These past two days have been days of pure confusion. No one seems to know what is actually going on. Every single doctor or nurse that enters our room seems to have a different story to tell us or we just get flat out incorrect information altogether and have to have them double check.
Yesterday after the mix up in the blood I.D number, I had them check Addison's blood type because the nurse was mentioning how pale Addison looked and that she might need blood. She came back and said O+, the same blood type as me. I was confused because in the NICU they had told us that she wasn't the same blood type as me and that is was one of the reasons she got such bad jaundice. Greg then researched online and he read that and AB+ (which is Greg's bloodtype) could not possibly have an O child. He then of course made a joke asking if I had anything I would like to tell him (typical Greg). So right before we headed out for lunch, I had her check again because Greg and I were both sure that she wasn't O. We didn't want Addison getting the wrong blood if she ended up needing some. The nurse seemed skeptical, but went and double checked. She came back apologizing profusely, she had made an error. Addison was in fact B+.
So before we headed home yesterday for the night, we talked to the staff that would be watching over Addison. We were talking to the head of the night nurses, we were discussing the possibility of them feeding her over night. So I went in to my whole spiel about having to be careful because she spits up out her nose instead of her mouth, due to her having a soft cleft palate. She replied saying that they could not feed her then, until she had a swallow study done. She went on to say how thank goodness I told her because she could aspirate because her nose is blocked by the oxygen tube.
So this morning when we arrive, I instantly ask the first nurse who enters the room about the swallow study and if Addison is able to eat yet. She said she didn't need a swallow study until right before Addison is discharged and that speech therapy would just come and see if she is swallowing okay and feed her. So I bring up the fact that she spits up our her nose, and she was pretty much like... so what?? I then tell her what the other nurse had said about aspirating and she said that was not true. So I am a little annoyed about getting a differing information, and annoyed that all they were doing was having her see a speech therapist. Addison has seen so many speech therapist and we even see one weekly, and more specifically she had seen this exact one in the NICU and this speech therapist had told us that Addison had no issues, and did NOT have a soft cleft palate. After that nurse leaves our day nurse comes in, so I ask her about when the speech therapist is coming so she can eat. She tells me that Addison has to have a swallow study first before eating. So then we are completely confused.
Around 3:30 PM, we noticed Addison's blood pressure has been rising and is well over the range they like to see. Our nurse kept telling us it was fine, that its just when she is too active. Then one of her surgeons peeks his head in and just quickly tells us that all of Addison's numbers look good, and that everything is fine. He then asks about her eating, we tell him she hasn't been allowed to eat yet. He then asked us if she normally eats anything at home. I thought I misheard him, since I am known to have awful hearing. So I had him repeat himself. Yep, he really was asking if she ate at home. UMM, yes she eats. I am pretty sure a child can't survive without eating. He walks away and literally a minute later a Cardio nurse stops by and tells us her numbers aren't looking so good and that we will have to start oral blood pressure medicine. So again leaves us completely confused.
Greg and I have learned to just keep asking things over and over, someone is bound to give us the right answer eventually. We just don't believe anything until we see it.
In other news, They took out the tube that was draining the area around the heart. They then took X-rays to make sure nothing was wrong. It turns out that when they took out the tube they got an air bubble in Addison, near her left lung. It make breathing really uncomfortable. They then said she couldn't eat until they were sure if it would go away or not. We would have to wait to find out at 4 PM. If it didn't get smaller they would have to put her under and put another tube in to get it out. At 4 PM they did another X-ray and it showed that it was going away on its own!
It is now 5 PM and poor Addison is just now eating for the first time since surgery, and all she is eating is pedialite. She is starving. We have been trying to keep her happy with some sweeties and her paci, not really working.
Oh yeah and she has yet to have a swallow study and has yet to get medicine for her blood pressure. I know everyone is doing their best, but it is frustrating.
I miss the NICU, they were so on top of their game. The PICU can't seem to all get on the same page.