Arla Rietveld

First post: Mar 3, 2019 Latest post: Mar 25, 2019
I took Arla  to the ER in Pella on Tuesday, February 26, because she had been sick on Sunday and Monday and just wasn't feeling better.  I was concerned that she was very weak, dehydrated, and was a little confused.  She could answer all the questions the doctors and nurses asked, even giving dates of surgeries from the 1990's.  They decided to admit her because I was telling them about her confusion and since she lives alone, they want to monitor her. 
She got settled in to an inpatient room late Tuesday night and was ready for sleep.

Wednesday, February 27, I went to to hospital before school to bring her some clothes and puzzle books to keep her occupied until they released her, which I assumed would be later in the day.  When I arrived, her room was empty.  I tracked down a nurse and she told me they had to move her to a room across from the nurse's station because she started pulling out her IVs and her heart rate was very high (Afib).  They were moving her to ICU (which turned out to be the nurse's station I found when trying to locate her) when a room was ready because of the Atrial fibrillation.  She could still answer questions correctly, but was also saying things that didn't make sense.

When she got settled into her room in ICU, she was alert and talking quite a bit, having a conversation with someone she thought was there, but wasn't.  Yet, if I talked to her or asked her questions, she responded appropriately.  Her sodium and potassium were quite low, so it seemed like that was the issue causing the confusion and when those levels got to where they should be, she would regain some clarity.  They came in to do a chest x-ray and then a heart ultrasound.  those confirmed that she had Afib, and according to Dr. Canedy, she had had it for at least a year.

On Wednesday afternoon, the nurses told me the doctor wanted to do a CT scan, but they had to wait until she had settled down.  Mom was very agitated, kept trying to pull out her IVs, pulled off her pulse/ox meter a couple times, moving her arms around, and just generally unsettled.  One nurse finally gave her some towels to fold, and that kept her happy and occupied for quite a while.  She also was happy to have some puzzle books.  She kept up a continual conversation;  often there wasn't really anyone there, but she seemed to think there was.  Her sodium and potassium levels continued to be low, even with IV drips to bring it up. 

Wednesday evening she was less "with it" but would still answer questions correctly.  We could have conversations that made sense, but she was also busy counting out loud as she was doing something with her hands.  When asked what she was doing, she said she was counting meat and cheese - she was seeing herself at work at HyVee.  

Thursday morning, February 28, she was less physically agitated, but it was obvious she was worse than the day before.  She was dozing a lot more, but was aware enough to comment on what the doctor and nurses were saying.   her speech was much more slurred than it had been, which I reported to the nurses.  Her sodium levels were still low and that was what they were trying to bring up.  Thursday afternoon she had a CT, which showed no mass or bleeding, but seemed to show some swelling in the brain.  An hour later, she was taken down for an MRI.  The doctor came up at 4:15 Thursday and said the MRI showed she had had a stroke, and they would be moving her to a stroke rehab center as soon as they found a bed.  

The doctor left and I could see Mom was upset, even though her eyes were closed.  I went to her and she asked, "So what's the plan for me?"  I explained she had had a stroke, we would be moving to Des Moines when they found a bed.   

Mercy's stroke unit had a bed for her and were finally ready for her around 8 pm, so she was transported by ambulance around 8:15 Thursday night.  Her speech had gotten better, but she was saying things that made less sense.  

When Tom and I arrived at Mercy, the stroke expert was in with her.  He noted that she had stroke symptoms such as only looking to the right, and not to the left.  He had me stand on her left and call her, she answered, but didn't look.  I asked if she could look at me, and she said, "Yes, I can." but didn't turn her head at all.  This doctor said there were 4 things going on: stroke, Afib, fever, and low sodium.  He was concerned about the fever (which had just started Thursday afternoon).  He had the Iowa Heart doctors come in that night and they assessed her and were planning to do tests.  

Friday morning, March 1, Tom and I arrived about 8 am.  the nurse reported that her stroke score had gone up in the night, that she had some facial twitching and they thought she might be having a seizure.  

The neurologist came in (by that time Chad had also arrived) around 9 and said he was not convinced she had had a stroke.  By looking at the MRI, he thought it was likely encephalitis, but would do a spinal tap to make sure.  He made it clear that we needed to act quickly to find out what was going on.  meanwhile, Mom was virtually unresponsive.  She did nod twice when I asked her questions (once to tell her her swimming friends were concerned and praying for her) and once when I said, "This is really confusing, isn't it?"

We spoke with doctors from infectious diseases, critical care, neurology and cardiology. The critical care doc told us it was likely to get worse before it gets better, and that she may end up on life support, but that they will figure it out.  This all happened very quickly - within an hour or so.  They were waiting on a bed in neuro/trauma ICU.  finally around 1 pm they were able to move her down to that unit.  She was not responding to voices or commands at that time, her Afib and blood pressure continued to be high and sodium continued to be low.  The critical care doc allowed us in around 4 pm, after talking to us around 2 to say he was going to put in a breathing tube because while she didn't need it yet, he wanted to do it in a controlled situation rather than have an emergency situation and he expected she would need it.  He said the test of spinal fluid did confirm HSV encephalitis, but they were waiting on the DNA test of that fluid to be 100% certain.  He told us some people never wake up when they have this disease and told us we are looking at weeks before we really know what progress there will be.  Needless to say, we were discouraged, exhausted, and unsure of what to do other than to pray. 

Chad, Tom, and I went home around 5.  I called in to check on her around 10 pm Friday night and was told she was still not following commands, had a twitch in her left arm, and her blood pressure was still high.  She had opened her eyes spontaneously, which the nurse said was positive.

Saturday morning, March 2, Chad and Laura arrived at 9 and were told by Dr. Wilcox (critical care doc) that she was alert and following commands!  Chad said she seemed to know they were there and acknowledged them.  We arrived around 10 and she looked at me when I came in too.  Throughout the day she was awake some and would nod her head or shake it to answer yes or no questions.  

At 2:30, Dr. Hughes, the neurologist came in  and was shocked to see her alert and responding to commands.  he said that was not what he was expecting and he was planning to give us information to read on HSV encephalitis, which we could still read if we want, but didn't need to.  He was clear that she is not out of the woods and said we are looking at days and weeks, not hours and minutes, to see improvements and know how she will recover.  he said the DNA test did confirm she has HSV encephalitis and had absolutely not had a stroke.  

We left on Friday evening not having much hope, but Saturday morning, after many prayers, we believe Arla will beat this disease.  

Please keep praying!

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