Sidney is very sick with RSV (Respiratory Syncytial Virus) and RSV pneumonia. She tested positive for RSV early last week, but at that time she showed no symptoms of the virus. When I left for home on Friday Sidney was still doing well. She was smiling and drinking lots of her water. Saturday she needed to be reintubated. By Sunday the virus seemingly took over and she is suffering many consequences of the virus. She has been requiring very high vent settings to maintain her sats and tonight she is being switched over to the oscillating vent.

Tonight I made the very difficult decision to sign consent for Sidney to be treated with a drug called Ribavirin. Ribavirin is not FDA approved except for “compassionate use”. “Compassionate use” refers to the treatment in seriously ill patients with an ‘experimental, unapproved’ drug when no other treatments are available. Sidney’s Rappamune (immunosuppressant) has been held the past three days so that she may rebuild some of her own immunity to help fight the pneumonia. Holding the immunosuppressant obviously can lead to rejection and regardless of whether or not the immunosuppressant is held, Sidney will still have a suppressed immune system.

Ribavirin has it own consequences. It can cause hemolytic anemia, it’s nephrotoxic, and it can lead to low hemoglobin and hematocrit levels. Ribavirin has been shown to be effective in actually destroying the virus itself and it helps to manage the RSV symptoms. While as with any virus I could’ve chosen to ride out the virus and hope Sidney recovers, but despite the consequences of the drug I feel I at least have to try it. I’m not certain I’d be able to forgive myself it I didn’t try it and ‘something’ happened.

I started this journal entry late last night, but I crashed before I finished. This morning Sidney remains on the oscillating ventilator on moderate settings. Her fluid level continues to be positive which is probably playing a role in the difficulty venting Sidney and her difficulty maintaining her sats. They are going to put in another dialysis catheter and try to dialyze her.

Directly taken from the Centers for Disease Control:

RSV is spread from respiratory secretions through close contact with infected persons or contact with contaminated surfaces or objects. Infection can occur when infectious material contacts mucous membranes of the eyes, mouth, or nose, and possibly through the inhalation of droplets generated by a sneeze or cough.

I should’ve taken Sidney home weeks ago!

“For I know the plans I have for you declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future” ~ Jeremiah 29:11

Thank you to everyone who came to Sidney’s birthday celebration Sunday. My family enjoyed spending time with all of you. We had so much fun! I’ve said it many times, but I wish that Sidney could have been there with us to celebrate. We will cherish the wonderful memories forever!