Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, March 23, 2017

Take Two

One year ago in April, Angela had surgery to repair her liver. It was a procedure that had never been attempted before, but it worked! We couldn't pull her gtube yet though because the rule is she has to make it through flu season without any pneumonias, then we can pull it. Yippee! We made a final follow-up appointment with her liver surgeon for the end of April, with plans to pull her gtube May 1st 2017. Angela wanted to plan a party for it.

Then the last week of February, everything went south. Angela was wheezy and her nebulizer treatments and inhalers were't cutting it. She went to her nephew's birthday party, was gone just a few hours and came home a mess. I took her into the ER with what I suspected was aspiration pneumonia, and I was right.


Her swallow had been doing so well! I became suspicious that something was up with her liver so started watching for some of the more subtle signs. I didn't need to watch very long. Within a few days Angela became very irritable. She complained of a headache. She became "flat" with no emotion and no ambition to do anything. She didn't even want to leave the house or go to school. Not wanting to go to school almost qualifies her for an ambulance ride. LOL Looking back at the very subtle signs she shows, we think her ammonia had been slowly climbing for about 6 weeks. I knew....

On March 3rd Dean had his right knee replaced. That same day Angela started declining. I had to leave him in surgery and run to her school. I ran her over to the University of Minnesota Discovery Clinic to get her bloodwork done.

 She was at 51. 20-50 is considered normal, so she wasn't super high, but she was acting like hers was higher. She was acting the way she used to act when she was in the 80's. Very odd. but enough to make a noticeable difference in her behavior and mood, which are our only indicators. That, and as you can see in the picture, she looked terrible. A few days later we checked her again and she was in the high 60's. Still not even close to extreme (she's been in the 280's before) I think maybe her body finally got used to functioning within normal levels so that little jump really made a difference for her.

We started her back on the ammonia scavenger drug Xifaxin (it is actually an antibiotic which, in very high doses, acts as a scavenger drug) until we could we could assess what was happening inside that liver of hers. She had an ultrasound done and I could see on the screen that jump graft was bigger than it had been in August.

Angela's team had a big meeting to go over everything and today she and I met with her surgeon to discuss their findings. The jump graft had, indeed, opened more than what it was in August. We are setting a surgery date to make another attempt to close it off. This will be done by the Interventional Radiologist.

In this procedure they will use a large needed to go though the liver into the portal vein, then guide a wire through to where the jump graft is and attempt to close it off. She will stay in the hospital overnight for observation, then come home and be back to herself!

However, if this attempt doesn't work, she will need an open procedure done. They will re-open her abdomen like they did last time.

Needless to say, we're hoping that doesn't big surgery become necessary. That was a very rough recovery for Angela.

Angela knows there is a surgery coming up, and in true Angela form she's excited for that. "What? I get an I.V? YAY!" She graduates from her transition program this spring so we're praying 1) the simple needle procedure will work and 2) we can get it scheduled without her missing any of the pre-graduation festivities at her school.

So, that's the Angela update for now!

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