SO thankful today for great nurses, who listen to us and care about Elizabeth!! Some of the Doctors were adament about doing a venous stick to draw blood since her PICC line was not working. We voiced concern and our unwillingness to allow her to be stuck, since in the past it has taken way too many tries to get blood/IVs. It just didnt make sense to me to stick her 5-6-7-8 times to draw blood and then stick her again to place the new PICC line since none of her labs were critical. Our nurse last night and this morning both agreed with me, and felt the same (they didnt want to stick her). SOO, Elizabeth got her new PICC line today, and they were able to just postpone drawing her labs until it was in place. She also got her Synagsis vaccination today (prevents RSV) and they decreased her fentanayl drip last night. And decreases one of her vent settings. And they changed her formula to something that will hopefully digest easier, and allow her feedings to be increased. SO she had a VERY eventful day. She had a little bit of an episode tonight where her heart rate got up to 195 and she was working very hard to breath, but thankfully her saturations didnt drop below 90. Not sure what caused it, but thinking maybe all of the above things that were done have left her sore and tired, and she just needed a little extra medicine to deal with it. She has continued to have the sparatic fevers, but so far none of the cultures are growing anything (well other than our good friend MRSA, which she is colonized too, so it will always be around). So the thinking is that it may just be a virus that she has, but that test hasnt came back yet either. So wait and see, at least she is "stable" so I cant really complain. I just want to be sure of what the problem is, just in case she gets an offer, she needs to be in the best place possible so she can recover and not cause damage to her new lungs.
She has been on the list for 1 month as of today. And we have been in Texas for almost 2 months. Seems like time goes so slow yet flies by here. This waiting stuff is no fun!! I have never been a patient person and this whole journey has found me at times on the verge of losing my mind. Before I would always wanted to hurry up and get to the next step but I have learned that sometimes I need to step back and just be thankful for how things are now. I keep reminding myself that as long as she is here, and doing ok I need to be happy with the NOW and not wish it away for what is to come. Because we have no idea what the future holds. Hopefully it will be better, but just in case, I need all the time I can get.