Downturn

A Downturn
On Saturday night Evie began throwing up and got a fever near 102 degrees.  Leading up to this, Evie's temp had been running high, she had an increase in oxygen requirements, her face got a little more puffy with fluid, and her skin rash got a little darker.  Evie required platelets twice yesterday and has also required more red blood cells.  Clearly Evie is doing worse than she has in a while.

After all these new/worsening symptoms, Evie's doctor decided to stop her feeds and put her on an IV to give her digestive system a rest.  He ordered bacterial cultures of her urine, trachea, stool, and blood.  All of these have come back negative so far, but it will take until 1am tomorrow to fully evaluate the cultures. The doc also sent a urine sample to check her CMV viral count. While they are looking into possible bacterial infections, Evie's doctor thinks the likely cause of this downturn is that the CMV is kicking up again. . . pretty scary.  There is not much they can do to treat the virus directly anymore, since Evie has suffered major side effects from the antiviral drug.  So I guess they are just going to have to watch, wait, and support her body systems as best they can.

My Daughter is Taking Viagra?
Before this downturn, Evie was evaluated by a cardiologist, who did a very thorough ultrasound of Evie's heart and lungs.  When Evie was born, she had high blood pressure in her lungs, probably due to CMV-related pneumonia.  We now know that she still has this "pulmonary hypertension." Luckily this is treatable, and Evie is on a new medicine to help- Viagra!  I bet you never knew that Viagra was originally developed to treat pulmonary hypertension- It then became famous for it's side effect! It was great to have a little laugh about the fact that my baby daughter is taking Viagra.  It was a relief to know about this contributing factor to Evie's breathing troubles, and a bigger relief to know there is treatment for it.

Bottom is Healing, Pain is Alleviated
I want to let everybody know that Evie's raw bottom has finally scabbed over.  The solution was no diaper for two days straight and continuous oxygen blown on her bum.  It also helps that Evie is on IV nutrition instead of milk, so she is not producing any stool right now.  To help with pain and discomfort, Evie's nurses can now give her morphine if she is unhappy.  I am so glad she can rest peacefully now!

Other Resources?
I have just come to the realization that it may be helpful for Evie's doctors to get in touch with other doctors and CMV specialists outside their network. . . this case is just way too strange and prolonged! So far they have done a marvelous job consulting with the numerous neonatologists in their practice, the head of infectious disease, pulmonology, cardiology, and gastroenterology- but these are all within the Denver area.  Last night I heard that one of the docs will consult with a congenital CMV specialist from Stanford.  I am so glad he is reaching out!  Tomorrow I will ask whether there are other external resources they could tap into:  Is there a nationally recognized CMV hospital?  Are there other national experts who have seen something similar, and could offer support? Luckily, none of Evie's docs are too proud to seek out help if they need it- so I am feeling hopeful that they will tap into any resources possible and communicate openly with me about anything they learn.