Woke up Will this morning for church, and he said, "I am so tired." Hmmm...well so am I (that is what I get for going to Richmond at o dark 30 to see Caty run the Monument 10K, paint the bathroom, and do all the grocery shopping...all in one day!), but I have this sinking feeling we aren't talking about the same kind of tired. Sure enough, he finally got up and was waiting for me, lying outside my door with the bp cuff and stethoscope which is how every child greets their mother in the morning!
So, the family headed south to church while Will and I headed south to MCV and our friends at the pediatric ER. Angela, the same nurse as two weeks ago, was our assigned nurse, and was able to convince the resident of what we needed since the on- call neurologist was our least favorite and by far the least helpful. The blood work was drawn, the IV fluids were hung, and the long wait began.
Last time, Will's diastolic bp (the bottom number) dropped extremely low, so when we saw a similar trend, Angela got suction and a non-rebreather mask ready. Really, this is just not comforting. It is comforting that they are prepared, it is not comforting that they need to prepare...
To give you the short version...Will did drop, but the respiratory assistance was not needed. The nurses and I did brainstorm about what might be causing such dramatic issues. So, for now, we are checking his glucose during infusions to see if he is becoming hypoglycemic, and we are ordering a pulse oximeter to see how low his oxygen saturations fall in conjunction with falling diastolic blood pressures. In other words, how is he perfusing? He gets mentally fuzzy, so is his brain lacking oxygen?
What we do know is that Will's baseline has dropped. We struggle to get his bp over 100/50. That is a drop from the 120/76 that we consistently had just two months ago. We know he is dropping even further during infusions. This is either worsening autonomic dysfunction, which is really not good news, or this is ... something else not working right which is again, really not good news.