Home in Time for Christmas (?)

Hi Everyone,

Natalia’s journey continues to make great progress from the depths of where she was just before her transplant last w/end – she continues to fight, to heal, to improve and get closer and closer to being able to return home; indeed, if all goes well, there is optimism that she will be home in time for Christmas(!).

Natalia’s progress, though steady, hasn’t been without a setback of sorts.....the setback seeming relatively “minor” in the context of recent weeks for Nat and all she has been through. Under more normal circumstances, the setback and even more so the remedy would have seemed a lot more significant.

Natalia had to have a tracheotomy.

Going off the ventilator last week proved too early as mentioned in last update, so for a more phased approach doctors had to give Natalia a “trach” so that when she needs the assistance of a ventilator, it's already connected to her via intubation via her throat (vs. having to re-insert all the tubes through her mouth, down her throat and into her lungs like previous ventilator setup) and all the medical staff have had to do is turn the ventilator back on for instant mechanical ventilation when required. This method has allowed Natalia to breathe by herself for growing periods of time, starting with short periods at first and now, at current stage, she’s pretty much breathing entirely by herself all day and, very soon, all night.

Natalia’s sedation has continued to be reduced. She’s no longer sedated for the purposes of actual sedation, but due to heavy pain medications, is still groggy.

Her awareness of everything is there though.

The only thing that’s preventing her from being able to speak at the present moment is the tracheotomy (which will likely be closed up in the next couple of days). So she’ll be able to start communicating properly very soon.

Swelling is down almost entirely now.

Physiotherapy began a few days ago, and there is optimism that medical staff will be able to get Natalia up and walking for short periods of time as soon as today.

2 out of 5 drainage tubes that are connected to her chest cavity to drain excess fluids and blood have now been removed.

The blood infection is still there but continues to be managed.

Her vitals remain strong. And her white blood cell count which spiked up to 29 late last week has trended down to 13, which suggests that the immunosuppressive drugs are working and preventing her body from rejecting her lungs.

Natalia will be moved out of the ICU in the next couple of days which will be a huge milestone - down to the 7th floor where TGH has a “Step Down Unit" where extensive physiotherapy and rehabilitation will take place as they prepare Natalia for her return home.

So some amazing progress has been and continues to be made.

Martin and family are doing very well and are of course more and more relieved. Their happiness quotient continues to grow as Natalia gets stronger. Due to the rollercoaster ride they’ve been on in recent weeks and the overall ride they’ve been on due to the nature of Cystic Fibrosis, they do have some inherent caution as a preemptive coping mechanism so-to-speak because they do know things can change. They haven’t been jumping up and down with blind elation, but their smiles are defininitely getting wider and wider. And their excitement grows about the very real prospect of Natalia getting home in time for Christmas – something that, as you well know, was beginning to seem like an impossibility up until her new lungs came.

It's all a continual testament to the power and life saving & life changing importance of organ donation. As John stated so well in the last CBC installment, if there is a moral to this story, let that be it. The difference it makes cannot be put into words.

Thank you to everyone for your sustained concern, thoughts, prayers, hope and optimism for Natalia, her family, their journey, and her upcoming return home.

What a day that will be.

And although the walk in the park with Scarlett and Martin may have to be a snowshoe or cross-country ski, that day will come as well.

We’ll continue to keep you updated as Natalia’s victories continue - and it won't be long now before Nat will be online, typing, and sharing her journey again with all of you.

Myles