I ran around like a fool this morning, trying to get things done. I even went to Walmart and bought a fax machine. It is all Brendan’s fault, so much paperwork and faxing. Good thing we still have a landline.
I even went back to the doctor and got another round of antibiotics and an inhaler to help knock out this dumb cough that won’t go away.
I went to the office and started another term of medical leave of absence. Hopefully by the time this is up, Brendan will be home and stable and I can continue to help the family income. The current situation is not conducive to accomplishing any work.

By the time I got to the hospital, I had missed seeing Brendan get his EEG. I also missed the neurologist who must leave early on Fridays. The only thing the nurse knew was that the first report said “unremarkable”. Brendan was having a day much like the last few but we have made a discovery.

I could be way off base, but his nurse and I agree that he seems to be having an adverse reaction to his Sildenafil. Brendan was having a super happy afternoon, smiling so big I thought he was going to burst forth with a hearty laugh in spite of his trach. Then the nurse gave him this med at 3PM. Within 15 minutes, he started to get rosy red cheeks that soon led to a full flushed face.
An hour after the med he was not smiling anymore, he was fidgeting and not making eye contact. Within 2hrs, he was doing the full head turning, eyes rolled back, and crying. We had seen the pattern a bit yesterday and tried to prevent a full melt down by giving him tylenol once we noticed the flushed face. I was able to rock him to sleep tonight, and get him comfortable until he had his normal scheduled ativan which helped knock him out.

The doctor confirmed that the med could cause the flush and that it also gives some people severe vascular headaches. And, going back in record, the first day that I noticed the harsh head turning behavior was the day they increased his dose of this medication.

They are giving it to him to help dilate his pulmonary bed so that blood will flow in to his lungs more easily from his head. There was already a question about whether it was doing anything to help him, so they are going to wean it off and see if these meltdowns continue. He gets the drug at 9am , 3pm, and 9pm so it correlates to several behaviors I have noticed. It just does not explain the 5am issues. We will see what happens.

Smily Brendan starting to get flushed

So glad there is a rocking chair in his room now

Good night little Brendan

With all of my errands, Trevor got an entire day with Daddy! He made sure to make Daddy feel loved. Two minutes prior to a work phone call, Trevor dropped an epic poop. I guess the bananas that he got to try this morning with breakfast helped! There was no greenbean face today, he likes his bananas and oatmeal!

He was lawn supervisor today, sitting in the shade and watching Daddy pick up dog poop.

He is such a hard working good helper!

Who is imitating whom?