Where do I even begin...? Sorry it's been a few days since I've updated. I ended up going to work on Sunday so between getting up at 4:30 in the morning and not getting back until 10pm I was a little tired, lol. Things around here seem to be going along as planned. The best news is we are hoping to go home on Wednesday!!!! We can't wait!
Riley started receiving the new Lovenox shots(blood thinner) on Saturday. We had to give her a higher dose for treatment therapy for a few days to make sure all the clots she had were gone. This worked great and her blood draw for levels last night showed her therapeutic range was great. So, now we had the all clear to stop her shots for the 24hrs that are necessary before she can have surgery. She is scheduled to have her broviac reinserted tomorrow at 9:30 so that is great news. Then we wait 12hrs and she can re-start her Lovenox injections but at a lower prophylactic dose. She will have to continue these twice a day for an indefinite period of time. That is what we are being told at least... The hematologist most likely wont return but we are supposed to follow up with them within a few weeks of discharge. So, we will see what that brings and I believe we will see Cardiology in 6 wks to follow up on the stent placement. It does kind of suck that we will now go from seeing cardio every 6mo. to a year to now having a lot closer follow ups. Not to mention adding the hematologist to our list of people we have to visit regularly. As if we didn't already have enough specialists! She now has over 15 specialists that CLOSELY follow her. Sigggghhhhh... I guess we'd be a lot worse off without them though.
I am still hoping they will get into contact with her geneticist tomorrow and he will stop by and see her. He hasn't been able to see her since December due to him being on medical leave and then we had to miss our appt. a few weeks ago. We shall see... I am also hoping if all goes according to our schedule we I might be able to get them to let me "sneak" Riley out to her Nephrology appt. that is at 2:30 tomorrow. Since it's only a few blocks I can walk over and it will save me a whole trip over here and besides she needs to have her follow up anyway.
We did get one piece of good news today. Our favorite nurse of Riley's in the whole wide world is ready to come off of maternity leave. She will be returning to us on June 25th. Thank god we missed her! And the best part is she works every weekend! No more worries about me being able to work. We'll just pretend there is no bad news and continue living in denial as I am now!
Please say a prayer that this line tomorrow goes in easily and without incidence. The Cardiac IR the other day told us Riley's right subclavian vein has officially become to narrow from scarring and he was unable to use it. So we just need nothing to happens to hinder what we have left. God knows too we have to get this line in in order to get the femoral out and also because Riley can't take anymore of these peripheral labs/ She has bruises and needle marks covering her entire body. Sh freaks out anytime two nurses walk in the room together since she assumes they are here for her. I'm getting tired. I'll try to update tomorrow after her surgery. Thank you to everyone who have sent up all the many thoughts and prayers for my baby!