Good afternoon,
Ruby had a bit of an up and down night and a rough day yesterday. She is still having these episodes that are bringing her oxygen saturation (SATs) and blood pressure down. Yesterday she had a rough one in the afternoon and after that they weren't able to get her oxygen above 90%. So she has been in the mid to high 80s since then. It isn't an ideal place to be, but we are tolerating it because there really isn't much else to do. So yesterday overall was a stall, if not a bit of a regression, in progress.
Today there is a new plan. Over the past couple days the nurses have noticed that when they empty her stomach (which they do before any procedure, or sometimes just to check) they are finding nearly everything they have put in is still there. The meds to sedate her and keep her from wiggling does slow down the digestive process and it is having a significant effect on her. This means that all her oral meds were, for the most part, not being absorbed. She was getting tylenol (which they stopped a day or two ago), synthroid (which seems to be working, but that's just thyroid hormone) and most importantly her two pulmonary hypertension medications. This means that the meds she has been given for her biggest problem haven't taken effect and that's probably why we haven't seen significant improvements in her lungs (They usually work a lot faster). So maybe considering the drugs haven't been getting through she has just been trying to tell us she needs more help all this time...
Yesterday Dr. Horne mentioned another drug, called prostacyclin, that they could use that is much stronger. The plan was to wait until they did more diagnostic tests on Tuesday or Wednesday to make sure it was warranted. Now they have decided to give the new drug to her. It goes through the IV (not into her stomach) so it will definitely get into her system. There are side effects like thinning her blood and decreasing her blood pressure, but she isn't at risk of bleeding now that her chest is closed and her heart is doing well, and her pressure has room to go down because it's been running high to keep her SATs up. They are getting ready to give her this new medication now and we are hopeful that it will have a positive effect.
They have been able to take off a lot of fluids (over 300ml in the past 24 hours) which is really reducing her swelling, so that is helpful all around. She is also tolerating the reduced fluids well, and that wasn't the case earlier this week.
It's been a hard weekend for us all, but we are hopeful that this will help turn things around. Please be praying that all goes well with this new medication and that we will see progress soon.
