The short story

So, what’s been happening?

I am writing this because I know that there are a lot of people who are interested and care about Samantha and what has been going on with her lately. Many people have emailed or called to ask how she is and what is happening. Rather than continue to tell the story over and over and to try to tell everyone everything, it seemed like a good idea to write it all down.

You can also add comments to any of these postings, so that when Samantha gets better, she will be able to read any messages that you want to leave for her. That being said, please know that we will delete any comments that we think are inappropriate.

So, this first post will catch everyone up on what’s been happening. I will do the short story here, and then I will try to post an update every day or so, depending on what is happening. For anyone who wants more details, I will create a couple of posts that will spell out all the specific details of each day since she got sick.

The long and the short of it is that Samantha started to get sick on Sunday, August 26. She had a fever of 103 by Monday morning. By Tuesday afternoon, her fever was worse and her xray showed pneumonia so we were admitted to Holy Cross. She was feeling better on Thursday morning, but had a relapse that afternoon, and we were transported to Johns Hopkins that night for a bronchoscopy and bronchial alveolar lavage (BAL) on Friday. Again, she got better, and even though we had some problems with her medications which caused some damage to her kidneys, we went home on Wednesday night with instructions on how to give her IV antibiotics.

She had a couple of good days, and even went to school for three hours on Friday. Her fever returned for real on Sunday, and by midnight, she was breathing hard and her fever was 102. We came back to Johns Hopkins and were readmitted. On Monday, they did another bronch, BAL and biopsy to see if we were dealing with rejection. She was needing oxygen to breath as well, and on Tuesday she was very tired. Tuesday night, she continued to struggle with breathing although her fever seemed lower. Wednesday morning, they determined that she needed more support and we were sent up to the Pediatric ICU (PICU) where they tried to get her more breathing help. Soon, she needed to be put on a respirator, but when they tried, her heart arrested and she needed to be placed on a heart lung bypass called ECMO.

Over the last couple of days, she has stabilized and they are working to let her rest so her heart and lungs can recover. As you can imagine, this is a long process, and we are just at the beginning. We are hoping that she stays comfortable, gets stronger, continues to clear her lungs and that her heart continues to get stronger.

As for us, one of us is with her at all times now, except for 7-8am and 7-8pm when they kick us out for shift change. We are actively participating in her care, and the whole medical team - doctors, nurses, respiratory therapists - have been very helpful and accepting of our involvement.

Thank you to everyone - your prayers, good thoughts and other help mean a lot to us. I will try to post another update tomorrow.