Monday, July 09, 2007
The Weekend-WRETCHED Current mood: angry
Macy Jane finally went to a room Friday afternoon on the the 7th floor. She arrived in the room at 5:30pm. The ICU nurse did not make sure that she was hooked up to an oxygen monitor before she left and the floor nurse wasn't even the one who took report on MJ, so she knew nothing about her. Macy Jane started choking/gagging/spitting up bile and for two and a half hours I tried to get the nurse to come in there and set up a suction device so that I could suck the throwup and mucous out of her mouth and put her NGT to suction like it was supposed to be and to put a freaking oxygen monitor on my child since THAT IS THE REASON that we are here now, her oxygen being low etc etc. Finally at 7:30 I pushed the button for the nurse and screamed that I need a nurse in here NOW. I wasn't trying to be ugly but MJ was in the middle of having an episode and I needed some help and had NOTHING to suction her with. I was pissed off and I am still pissed off about it. Anyways, shift change had occured and the new nurse came in and within 5 minutes I had all of the things that should have been in her room and on her at 5:30. The day nurse came in at 7:40 and said to me "I just wanted to let you know that I did not get the order to put her NGT to suction until 7:10"---kind of like saying she couldn't do anything until she had the order, she had the order for suction but it didn't clarify if it was continuous or intermittent so she had to wait for that. Bull crap. Anyone with half of a brain cell would hook it up to at least intermittent suction while waiting and if continuous was ordered then it is very easy to go back in and change it. The whole purpose of having the NGT to suction was to keep MJ's stomach empty because she is refluxing so bad and is at a huge risk for aspiration. Anyways, I wanted to say to her, well it is 7:40 and you are just now in here to put her NGT to suction as ordered, what have you been doing the last 30 minutes????? Also, noone checked the placement of her feeding tube.
So, on Saturday, MJ started to look worse and they did a chest x-ray and sure enough she had aspirated and this time it showed up on the x-ray. I am really upset with this hospital right now because they are doing more harm to my child than good. She is in worse shape today than the day we walked in this door. Had she been taken care of those first two hours that she was here on the floor I firmly believe that she wouldn't have aspirated. If I would have had the suction that I asked for at least 3-4 times, I could have sucked the stuff out of MJs throat. What kind of nurse does not check an oxygen saturation for over 2 hours on a child that just came from ICU and was on the ventilator???? A stupid one.
So, on to Saturday. They needed to start an IV on MJ because the one in her foot didn't work anymore. They called Pedi-Flight to do it because MJ doesn't have good veins. I was in the shower and the nurse knocked on the door saying that they needed to shave MJs head to put an IV in. Okay, look at my profile picture.....do you see all of that hair??? I was SO upset, but I knew she needed it. They shaved the left side of her head completely bald. They got the IV and started some antibiotics on her. Then, we noticed that her feeding tube was almost completely out of her nose. The nurse pulled it out because it was choking MJ. The doctors said that it couldn't be put in at the bedside and that it had to be put in in radiology. I tried to tell them that in the ICU they just put it in there and the nurse did it and if they wanted, I would do it. Oh no can't do that. So, they did not feed MJ all weekend and she still isn't being fed. She has lost weight big time. She has IV fluids to keep from being dehydrated. She was supposed to go to the cath lab at 8am to get a more permanent IV access in her chest and to get her feeding tube put in under x-ray. Now they are saying it is 3pm. They are going to start her on something called TPN and it can only go in a central line iv access. The TPN will fatten her up even if she doesn't have her feeding tube in.
Now, what about the G-tube and the Nissen Fundoplication? We still don't even know if the surgeon will do it. I do not understand what is going on with that sitiuation. She needs both and most people know that, so when is it going to be done?? I am talking to some people today and tomorrow about what has been going on with nurses etc. because their actions are unacceptable. Did I mention that one nurse in the ICU turned off MJs alarm that goes off when her oxygen levels drop too low? Yep! He turned them off for over 4 hours & I don't know how long they were off because I wasn't in there the whole day. Thank the Lord I was in the room and watching her, but if I have to do that then put me on the freaking payroll and let me be paid to do their job. I am still waiting on his manager to come and talk to me because like I said, that is unacceptable for an ICU nurse to do. He was putting MJ's life at risk!
Anyways, I know I am full of gripes today. I had a really bad weekend and to top it off Steve wasn't here, he had to work. Thankfully my mom was able to stay and help me. There is one good thing.....MJ smiles a lot now. I don't see how she wants to with all that has happened to her, but when you talk to her she smiles. She now has this thing where she will scoot and scoot until she is on her right side. She will not sleep unless she is in that position. I love it
Well, I need to get back upstairs. Hope everyone is doing well. Hopefully we will have answers soon. Still no word from California, yet. One doc said that Dr. Hanley was reviewing MJs case today and another one came in today and said it was going to be Wednesday, so who knows. I sure don't. I just have to take it one day at a time.
Thanks for the prayers & keep them coming, we need them!