June 22, 2012

Robertson's ups and downs...

Yesterday was a much much better day and....dare I say, there were moments that were a little boring!  I cherish the slow boring times now....

Robertson did very well on the prednisone and IVIG treatment last night and his eye is less droopy.  The neurologist said that some of his strength was coming back into his lower legs and feet....just still needs more strength returning to his thighs and core of his body.  Still has double vision and eyes turn in and can't trace a finger from side to side much or up and down.

I did have one scary moment during the day.  The intensivist (the PICU doctor) came in and asked me if I knew about the MRI findings.  My heart immediately began to race and my stomach went cold.  I asked him what he meant...that I had been told that it was normal.  But, I did know that the MRI results were being put in front of yet another radiologist and hadn't heard anything from that yet.  The doctor asked in surprise that my neurologist didn't tell me when he came in?  I again stated, "No!"  Then he began to back peddle a little and said that he wasn't sure that it was meaningful but that some finding had been noted on the MRI results and that he would check on it and then he left. 

ACK!  Seriously, if you aren't sure yet....*please* do NOT tell me!  I know some parents might feel differently but I just want to be told once there is a known problem.  It is way too scary and stressful.  He did call me later and told me that he had spoken with the radiologist who did not think that the MRI was abnormal and the finding was not significant.  Geesh!

But overall, Robertson mostly watched movies, played an interactive computer game, and happily goofed around with his very fun and loved uncle who came to visit (he said "this is the best part of my day!")....OH!  And, he got to EAT!  Between the MRI procedure and the concern for his swallow, he had not eaten for two days...and he was miserable.

 The speech therapist watched his swallow and decided that he could go on a soft food diet.  He ate every bit of the food that she brought to work with him like applesauce, banana baby food, and saltine crackers.  Then his lunch came and he ate nearly every bit of it.  They wanted to take it from him since his dinner was coming but he guarded it like a dog guards his bowl.  So, he happily had continuous food in front of him until well into the evening.

His dad came and his sister Amelia and he got all sorts of activities and toys from his grandparents.  He was a happy boy!


We started the treatment again and I expected it to be just like before.  The benadryl would make him sleepy and the rest of the IVIG would be done while he slept.

Oh my goodness..... that is NOT what happened.   He ended up with an excruciating headache and was in more pain than I have ever seen him.  He cried out and writhed and reached for me....and I got into his hospital bed and rubbed his head and held him close and stroked his forehead and nothing worked to ease the pain.

The nurse got him some Tylenol but I knew that wasn't likely to touch that kind of pain.  He cried and cried and thrashed until I really got upset and asked the nurse to get the doctor...it was ridiculous!  I held him close and prayed and prayed and the nurse came back in and said that the doctor ordered for the IVIG meds to be cut in half and go in slower over a longer time.  They also agreed to give him motrin. 

He finally snuggled in close to me and the crying out got softer and softer until he could fall asleep.  It is wee hours of the morning now and I can't begin to say how much I hope that he sleeps through the rest of the treatment which will last another few hours. 

Onward to three more days (at least) of this treatment.....

1 comment:

  1. So glad to hear of his improvement Prayers continuing


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