The when the urea cycle- which is the process of breaking down protein in the body and removing the waste products into the kidneys - isn't working right, the chemicals glutamate and ammonia build in the brain, which can cause Hepatic Encephalopathy, or HE.
Since Angela's gtube was started on her formula on October 8th, her brain has been swimming in a toxic bath. She displays nearly all of the symptoms of HE. I've marked them in red.
mild confusion
short attention span
forgetfulness
mood swings
personality changes
inappropriate behavior
difficultly doing basic math
change in sleep patterns
decrease in fine motor skills
"musty" or "sweet" smelling breath
slurred speech
marked confusion
severe anxiety or fearfulness
disorientation regarding time and place
extreme sleepiness
slowed or sluggish movement
shaking of hands and arms
speech that is difficult to understand
We don't know if we will get our girl back or how long that will take. The doctors say it can be weeks or months. She has a nearly non-existent frustration tolerance, which makes her aggressive and prone to lashing out in the form of throwing things or hitting. She cries because she is confused by what is happening and she doesn't like how she feels. As her body recovers she has very little energy. She can have one "big" activity in the morning (going to the teen room, doing an art project with a volunteer, 20 minutes of music therapy) before she starts to shut down. The dark mood takes over and she really can't function well. It takes a lot of convincing that she needs a "rest time". Finally the nurses or I will shut everything down, turning off lights and removing attention from volunteers and favorite nurses. After pouting for a few minutes she will curl herself up and sleep.
We just want our smiley, bubbly girl back.
Since Angela's gtube was started on her formula on October 8th, her brain has been swimming in a toxic bath. She displays nearly all of the symptoms of HE. I've marked them in red.
mild confusion
short attention span
forgetfulness
mood swings
personality changes
inappropriate behavior
difficultly doing basic math
change in sleep patterns
decrease in fine motor skills
"musty" or "sweet" smelling breath
slurred speech
marked confusion
severe anxiety or fearfulness
disorientation regarding time and place
extreme sleepiness
slowed or sluggish movement
shaking of hands and arms
speech that is difficult to understand
We don't know if we will get our girl back or how long that will take. The doctors say it can be weeks or months. She has a nearly non-existent frustration tolerance, which makes her aggressive and prone to lashing out in the form of throwing things or hitting. She cries because she is confused by what is happening and she doesn't like how she feels. As her body recovers she has very little energy. She can have one "big" activity in the morning (going to the teen room, doing an art project with a volunteer, 20 minutes of music therapy) before she starts to shut down. The dark mood takes over and she really can't function well. It takes a lot of convincing that she needs a "rest time". Finally the nurses or I will shut everything down, turning off lights and removing attention from volunteers and favorite nurses. After pouting for a few minutes she will curl herself up and sleep.
We just want our smiley, bubbly girl back.
4 comments:
Hi Leah,
We continue to miss Angela at school! I am so sorry you all are going through this. I will continue to pray for sweet Angela!
- Jenny Bergstedt
Wow, you must feel like your on the roller coaster ride from HELL! I read the link you gave on the Zebra wears a Tutu post, which was a bout as clear as mud. Meaning if your like me with no medical background it was very hard to understand much at all(but glad you gave it). I know you will get your head around it as you are great at explaining medical stuff to us here.Was not all surprised that you worked out what was going on was impart connected to her gtube feeding. Praying you have an easy week this week, as in no scares and that you see the Angela you know and love coming back too you. Also that you feel the Farthers peace and comfort and know we are holding you up in prayer. Hugs Relle
Oh Precious Father in Heaven we are on our knees for Angela and her family. PLEASE Lord God PLEASE heal Angela. In Your Precious Name we continue to pray and hold steadfast. Amen
Leah, I haven't followed your blog in a couple years, so was surprised when I re-found you this morning ... I didn't know about Audrey's adoption (congratulations!!), still can't figure out who Amos is, but as usual, sounds like your family is a blessing to him! It's awesome to see Axel, Asher, and Abel growing & progressing so well (I followed from when Axel came home through Abel). But most importantly right now, my heart is heavy for all you're going through with Angela. I am absolutely praying and will watch for updates. Thankful for so many strong minds in the medical community that's taking care of her right now, and praying for their continued wisdom and for her body to heal and her spunk to be renewed! Much love and many prayers, Julie
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