I am so sorry to hear about your son. I have a child about that age, and can't imagine.CMV is not a typical infection in someone with a healthy immune system, usually we see it with transplant or lymphoma but there can be congenital immune system problems that predispose to severe CMV. It can certainly cause all of the symptoms your son is showing including the petechial rash and severe pneumonitis leading to ARDS. It can affect nearly any organ.However CMV can also reactivate due to stress from other issues so it is difficult to say if this is the cause of his symptoms, or just a sign of how sick he is. While it is risky to do a lung biopsy in a person on venous ECMO, if there is no diagnosis within a week it is reasonable to proceed with doing this, with fairly good safety outcomes.https://pubmed.ncbi.nlm.nih.gov/27894766/The most important thing though is if the treating physicians think not only is it safe (there are other issues such as clotting/platelet disorders beyond ECMO anticoagulation) but if it will change management. Unfortunately a large percent of biopsies will be indeterminate - just showing nonspecific findings of diffuse lung damage from ARDS - and the ones that do change management are generally because they find something that is not treatable. I would entirely defer to your physician team here. They also want very much what is best for your child - doctors and nurses care much more than you may see about thing turning out well - and have the data and expertise to properly advise you.If it is CMV, then the inflammation from the infection will lag well behind the time the virus is cleared with antiviral therapy. He may just need time for the inflammation to improve and then to heal to allow decannulation.
6 year old dying from ARDS all labs are negativeHello, on March 15th my 6yr old son had a fever and cough. This continued through March 17th. He seemed fine the entirety of March 18th. On March 19th he started presenting with a full body light petechial rash and fevers. Appetite, fluid in take and behavior were all very normal. Would occasionally become sleepy with the fevers. Fevers would come down with Tylenol. Over the next two weeks the fevers became more frequent but were still easily treated with Tylenol. On March 31st he began to lose energy and didnt really want to get out of bed. On April 1st he started refused food and drink. The early hours of April 2nd he began vomiting. We had several appointments with his PCM, urgent care, and nurse telehealth during these two weeks. All advising its just something viral and should resolve on its own. After refusing food and drink and then vomiting we decided we couldnt wait the 24 hours to his next appointment and took him to the emergency room. He began requiring blow by O2 while sleeping from night one at the hospital. The petechial rash started to become severe in places where he had any medium to heavy pressure (blood pressure cuff, being held for accessing his port a cath). On April 4th he began needing supplemental o2, between 1.5-5L. After a week in the hospital he was diagnosed with a severe CMV vierma infection. He was started on gancylovir to treat on April 10th. After a few weeks of treatment his CMV levels have finally come down to the 100s (as of early this week). On 4/13 he was out on high flow o2 due to hypoxia. He continued to range in requirements of 15L-30L and 60%FIO2 -100% FIO2. We were advised his lungs would begin to heal as his cmv number declined which has clearly not been the case. On 5/1 he was rapid-ed to the ICU due to expected impending respiratory failure with hypoxia. In the icu he had episodes or high hr, blood pressure, and low O2. However, these episodes were short lived at the beginning and after they were over he would go back to his normal goofy self. Over the next 36 hours his episodes became longer and more frequent. He has a planned intubation set for May 3rd at 6am and a planned brohncoscopy set for May 3rd at 9am. Original plans were to begin attempting ex-intubation post procedure. However at approximately 3am on May 3rd he had an episode that did not resolve. He was placed on a ventilator which failed due to CO2 build up, oscillator was attempted and failed due to CO2 build up. He was then placed on bivalve ecmo on max pediatric settings. He remains on max ecmo settings to present day. He has since been diagnosed with ARDS. He has had an extensive infectious disease work up and rheumatology work up. Every test result has come back negative. Tests show high levels of inflammation. Doctors at our current hospital refuse to do a lung biopsy due to expected death during or as a direct result of the procedure. Please help. We are being told were reaching the end of our options here. We have a second opinion request put in with Boston Childrens Hospital but are willing to travel anywhere that may be able to help him. I can provide any and all test results you need to help and the team here is typically willing to run more with plausible explanation. He has a complex medical history as well be no full encompassing genetic diagnosis.He is currently on anti fungals, antivirals, and antibacterials. He also has a BMX drip for a diuretic. He is on several medications for sedation and pain management for ecmo.