11/22 Update
Family Update
We finally have everything pulled together from the last couple of days — the CT scans, the heart ultrasound, and today’s fever event, so here’s the full picture currently.
1. Heart Ultrasound (Echo) — Very Good News
Her heart looks strong and healthy.
•Normal pumping function (ejection fraction 62%, which is excellent)
•No thickening of the heart muscle
•The right side of the heart — the part most affected by lung issues — looks normal
•All valves open and close normally
•Only tiny valve leaks, which are common and not concerning
•Pressures in the heart and lungs are normal
•No fluid around the heart
•No change from her last echo in September
Her heart rate was fast during the test, but the structure and function were still normal.
2. Chest CT Results
•No new lung clots — huge relief.
•She still has a few old, tiny clots in the small lung vessels, but her body has already created detours around them. (Apparently this is rare but in some people it has been documented. Sometimes the body just finds a way)
•Two major veins near the heart are very narrowed (the right brachiocephalic vein and part of the SVC).
•Imagine a pinched straw — blood can still flow, just harder.
•This narrowing is likely from years of central lines and scar tissue.
3. Abdomen/Pelvis CT Results
•Her small intestine looks a little swollen/irritated, which can happen with inflammation, infection, or because her Crohn’s medicine (Entyvio) hasn’t fully kicked in yet as are re-starting it after being off it for a year. (More on this another day)
•She has severe fatty liver, meaning there’s a significant buildup of fat in the liver. The doctors are aware of this and will factor it into her treatment plan.
4. Today’s Fever Event
Becke hasn’t had a real fever since Wednesday, not like at home the last 2.5 months, with the highest she reached since being admitted was 99.5°, and only briefly. Today she finally spiked a true fever at 102.5°.
The nurses gave her Tylenol right away to bring the fever down, even though the doctors wanted to draw labs and cultures while the fever is still high. This led to a big emotional and lashing out moment for Becke. Of course we apologized to our nurses and staff as they have orders and are doing their best even if we don’t understand in that moment, why they do the things they do.
The doctor came in afterward and explained things clearly:
A fever spike usually means the body is fighting an active bacterial infection.
Tylenol does NOT affect the bacteria, it just lowers the fever. Even if the fever drops, the bacteria stay detectable in the blood for about five hours after the spike. (We didn’t know this) As long as labs are drawn within that window, they can still get accurate results.
Going forward, no Tylenol unless she spikes again — and if she does, they’ll likely draw another round of labs during that window.
She has retained alot of water weight, going from 182lbs to 210lbs. They are working on this and currently shes down to 200lbs.
Overall
There is nothing immediately life-threatening in any of her scans.
•Her heart looks strong.
•No new lung clots.
•The narrowed veins and irritated intestines are being monitored.
•And now we have a better understanding of how they’ll handle fevers and labs moving forward.
We’re still waiting on Cultures to grow and the blood work from today. Cultures generally take 3-7 days per set. so Monday we should start hearing about the first sets that were taken earlier this week. For now, we’re in another “Observation” phase and adjusting to yet another room change (our third and final room it appears)
until the next update,
-C
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