope all is well with everyone. Thank you to everyone who have been keeping up with us and doing so much for us. At some point, we hope to be able to repay each and everyone of you for your help and support.

Anxiously waiting to go home,

David and Michelle