Wednesday, May 16, 2012

Who Knew Hospitals Had Roller Coasters?

California Adventure: California Screamin
Let’s get this out there: I do not like roller coasters.  I will go on them to push myself outside of my comfort zone but I am terrified during the ride.  Afterwards, I may say I was glad I pushed myself but can’t actually recall if I’ve said I’ve enjoyed the experience.  (My denial defense mechanism is working just fine!).  

During my 50th birthday celebration at Disneyland and California Adventure, I went on “California Screamin.” 

I was so frightened I couldn’t talk once the ride was over.  I’m not kidding.  I couldn’t scream, couldn’t talk and could barely move to exit the coaster car. 

Give me some ice cream and let me sit down before I faint. 

This week has felt like a roller coaster: Sunday, Robert seemed to be doing better and everyone thought the antibiotics were doing their job.  Monday morning, one of the residents was visiting Robert and going through the usual questions and chest exam.  Robert was working on his word search puzzle while the doctor and I talked about how Robert seemed to be improving. 

Without moving his pen toward the paper, Robert asked me to help him write the number 10 next to a word (Robert likes to find the hidden words then count how many letters are in each word.) 

I was very confused because this is something Robert does several times a day.

You can write the number, I tell him.

Staring intently at the paper with pen in hand for several long moments, making no motion toward the paper, Robert says, “I’m trying to but it seems I can’t.” 

The bottom dropped out of my stomach.

No matter what I said to him to coax his hand to move the pen to paper, he couldn’t do it. 

From the shocked look on my face, I’m sure I didn’t need to tell the doctor that was not typical behavior.   Between this and the extreme sleepiness, it seemed there might be something besides the infection going on. The doctor assured me they would keep Robert in the hospital to figure out what was wrong. 

I’ve sort of lost track of days but since then, an EEG was done, another chest x-ray was taken, more blood was drawn and the neurology team was consulted.   There wasn’t a change in the EEG results from the last one taken about a year ago.  The blood cultures weren’t growing any bacteria and the chest x-ray showed about the same amount of fuzziness as the first one. 

Some good signs.

Finally, Robert was more like himself today.  He can’t move around as well as normal but he’s been lying in a hospital bed since Friday so his legs are very weak.  A physical therapist has walked with him for the last couple of days and I’m hopeful he’ll get back to his baseline soon. 

The doctors now think it just took a while for the antibiotics to fight the infection Robert had and that the infection had impacted his cognitive function since, after a couple of brain surgeries, medications and a lifetime of seizures he has very little “cognitive reserves” to deal with an infection. This does make sense to me and I know how Robert's cognitive and physical abilities have been compromised in the past due to an infection.

The great news is Robert may be released tomorrow.  My worry is the infection will return as soon as he finishes off the antibiotics.  I’ve already warned New Home they will have to be hyper-vigilant in order to monitor Robert for any signs of an infection returning.  I’m going to ask the doctor to write an order for them to check his blood pressure and temperature a few times each day for the next few weeks so we can quickly catch any signs of a return of the infection (because New Home, of course, has to have a doctor tell them to do these things).

I’m focusing on the good news and keeping my mind off of the roller coaster.  I’m ready to be done with this ride for a while and imagine Robert and my family is too. 

Maybe it's time for some ice cream and a little rest. 


LaineD said...

My dear friend,

I have to say I've never been fond of Roller Coasters either. I'm remember the days when both Jessica and I were in hospital (her as a extreme preemie and me with the reaction to the steroids) and we didn't know from day to day what was going to hit next! I learned not to use my pet phrase at the time 'at least it can't get any worse' because all to frequently it could or at least it would be off at another unexpected tangent.

You and Robert are certainly being tested... WOW! But you are up to the test and more. With such a caring advocate, Robert is in good hands, that his Doctor responds to your unspoken reaction. Robert's Doctor will support you in your dealing with New Home and if Robert needs more antibiotics after this set he will get them.

You are both inspirations!

Know that we will hold you both in our hearts, thoughts and prayers until you and he are fully recovered from this ordeal. Thank you for sharing it so that others might understand.

Love Laine and family

Trish Hughes Kreis said...

Laine, Your thoughts and words of encouragement are always a source of inspiration to me. I love the hospital he goes to (it's a teaching hospital so I think it's important they understand the family is not to be dismissed). Doing my own teaching . . .! Haha. Hugs, Laine!