April 16, 2021

Seattle Children’s Hospital Update: Imogen’s Endurance

We have seen doctors from GI, Cardiology, Hepatology, Hematology, Immunology, Infectious Disease, Rheumatology, Nephrology, and Genetics. Imogen still does not have an unifying diagnosis, but the doctors are working hard to find one.

Since we have arrived in Seattle, Imogen’s Picc Line developed blood clots around it and it was removed. She is now getting nutrition through a Central Line (Broviac). Due to the blood clots, Imogen is taking a blood thinner via injection twice a day. This blood thinner has interacted with a part of the nutrition she is receiving and her nutrition has now been decreased to allow the blood thinner to work.

Along the way, we were able to find out she has Coombs, which is where antibodies in her blood attack red blood cells. This has lead to some complications with anemia as well. Coombs can be caused by a few different things, including a previous blood transfusion or having to much blood drawn to run tests. Her bone marrow is working properly to produce nucleated red blood cells (baby red blood cells), but she has recently had to have another blood transfusion.

Doctors are hopeful the genetic exome, mitochondrial, and metabolic tests that we are awaiting will have the answers we have been looking for over 100 days.

This journey is hard and seems to get harder by the day. Imogen has to endure constant fevers, troubles breathing, high heart rates, blood clots, abdominal discomfort, liver biopsies, and severe hunger as she fights to get back to her normal.

As parents, watching our baby in so much pain and discomfort is excruciating. Each time the doctors take her away to undergo anesthesia, an instant anxiety courses through us. The longer we are in the hospital, the deeper the fear drives into our souls. The longer the doctors go without a diagnostic and treatment plan, the more vulnerable we feel.

Imogen has proven her strength to us time and time again. Her demeanor brings hope and promises of better days. Our time to go home cannot arrive soon enough.