Hey it’s Alexx.
Sorry for the delay in blog posts. I’ve been home sick with a bad head cold so haven’t made it over to the hospital since Thursday. But I’m back here now, very happy to see my mom again.
5/19 Day + 42
I had an OT and PT session. Definitely feeling the effects of the pneumonia setback.
The EBV dropped from 400K to 100K after the 1st Rituxan treatment and a repeat level was sent today which will reflect my response to the 2nd treatment.
I Slept well. Cough is back but might take time to resolve.
Unfortunately after 32 hours without a fever, I became febrile again in the evening. I felt very tired and unwell. Dakota slept over which was good because I don’t like being alone when I’m not doing well. My family has been amazing.
5/20 Day + 43
Overnight I had ongoing fevers with a fast heart rate. Thankfully my blood pressure remained stable. I required more oxygen during the day (up to 5.5L) and I was very out of it. I couldn’t keep my eyes open. They wanted to do a bronchoscopy but they don’t think I’m strong off enough to handle it. My lungs are too weak. They added more antibiotics. Ambisome and Levaquin. They did an ABG (arterial blood gas) to test the levels of oxygen and carbon dioxide in my blood, that was “okay”. The ICU doctors are following closely. I’m getting repeat CT scans tonight of my head, sinuses, chest, abdomen and pelvis. They want to rule out any occult infections or inflammation I might have in addition to the pneumonia. It’s unclear if the PNA is the ongoing problem or if it’s something else they haven’t found yet. Sometimes the Rituxan, which I got for the EBV, can cause pneumonitis which fits some of my symptoms. It’s just not a clear picture yet.
I got Reiki this afternoon from Saigon (the Buddhist monk) while Ric gave me a foot massage and James Taylor played in the background. I felt a little better after this and my oxygen requirement went down to 3L. I drank a smoothie.
Alexx woke up with a bad cold so she stayed home today because she doesn’t want to risk exposing me to anything. It was very hard for her to stay away and give up control but she trusts her team. She called Ric every hour.
Dakota had his last day of work today so he will be able to help out more which is great.
I’m very fed up and frustrated. My course has been far more complicated than any of us could have predicted. But I will keep fighting. Thank god we flew back to NY when I was stable.
5/21 Day +44
Quiet day. Ric went home and Risa visited. My vitals were stable and I didn’t have any fevers.
5/22 Day +45
Fever of 101.5 at 2am with stable vitals. It got better with Tylenol. Otherwise the day was uneventful. Ricky spent the day with me and we did some PT/OT. I drank a smoothie and butternut squash soup that Lori made me.
My abdomen is more distended than usual. I’m having bowel movements. It isn’t hard or painful. Just very bloated. They are going to do an X-ray of my tummy to make sure everything is okay.
I’m feeling very down and negative. Everyone keeps telling me I look better but I don’t feel better. I keep having setbacks that make me weaker. I want to start PT. I want my life back.
Dakota and Lisa planted the garden for me. Lots of fresh herbs and tomatoes so everything is ready when I return home. I can’t wait for that day.
May 23rd Day +46
A new day. Fever of 101 in the early morning, otherwise vitals stable. Worked with PT today.
The ID, Hematology, and Pulmonology team are discussing if we should pursue bronchscopy or not.
Saigon came today to meditate with me and Alexx. We talked a bunch and then meditated with the Tibetan Prayer Bowl.
Alexx has been with me all morning. Then she is going to look at apartments with Ric. Jan is coming for a quick visit. Then Ric and Dakota are spending the late afternoon/evening with me. Love and light.