Two very unusual symptoms on Friday morning were reported by Madi: Heart was racing and very low oxygen level, but she elected to go the surgical center (versus ER across the street) for the port placement. Upon arrival she spoke to a nurse immediately. Long story short and with physician stakeholders concurrence, the port was surgically placed ~1:30 PM without incident. Home by 3 and just settling in, she had red some foamy spit come up within minutes. We called the surgical center that placed the port. Unrelated to placement procedure, they said "get her to ER". They didn't speculate but her symptoms implied pulmonary embolism. Madi said "something is wrong"... Could see it in her eyes.
The ER physicians ruled out an embolism with a CT. We're used to seeing images and reports of the chaos going on in her chest... new to this ER doctor. You should have seen his face... his thought-bubble projected extreme concern and 'how much do they know'. We knew, but could see in his eyes and by his demeanor that he didn't know we knew. That said...
Given no blood has ever bubbled/been coughed up prior and his interpretation of the CT, the ER physician advised transporting Madison to the UCLA trauma center by ambulance: she arrived about midnight Friday night. Speculation with input from physicians:
Next steps: assuming no more blood is coughed up, she may be discharged Sunday. Assumption: start IV immunotherapy or the recommended chemo treatment on Monday as planned. While it's all mapped out, it's subject to change.
Notes:
In closing: our minds were swimming in the some terrifying what-if's scenarios for the last 36 hours: interpreting the conversations with numerous physicians we spoke with... the disease may have progressed suddenly, the last remaining engine was ablaze, (threads below) and the wing may be catching on fire. The copilot was instructed to call a "mayday", thinking we may end up in the Hudson.
Or... a one time oddity, cause TBD. That's the hope! The engine catching the wing on fire doesn't appear to lay our lay patient or her parents to be the case: physicians as well and now, A lot of what-if scenarios by physicians over the last 36 hours is a lot to process. Madi's spirits seem very good all things considered. Given the rarity of her disease and complexity of her case, she has the best-of-the-best focused on every aspect of leveling this plane (analogy below). Step one, put the engine fire out. Scheduled start, Monday the 31st... updates to follow.
Love,
The Joneses
(psssst... don't go dark: yesterday I heard her giving someone a bunch of lip on the phone as I reentered her hospital room :-)
The ER physicians ruled out an embolism with a CT. We're used to seeing images and reports of the chaos going on in her chest... new to this ER doctor. You should have seen his face... his thought-bubble projected extreme concern and 'how much do they know'. We knew, but could see in his eyes and by his demeanor that he didn't know we knew. That said...
Given no blood has ever bubbled/been coughed up prior and his interpretation of the CT, the ER physician advised transporting Madison to the UCLA trauma center by ambulance: she arrived about midnight Friday night. Speculation with input from physicians:
- An artery to her lung may have been compromised, which can be an extremely dangerous scenario with a high-risk surgery if/as warranted
- One time anomaly/trauma, her 'rogue lung' oddly and suddenly bled, then stopped.
- IF a significant amount of blood suddenly does flow, emergency surgery would follow. We were told late today that the 'suspect' artery is not a major one, so IF that's the root of the two hour span of the blood (about a teaspoon five time gradually less red over a two hour period), it would NOT be life threatening.
Next steps: assuming no more blood is coughed up, she may be discharged Sunday. Assumption: start IV immunotherapy or the recommended chemo treatment on Monday as planned. While it's all mapped out, it's subject to change.
Notes:
- Madison's surgeon in 2014 at MGH probably has performed more chordoma surgeries than any other physician in the country, maybe the planet. He's IS the man. In May/June, he left MGH and is now the director of the Chordoma/Sarcoma center at UCLA.
- Madi's new expert chordoma oncology team (the 'dream team') has affiliations with UCLA. We spoke to her new oncologist last night. Asked if he knows Fran Hornicek, he lit up and responded "yes, very well", adding "everyone in the chordoma world knows Fran".
- In both scenarios... Karma, or a blessing... we personally don't believe in coincidence
In closing: our minds were swimming in the some terrifying what-if's scenarios for the last 36 hours: interpreting the conversations with numerous physicians we spoke with... the disease may have progressed suddenly, the last remaining engine was ablaze, (threads below) and the wing may be catching on fire. The copilot was instructed to call a "mayday", thinking we may end up in the Hudson.
Or... a one time oddity, cause TBD. That's the hope! The engine catching the wing on fire doesn't appear to lay our lay patient or her parents to be the case: physicians as well and now, A lot of what-if scenarios by physicians over the last 36 hours is a lot to process. Madi's spirits seem very good all things considered. Given the rarity of her disease and complexity of her case, she has the best-of-the-best focused on every aspect of leveling this plane (analogy below). Step one, put the engine fire out. Scheduled start, Monday the 31st... updates to follow.
Love,
The Joneses
(psssst... don't go dark: yesterday I heard her giving someone a bunch of lip on the phone as I reentered her hospital room :-)
