Our son, Ethan, was diagnosed with peroxisomal biogenesis disorder - zellweger spectrum disorder (PBD-ZSD), a very rare genetic disease, when he was just four weeks old. There is no cure for PBD-ZSD and treatment is symptomatic. This is our PBD-ZSD journey.
I'm typing this from the "family room" at St. Mary's hospital.
Ethan was diagnosed with RSV on Monday when we visited the doctor. Doctor Dan is great and when Ethan wasn't feeling much better on Tuesday we returned to his office. At that time he though that the virus was progressing as usual and that we could go home and call back if needed. Yesterday Ethan didn't seem to get any better or any worse until the evening when the coughing, runny nose, and watery eyes were making him VERY miserable. So, this morning I called the doctor and we went back in. Dr. Dan was concerned enough about Ethan that he decided that he should be admitted to the hospital. So, I called Jeff and he met me at home, we had some lunch, backed our bags and headed to St. Mary's with Ethan.
Ethan has had a chest x-ray and blood drawn, although we haven't heard anything about either of those. They have also been "sucking" out his nose to help him breath - although he hates when the nurses do this, you can tell he feels so much better afterwards. He has not yet recieved any breathing treatments - which was part of the reason I though we were being admitted, but the doctors and nurses have all said his lungs sound great. If this starts to worsen they may start the breathing treatments.
Ethan has sleeping a lot today, which is a sign of how lousy he must be feeling since he isn't usually a napper. While I wish we were home, a part of me is glad that Dr. Dan is being proactive and we know that he really cares about Ethan and our family and only wants what is best for him.
In other news - I received a package from the Royal Mail Service today, and sadly it was not an invitation to the wedding, but it was my purple heart necklace all the way from England. Ethan and I have friends who live in England (Laura is the mom, and Ellie is the little girl) who are impacted by the same nasty PBD disorder. Ellie is just about six weeks younger than Ethan and hasn't been able to leave the hospital in a very long time. Ellie is helping raise money for the hospital ward where she is staying and proceeds from the purple heart necklaces go to help her cause. I decided to wear mine to the hospital today and have been able to tell several people about PBDs, Ethan and little Ellie.
-Please pray that Ethan will be able to kick this RSV and get better very soon.
-Please pray that Ethan will be well enough that we will be able to travel to see the eye specialists in Iowa (we are supposed to leave on Monday for his appointment on Tuesday).
-Please pray that this illness will not worsen the impact of his PBD.
-Please pray for all families and children impacted by PBDs.