Cautious Optimism

Hi Everyone,

Natalia remains well stabilized and has pretty much been completely out since last update. She appears to be more comfortable with the ventilator and tubes than she was when first transitioning into the ICU. For the first few days it seemed her body’s natural inclination was to continue trying to breathe for itself but is now in synch with the rhythm of the pump and at better ease in general which is reassuring to all.

She’s also more comfortable with the suctioning process. Despite being on a ventilator, her lungs continue to fill with fluid of course which needs to be manually suctioned out on a regular basis. To do this a hose device is pushed down the main tube down into her lungs, you push down on a button to create a vacuum seal and then pull the hose out which brings the fluid out like a siphon into a suction tube much like the one used at your dentist’s office. It was a painful process to witness at first (Martin, her dad Chris and I have actually performed it on several occasions as well) but her body doesn’t react to it in as tense a way as she first did (much like witnessing someone vomiting, but without any sound. [If too much information, my apologies, but as you know, Natalia doesn’t like things sugar coated]).

There have been a couple of things on the medical team’s radar. There has been some bleeding from the lungs that was coming up into the tubes so some bronchoscopies (bronchoscope is a flexible tubular instrument with camera and additional ability to suction lungs) were performed which weren’t able to identify a source, leading them to suspect that it isn’t chronic bleeding (which is a good thing) and likely a result of the intrusive nature of the ventilator.

She had a mild fever yesterday which indicated her body may be fighting an infection. It has since come down a bit which is encouraging.

Also of some concern is that her CO2 levels are higher than doctors would like. For those that may not know, sustained high levels of carbon dioxide essentially poisons the human body and can lead to cell damage, including cells in the brain (that’s worse case scenario, which this isn’t). This is not something that doctors have said explicitly to us, more a process of deduction, but if C02 levels don’t improve it appears to be raising the likelihood of moving to Novalung option which, as mentioned in previous post, is a transplant bridge until other option(s) become available.

There is tremendous upside with the Novalung. It’s actually a technological marvel that keeps people alive until organs become available and Dr. Keshavjee is a pioneer with it. In many ways it would be far better than where Natalia’s at with the ventilator because it’s far less intrusive, would enable the tubes to be removed from her lungs and mouth – it could even provide opportunity to eat and speak and move if she doesn’t have to be as sedated.

The downside is that blood thinners are required to reduce likelihood of blood clots on the Novalung which can be problematic A) if the bleeding in her lungs is more significant than suspected and B) for time when organs come and transplant comes and they need to operate. Also, the body’s natural reaction to the Novalung which is essentially an external organ is to create antibodies against it which has potential to increase chances of organ rejection when lungs or lobes are received. I don’t know what the odds are, my understanding is they are remote, but all factors under consideration and part of decision making process.

On the living donor front, Natalia's brother, mom, dad and aunt have all been confirmed as B+ bloodtypes which is very good, and Martin is O+ which as mentioned before is a bloodtype that can work with others. Efforts are being made for the screening process to move forward in an expeditious manner, but understandably takes time. On a related note, we were actually contacted by a good samaritan who was so moved by Natalia's story that he wanted to be considered as a potential living donor and actually donate one of his own lobes. It's against hospital policy for members of the public to come forward for something like this, which makes sense, but it's testament to how much Natalia's story has affected people. The messages of support keep flowing in. As always, and again on behalf on Natalia and family, thank you.

So the wait continues. With optimism...cautious as it may be. We’ll of course continue to keep you posted as her journey unfolds and decisions are made. All of the above said, and all of the above aside, the best headline in the near future will of course be “LUNGS ARE ON THE WAY!” and the last 6.5 days will likely be something Natalia won’t even remember.

Myles Slocombe