Name that kid

I was thinking maybe we should have a little contest...Name that kid...

You guess what kid is in the hospital this week and...if you guess the hospital then you get bonus points!  I'm not sure what you win yet but I'll think it over.

Tonight, I am blogging from Madison Memorial with Shelbie this week!  It's a full house up here tonight but props to the ER doc and our amazing nurse for getting down to business and getting her some relief. 



Her heart rate spiked to 135 and stayed there and her blood pressure is 130/93 so something is up.  She's been running her usual fever too but probably unrelated.  So, here I sit.  She is finally sleeping and things are calming down.

Yesterday, we had a pretty good day.  Everyone was in good spirits and it was as if nothing new was happening.  Today, it's been the complete opposite.  Sam went to work this morning as usual and one of the kids he works with came up to him and said, "Hey man, are you okay? You don't look okay, I think something is wrong with you."  That's a weird thing for a 20 year old kid to say but the truth is Sam doesn't look good and he has been laying down all afternoon and hardly ate dinner.

He is almost done with his treatment for C-diff but he said he feels like nothing has changed.  His blood pressure is back up to really high and his eyes are still a pale yellow.  This week is the week we report back to the Nephrologist what his blood pressure readings have been and he will determine the course we should go in treating Sam's kidneys and blood pressure.  Before I do that, I'm going to have our family doc do some blood work so I can see what his liver enzymes, kidney and blood counts are doing.  I'm guessing his bilirubin is back up.

Our Oncology nurse called late this afternoon to get Shelbie's next round of testing scheduled but I was helping a neighbor and missed the call and by the time I had a chance to call back, it was after 5.

At work tonight, I found out that I will likely be laid off at the end of the month, though nothing is official quite yet.  That's kind of what happens when the people you work for have all sorts of kids of their own who need summer jobs.  I didn't like hearing that one bit. 

I've become friends with the HR person and her husband is dying of Multiple Myeloma.  She had a meeting with the cancer doctors today and they will be telling him the news in two weeks after the last round of radiation, that they have exhausted any treatments that will stop the cancer and then Hospice will start.  I wanted to be emotionally available to her but I find that I'm having a hard time regulating my own emotions and feelings.  I realized as I listened to her that I am completely unprepared for this next phase of our chronic journey.  Even coming to the hospital, a normally 'easy' thing for me to do, filled me with all sorts of anxiety.  We don't really have a good explanation for what is happening to Shelbie yet, until they sort out a few more things.

On the short drive to the ER, I couldn't help but feel a little scared...Is this from the medication?  Are the granulomas in her brain causing problems?  Is this a complex partial seizure?  Does she have an underlying infection? I've always had a pretty good handle on things and an expectation of how it goes but I feel lost in our changing terrain.  Honestly, I have felt lost for the past two years.  Everything is getting so much more complicated than I ever imagined.

Well, labs just came back and she definitely has a bacterial infection so blood cultures, chest x rays, Rocefin and IV Narcotics for the stiff neck and pain...Please don't let this be some kind of meningitis or encephalitis.  Ugh.  It's almost midnight. We will head home in a couple of hours and I think I will start her plasma transfusion tonight and get some fresh immunity in her sooner than in two days when we are scheduled to do it. These are the nighmarish scenarios in an immune compromised person.  I guess we will handle what comes.

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