Still Miles to Go

On Wednesday, after 25 days in patient at MGH, I broke out! But I did not leave empty-handed. They sent me home with a nifty new pump and GJ tube to help me get nutrition, 5-6 new medications, and gram-positive staph (as well as another bug I can’t recall) UTI.

The different fluids, formulas, and supplements that were able to get me home: Peptamen 1.5, TPN, Potassium, Magnesium, and Saline

I was so happy to get out of there that I didn’t even care they were sending me home with a REALLY nasty UTI. And – as luck would have it – we got a call from Dr. Sims’ office literally one hour after we left. My biopsy was back. Brilliant. Unfortunately, they wouldn’t tell us anything over the phone, but they were able to squeeze me in for an appointment in two weeks. (Usually it takes months to get in with her, so we’re pretty happy we don’t have to wait too long.)

Now that I’m home, I want to reiterate how much we appreciated everyone who called, sent cards, and visited. I don’t think I could have kept my spirits so high without you all. Especially our amazing visitors: Stef, Karen, Sarah G., Liz, Nana, Beepa, Ralph, Will, Sasha, Katie, Elena, Corynne, Missi, Erin, Crystal, Tapas, Sophie, Jonah, Rebecca, John, Sarah F., Aly, Rachael, Tali, and Kevin. Sorry if we missed anyone! And a huge thanks to everyone who sent cards. They helped keep the room festive during the holidays.

My Card Corner - Thanks for all the love! 🙂

Now I’m just readjusting to my freedom. I’m experiencing a bit of culture shock, coupled with how much more complicated my life has become with new medical devices and medications. But we’re hoping that with the better nutrition, we can better keep the mito from progressing. While I was inpatient, Dr. Sims added a few new supplements to my mito cocktail and we’re hoping that those will decrease the episodes of dystonia, seizures, cyclic vomiting, etc. and increase my quality of life. It has certainly been a tough year for us (and for so many of our dear friends), but we’ll keep fighting and looking to a better future. Thank you, once again, to everyone who has stood by us on this crazy journey. It wouldn’t be possible without you!

The beautiful view from our hospital room - Floor 22 of MGH