Sunday, September 23, 2007
Sunday Current mood: annoyed
To say that I am highly pissed off would be an understatement. However, I must continue to be thankful that MJ is here with us and as far as her surgery goes, she is doing well, still doing better than most kids at this point post-op, according to her doctors.
However, the care that she is receiving is absolutely atrocious.......um I probably misspelled that, but you get my point. Saturday, a new doc was on, Dr. Wright. She was all ancy to extubate Macy Jane Saturday morning. According to all of the numbers and her breathing she was more than ready, has been for a while now. However, she was wanting to keep MJ partially sedated and in a comfortable place so that she would be easy to extubate without her getting fussy and causing herself to have a bronchospasm, or in plain terms think of it as an asthma attack. Well, the nurse had followed orders and gave MJ some chloral hydrate to calm her, and then given her her scheduled does of Ativan and Methadone about 2 minutes before they extubated her. Needless to say Macy Jane was pretty much zonked. The respiratory therapist gave her a breathing treatment right before they extubated her to help her not have an asthma attack after being extubated.
Well, they took the tube out and MJ did fine for the first 2 minutes then the doctor said that she wasn't breathing deep enough and ordered the nurse to get some versed, fentanyl, and vercuronium (a paralyzer) ready. Then she listened to MJ's lungs and said that she sounded like she was going to start wheezing in a few minutes. She then did a blood gas and reintubated her because her CO2 was slightly elevated, but her PO2 was fine.
I left the room at that point because I was furious. My first question was....how can you say that a child sounds like she is going to wheeze in a few minutes? To my understanding, you are either wheezing and tight, or you are not. There is no grey area of you might be about to. Secondly, Macy Jane was WAY TOO SEDATED to breathe on her own. She did great for the first 2 minutes, until all of the drugs that had been given 2 minutes before extubation kicked in. You could tell by looking at her because she was not opening her eyes or anything. She was drugged looking as I have been calling it.
Well, I walked back in the room and listened to the doctor say well you know she sounded like she was going to wheeze and her CO2 was slightly elevated and she just didn't do well after a couple of minutes. I looked at her and said was it all of that stuff or is it possible that she was OVERSEDATED??????? She looked at me and said well yeah in hindsight she was too sedated to be expected to be extubated. Then she proceeded to tell me about how babies that have had the Unifocalization surgery typically need to be in a comfortable state when they are extubated so that they do not broncospasm, etc and that she could either not give MJ anything to calm her or give her something and that she realized that with MJ it was obvious that she wasn't one that needed to be "comfortable". NO FREAKING JOKE SHERLOCK! I proceeded to tell her that every time MJ has been extubated in the past, she has done well, never having to be reintubated. The difference this time? MJ was drugged before taking the tube out. That is the ONLY difference. I pretty much said those words to her because I was hot hot hot. She proceeded to tell me that the meds that MJ was given should not supress her drive to breath because that was not a side effect. Excuse me? I am a nurse and I may work with adults and not children, but common sense comes in to play. If you overdose on ANYTHING what happens? You eventually stop breathing or have shallow respirations because you are so sleepy. MJ was breathing, she just wasn't breathing deep enough. SHE WAS ASLEEP! You can't expect a child to breathe deeply when they are full of meds that are meant to make her sleep. I told her that I was a nurse and that I know that if you are given enough antianxiety meds and pain meds, your breathing is not going to be the same, even if they are not known to cause respiratory depression. She then kept babbling on about this and that and I just started crying and I think she got my point and said she was going to go check on something and would get back to me. I haven't talked to her since then and do not wish to.
Yes, everyone makes mistakes and hindsight is always 20/20, but why is it so hard for them to listen to me and Steve and even my mom?! We have been there for MJ since day 1 and we know what works and what doesn't, but because we do not have MD behind our name our opinion is worthless? I am sick and tired of people not listening to us and because of it MJ is having to suffer needless results of their pridefulness.
So, I spent the night last night at MJs bedside just reading a book and talking to her nurse, who pretty much agreed with what I was saying. This morning I went to the RMH and slept for a while then stayed around there just lounging around and watching tv for the first time in a long time. I enjoyed it and needed the break before I went postal and killed someone or something. If there had been a cat in the road this morning I would have tried my hardest to kill it.....haha (sorry Sarah ;) The plan now is to take MJ off of the Methadone and Ativan tonight and start her on Diprivan. They don't use Diprivan much in children because of the effects on the liver, but they will only use it for a few hours and should be safe to use short term. Diprivan is a fast acting drug and once they turn it off, she should be good and awake within 5 minutes. The plan is to hopefully extubate her in the morning/afternoon tomorrow and see how she does. Please pray that she will do ok so that we can get out of the ICU in a few days and up to the regular room, which means we will be home about a week later if everything goes smoothly.
MJ has also been running a low grade fever. They did blood cultures, but so far have not grown anything, which is an answer to prayer. She is on antibiotics prophylactically. Please pray that the fever will go away and that any infection would be removed from her body.
She has lost a lot of weight, I am not sure how much but she is a lot smaller. Still as beautiful as ever though with those big blue eyes and that red hair!
Another thing that upset me is that the nurse yesterday put in an NG tube on Macy! I wasn't there or I would have stopped it. My mom told him before he did it that MJ has had a Nissen done and that she has a g-tube and he proceeded to tell her that if it wasn't right he could just remove it, no harm done and that he thought he heard the docs saying that she would need one so he went ahead and put one in. After he put it in he removed it because sure enough he wasn't supposed to put one in her because she has a g-tube. Turns out, there wasn't an order for one! I am seriously considering talking to the CVICU manager because that is just wrong! Even if the doctor ordered it, he should have assessed his patient enough to know that she has a g-tube that could be connected to suction without having to put MJ through the tube insertion. Which by the way, mom said that she did not even move when he put it in, if that tells you how sedated she is on methadone and ativan!!!! If you even come at her with oxygen for her nose she squirms and arches her back.
Anyways, lots going on here. Just taking it one day and one prayer at a time. God is probably tired of hearing from me by now, lol. Not really.
Tonight I went to dinner with mom and Steve at the Olive Garden. We split an entree and it was soo yummy. It felt good to get out for a bit. I am back at the hospital now and am going to go back and see MJ and sit with her tonight. Steve will be coming up in the morning and I will go to the room and sleep for a bit. I just do not want to be there when they extubate her again, I can't handle that emotionally right now. I know my limits and I am there and just need a little break from watching her suffer through some stuff. I know that it hurts me way more than it hurts her, if it even hurts her at all, but to remain sane I am going to start taking a bit more breaks from the hospital.
Thanks for the prayers, I think it is quite obvious that we still need them 24/7/365. Much love to you all!!
Bethany