great song.

Happy not so super Monday. That game was terrible last night but the halftime show was !!!! Our decor for the game yesterday pictured above. 

This weekend was an eventful one for Mom, we got her out and about, moving and grooving. Friday she celebrated Maria’s bridal shower in an intimate gathering where everyone had a beautiful time and the cake was amazing. (Obviously dessert is mom’s fav part-sorry Maria) Sunday we did the Benito bowl at Ryan and I’s house while all the boys were on shift. Mom joined us for snacks and laughs with the sister gang.

Today, Monday, we woke up at 7am to bundle up in the freezing weather, literally 9 degrees, to chug over to Morristown to get yet ANOTHER lung tap. Friday (2/6) we saw the pulmonologist for a follow up from the last lung tap which was only on the 29th of January. They were able to fit us in this morning to tap her again. 

The past two visits have been extremely hard for her to handle the pain. We are guessing scar tissue during catheter insertion and a combination of lidocaine just having minimal to zero effect on her; but either way, no bueno.

Got through it, like she always does. Cusp of 2 Liters removed, again. 

We discussed the question of: When does the shortness of breath just become something we deal with over the pain of the lung tap? Attempting to push the taps further apart. This is a double edged sword. Do we leave the fluid in the lung and let the shortness of breath, constant stopping, coughing, unable to talk quickly without having to pause so that we don’t have this recurring weekly cycle of pain that we purposely cause?

Mom’s choice; always. I don’t think there is a right answer besides finding a liver immediately.

Some people have asked about liver donation and how does it work? I have even had a few volunteers to donate their liver to Mom. Very kind, but you would have to be dead. So sorry, folks. Unfortunately mom’s liver is past the point where she could use a piece of a liver from a donor. This lady here is seeking an A+ whole liver.

Recently, at an appointment at Mt.Sinai, her doctor told us that it may sound morbid but if we have “any friends or family that engage in reckless activity that you can tell them they can directly donate their liver to Mom” She then went on to say that if involved in a fatal accident or anything like that, Mt.Sinai accepts “Direct Donation,” as long as you make the responders aware before you pass. Hey, it sounds cruel but you ain’t takin’ it with you when you go, so send it on over here.

With direct donation, as long as you have the same blood type, they take it, screen it, and she is all set. With the dark humor our entire family has, I immediately sent a message out letting everyone know if they have type A+ blood and they do any dumb shit that Mt.Sinai is waiting for their liver for Mom.

A few of my friends went as far as to write this information on a note in their car, god forbid. That really got to me. Everyone just cares so much.

After the tap, I took Mom home to rest, this knocks the wind out of her, especially after her wild weekend of snacks. We’re still out here crossing our fingers, everyday.

We appreciate the support, the reading of the blog, and all the love. You guys are the best.

Next up on the docket, we’re gonna talk about HOW WE GOT HERE! A big bad meanie named: Alpha-1 Antitrypsin

yap soon

xoxo

nell