Friday the 13th

Our beautiful Elise curious and content, settling down for a rest Thursday evening. She has already developed her social smile. I tried to catch it her. Her smile will melt your heart. We're getting sleepy now. Intubated again.

Where to start with the events over the last 24 hours...

Elise has been having trouble this week since the development of some pneumonia last Saturday. She's been having episodes where she gets fussy, nothing new, but she had shown us that she has very little reserve with her oxygenation. It doesn't take much stirring up to get her to fall into the high 70s. When she had these episodes we would notice a scared look on her face and she expressed an inability to move air very well. She would sometimes snort, but her breaths were uncoordinated, almost gasping. We were able to transition her from the oxygen tent to a nasal cannula on Thursday at about 180 ml O2. When she desatted we used blow-by, or a tube of high-flow oxygen "blowing air" by her face. This was sufficient enough to let her and I have skin-to-skin time Thursday where I let her sleep on my chest. It felt really good, even though she and I made vomit sandwiches. We left her about 11:00 Thursday evening and she was lying peacefully as you see above her cute little outfit. She was intermittently dropping her sats to low 80s, high 70s, but seemed in no acute distress and was having no color changes. We almost didn't believe the monitors.

This morning (Friday) we received a call from the NICU about 2:30 explaining that she again decompensated and noninvasive methods of ventilation were unsuccessful. Her heart rate dropped and they intubated her. It took several minutes but they were able to get her oxygen saturation up to 100%. The nursing staff told us that once they intubated her, they felt a "release" of her airway pressure, indicating that she was likely having bronchospasms, or a tightening up of the airways similar to that of asthma. We arrived in the NICU to see them already weaning support, by lowering the mandatory ventilation rate and her FiO2 (fraction of inspired oxygen). So they made an attempt at extubation mid-morning as she was weaning well and fighting the tube. This went very poorly and with reintubation they experienced more difficulty in getting her sats back up. They had to give her quite a bit of meds to get her sedated: pentobarbital, ativan, fentanyl, and versed. Any bit of agitation dropped her sats tremendously and required bag ventilation. The differential for her situation has been continued trouble with her pneumonia with increased airway secretions vs. bronchopulmonary dysplasia (BPD), also known as neonatal chronic lung disease, vs. recurrent pulmonary hypertension. So first, her pneumonia could be worsening and creating more airway secretions that prevent her from oxygenating. Second she could have chronic lung disease with episodes of bronchospasm where her airway constricts allowing air in easier than letting air out. This is similar in mechanism to an asthma attack and literally causes suffocation. The third possibility is that her pulmonary vasculature is clamping down again, causing a relapse of her pulmonary hypertension. With the last possibility in mind, they performed an echocardiogram on her to look and the structure and function of the heart. The notable findings of the echo were that her right ventricle, the chamber that directly pumps blood to the heart, was dilated. The is a sign that blood pressures in her lungs have been elevated and her right ventricle has dilated like a balloon under pressure. The is a sign of decompensation and very concerning. The physician at St. John's made a call to Dr. Downey in St. Louis to get some insight as to Elise's history of desaturations while in St. Louis. The plan was to see how Elise responded to the intubation, and as I understand it, she would be expected to improve in the case of pneumonia or BPD, but not necessarily with pulmonary hypertension. And so this evening she has had several more episodes of desaturation that have required bag ventilation and prolonged efforts to return her to good saturation. With this trouble, the picture is looking more like pulmonary hypertension with the possibility of returning to inhaled nitric oxide (iNO). The call was made to St. Louis and the team is assembling with iNO capabilities and will be making their way here. We left her at about 8:00 and she was on pressure-controlled ventilation at a rate of 30. This means that thirty times a minute a controlled amount of air pressure is delivered into her lungs through the endotracheal tube. The air delivered was 90% oxygen. She was being sedating with doses of versed and a fentanyl drip. Cefepime was added to her regimen of vancomycin and gentamicin to catch additional possibilities such as enterobacter, serratia, etc. However, since then we've have more desatting episodes. They will be keeping her comfortable and have their eyes close on her until the SLCH team arrives. We don't know if it will be a ground or air transport. I had a talk with Dr. Downey this afternoon, and Dr. Hackett will be assuming Elise's care until the end of the month. She spoke highly of him, and he seemed very nice when we met him at the end of May. Kristin and I feel very comfortable with the care she will receive in St. Louis. I will remain in Springfield working and rotation with the general/trauma surgeons. We will keep you all posted, please limit phone calls as possible as we work through this difficult time. Love you all,

Jason