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Thursday, February 27, 2014

What’s up with that…

Jeremy’s favorite phrase of words have become my life, think I’m officially name my life a roller coaster while hanging upside down.  We had our yearly review for nursing, nothing exciting or so I thought it was just his yearly review, nothing has changed for him but our new caseworker wants to cut Jeremy’s nursing, from 12 hours 7 days a week to 8 hours 5 days a week for 60 days and then nothing.  The caseworker called me on January 30 to tell me this, I was waiting for my car to get finished and I argued with her, pleaded with her, cried for her and finally a no-brainer filed an appeal.  I think she just overlooked so much into Jeremy’s care.  I am waiting on our court date and gathering my data. 


Then the very next day, Jeremy crashed and he crashed hard.  I had went to my uncle’s funeral and on the way home received a phone call from my home nurse that Jeremy was vomiting, running fever, chilling.  We did a urinary culture to check the obvious, Cyrus started an antibiotic that Friday but Jeremy was so sick through the weekend, he finally got off the bed on Sunday.  The week before he had a seizure in the bathtub, and the nurse had to lift him out and it took him over 45 minutes to regain his mobility.  Jeremy stayed home most that week because he was so tired, and he was really starting to scare me.  We went to see Cyrus the next Friday, he did some blood work, urine culture all came back good except Jeremy’s thyroid was 4 times lower than what it should be so that would attribute to him being so tired.  He got better and then by Sunday he was back to running a fever, vomiting, a repeat of the week before but Cyrus felt that was viral.  We did a Kidney US and it showed his left kidney is obviously smaller than the right, so.  We know with FG syndrome they can have kidney issues, but Jeremy hasn't, but we just started checking his kidney’s due to bladder issues, so it could be that his left is genetically smaller than the right, the spine curves in that direction could be preventing growth.  Jeremy’s thyroid came down very easily, his urine culture continues to look good and he’s improving with energy.  We will be doing a Uro-dynamics study to check bladder and go from there.  We had an appointment with our Neurologist and he agrees that some of the issues we saw were along the line of seizure activity so we will repeat the EEG.  This was all in the month of February.  

We have had cold winter, more snow, but it's not been too bad.  We are expecting another round of cold, winter precipitation Sunday, Monday and Tuesday.....