Room with a view

 

Ethan didn’t have the best weekend physically.  He was very lucky to have it filled with his friends visiting and Jesney all day Sunday.  I spoke with his doctor with an update on Monday with my concerns.  He said the best thing to do is go to the emergency room and then they can see him sooner than his Tuesday’s  (today) cardiology appointment.

Of course Ethan wanted to finish his online classes before going to the hospital. Off we went to begin our whirlwind evening at 2:30. We both had bags packed because I knew we would at least spend one night.

In the ER, they were fantastic.  Very kind and attentive. Ethan had a male nurse that was the best one he has ever had. This guy nailed his iv catheter.  Lots of blood tests were done.  Covid swab, x-rays, EKG, his cardiologist popped by with a plan.

Good news!  Ethan’s heart looked unchanged on Xrays.  His CBC, which is a test that looks at all the different blood cells, looked better.  His white blood cells were normal.  His platelets were normal.  We discussed Ethan’s appointment with the hematologist and that will be cancelled.  It did reveal that Ethan is a little anemic. Anemic means that the number of his red blood cells are less than normal. 

He then had another cardiologist come in with a fellow.  He had so many people in and out of his room it was crazy.

They said that he was positive for mono. Thank god. His extreme fatigue is from a virus.  Mono is dubbed “the kissing disease” because it is transmitted by sharing food, utensils and kissing.  Exchanging saliva essentially.  Adults usually have antibodies and don’t get the virus. Mono causes anemia, sore throat, extreme fatigue and many of Ethan’s other symptoms.  It has also cause his liver and spleen to become enlarged. This has caused his liver values to rise.  This explains why Ethan doesn’t feel much like eating.

I texted Jesney’s mom to let her know that my train wreck of a kid could have possibly given this the Jesney and gave her the warning of what to look for. Ethan felt absolutely terrible that he has put Jesney at risk.

We were transferred up to cardiac ICU for the night.  What a great place to stay if you have to stay in a hospital. We have a room with a view and a private bathroom.  There is a spot for me to sleep. Although Ethan HATES being away from home, he was very thankful to be in a private room.

They are also testing Ethan for Epstein Barr virus.  It is responsible for mono and once someone gets it, it can remain inactive in their system.  This is important to know because it is more likely to resurface with people with a weakened immune system, like Ethan. 

Ethan’s electrolytes were wonky as well. So they gave him some Lasix (the pill that makes you pee) to help alleviate the fluid as well.  The pill was ordered as soon as we got into our room.  The ICU doctor went on a rampage when an hour later I asked when he was going to get the pill. She said “call the pharmacy, I can’t believe it takes that long to count and deliver ONE PILL.” She was mad as fire at the pharmacy.

His liver and spleen should settle down without issue as he heals from the virus. But they remain enlarged

This morning we are waiting on the cardiology team to evaluate Ethan and do an echo.  Last night the plan was to hold off on the evaluation in NYC until the virus passes. This was based on the recommendation of Ethan’s NYC team and his Rochester team. This kid has a lot of people talking about him.

His fever last night was 101.4.  He asked for a fan and it is literally 3 feet away from him on high speed. Now they can’t get his temp to register because the fan is interfering, I can tell by how he looks and acts his temp is normal.

We will find out more as the day progresses.  We are still waiting on labs. I am sorry that I didn’t tell anyone I was here with him.  It was so busy last night, I barely had time to talk to Paul. I needed to be able to focus on Ethan and collect information before letting people know and worrying them.  I was able to face time Avery though. She got to talk to Ethan too. I will keep everyone posted. At this point we don’t need anything. We are holding steady.