After my last post Elizabeths temperature continued to rise to 104. They gave tylenol hoping it would get it down and also gave more morphine and versed which she still stayed awake through and continued to be upset. Her heart rate was between 215 and 223 for over 3 hours, which is not good but even worse for a child with pulmonary hypertension. The did cultures on blood, urine, and her trach site to check for infections but those will take a few days to see if they grow anything. They did start her on antibiotics just in case. After hours of her struggling and not being able to get her heart rate down and still fighting through the morphine/versed they decided to start a drip of versed and fentanyl. She continued to keep her heart rate elevate around 200-209 and her oxygen saturations began to drop, she kept going into the 80's and started looking a little blue. They had to suction her trach alot to get some of the "gunk" that is being created from all the irritation of having something in her thorat since she cant cough it up. At one point they couldnt get the suction down her throat and had to bag her and work for a little while to get the gunk out. So they finally decided it was in her best interst to paralyze her and keep her sedated in hopes that it would relax/calm her and she would be able to lower her heart rate and the ventilator would be able to do more of the work for her. Of course all of this happened between the hours of 11pm - 4am this morning. Needless to say Matt and I were beyond scared and a little irritated that we kept telling them something was wrong and it seemed to take her declining more and more for someone to realize we knew what we were talking about!!!! Her temp did finally come down and after being paralyzed/sedate her heart rate did finally come down to an acceptable level (again after 4 hours at or over 200!). She is doing ok this morning, but has had some issues with her oxygen saturations dropping.
At this point they think she had another pulmonary hypertension crisis, we are thinking she just got too upset for too long and it overworked her heart (thats OUR thinking). I am upset and mad that I felt the trach would help her and now it seems to have set her back but maybe Im wrong and this is just a bump in the road.
The plan today is to keep her paralyzed/sedated on the vent and consult with Cardiology to see if they want to do anything more or just give her time to rest and see how things go. They plan to start a pick line so that she wont have to keep getting stuck for IVs and blood draws since she continually has problems with her veins being accessible . (After over a month in the hospital and NUMEROUS IV's and sticks who woulda thought all your veins would be bad??)
PLEASE keep her in your thoughts and prayers, last night was up there on the list of scariest experiences we have had with her and we hope they can get this figured out and help her!