Gaines is doing well this morning. He was at 31% oxygen when I visited this morning but last night he held at 28% oxygen for several hours. I'd say that's improvement. While I was there this morning they put him at 27% and he was doing well with it. I don't expect him to stay there all day but if he could hold for an hour or two it would at least be a step in the right direction.
Right now I'm happy with 30 and below but I don't get concerned unless he's 33 or above. Its amazing how 3 days ago I was so excited over 33% and today it seems like not good enough. I just pray that he will keep slowly coming down. I've been waiting a long time to see the 20s again.
I'm afraid that I caused a little bit of a scene today at the hospital. Last week Gaines' main doctor told me that if I was ever there and didn't see his CPAP bubbling to let my nurse know. He explained that if it wasn't bubbling, he wasn't getting the pressure that the CPAP should provide. Basically CPAP with no bubbling is no different from a nasal cannula. Knowing all of this now I've been watching really closely for the bubbling lately and there have been many times that he has not been.
Now I know that it is extremely hard to keep the CPAP just right so that it creates a good seal against his nose and allows for the pressure in his lungs, but I just felt like lately it was almost rare that he was actually bubbling. Before I continue I want to be clear that Gaines' nurses are great and that I 100% understand how hard it is for them to keep it just right. Just the slightest tilt of his head can mess up his mask and there are also times where he just needs to rest and not be bothered. However, I have gotten to the point where I don't have the time to mess around anymore.
I feel like its time to really buckle down and make sure that we are doing everything possible to get him better. In my mind I see this giant digital clock that is counting down the weeks, days, hours, minutes, second and milliseconds until I have to leave so I'm sure I'm a little stressed and hyper-sensitive about this. However, I know that I (and Beau) am his #1 advocate and if I don't speak up, who will?
So...back to my story. One of the doctors came by Gaines bed while I was there and I explained my frustrations to her. She of course understood (doctors push the constant bubbling but aren't the ones that have to actually maintain it minute to minute) and told me that she'd take care of it. She talked to the charge nurse and then Gaines' nurse and a couple of others while I was there. I could tell our nurse took offense to being chastised and it turned into a big ordeal that ended with me crying and being consoled by yet another nurse. I didn't mean to stir up trouble, I just want whats best for Gaines.
Anyway, this doctor was going to talk to the two attendings about it and make sure that everyone was aware of how important it is for Gaines and any baby on CPAP to be bubbling all the time. I believe Gaines is a tougher case as he has gotten older and his able now to maneuver around and mess his mask up more often.
I just hope I haven't made the nurses mad at me. They've all been great this whole time. I think I made up with today's nurse but I'm afraid there is going to be a note in our chart over this. Oh well...I do think Gaines will be bubbling a lot more in the days to come.
In other news, one of my oldest friends from home should be here this afternoon to visit. She's in the area and wanted to stop by for a while so that should be fun.
I am cracking up right now listening to Beau get Reed in trouble. He normally takes naps and goes to bed great in this new big boy version of a bed that he's got going right now (an air mattress on the floor). For some reason today he's in there playing with whatever he can turn into a toy. Beau's been in there three times now and I just think its funny. I keep hearing..."Reed, get back in that bed. We aren't playing right now." The last time he came back out with a tupperware container that Reed came up with some how. He is so funny lately. I have to try so hard sometimes not to laugh when we have to get him in trouble.
I better run. This is way too long already.
Love to all,
Brittany
9 comments:
DO NOT feel bad if you got the nurses in trouble. Like you said, you are your baby's biggest advocate. My little boy was born on April 27 @ 37w6d. You would think that wouldn't make a difference but for Jack, it did. For some reason, his pancreas was overproducing and he had a VERY difficult time regulating his sugars...at one point they bottomed out at 14! Not only that but they found a very very small bleed in the left germinal matrix of his brain which has already started to correct itself. However, Jack did end up spending 18 days in the NICU here at King's Daughters in Norfolk, VA. The first weekend he was there, I noticed that his heartrate was getting very high (in the 180s-190s) and at one point hit over 200. I voiced my concerns to the nurses who are also AWESOME, and was told that it was because he was upset because of his miserable diaper rash. Well, that Monday while my husband was with him while I was at my OB appointment, Jack went into SVT (supra ventricular tachychardia) on 3 separate occasions. They actually had to stop his heart twice to reset it. While consulting with the cardiologist, it was revealed to me that he had had a couple of other SVT episodes over the weekend while I wasn't there THAT I WAS NEVER TOLD ABOUT. To say I went ballistic would be putting it mildly. I learned then and there that nobody was going to fight for my baby like I would no matter how qualified they were.
If you don't like something that is being done then say something. That's your job as a Mommy.
Sherri Woodie (shall3@cox.net)
Norfolk, VA
There's a Seinfeld about stealing your own chart to erase a bad comment....Elaine tried to steal her chart, but was caught:)
Anyway...
I would have done the same thing.
YOU are paying THEM to do their respective jobs. In a sense, you are their customer. (I realize there are some major differences) If a CPAP machine is supposed to be bubbling, then they need to make it work. Especially, when you've been a model patient and parent of a patient.
I can't make it any more clear than the 2 above me just did. You did the right thing. I'd tell them again if it's not bubbling but hopefully it won't come to that.
YOU are his number 1 advocate. We absolutely LOVED our NICU nurses. In fact, we are still friends with some of them 6 months later. But they are human and most have to take care of at least one other baby....
I was blessed with being able to be at the hospital 8+ hours every day as an extra pair of eye solely devoted on our Bubeaner. And you are right, it takes very little for these frisky babies to get in trouble or pull something out. Wait until he goes for the NG tube. =) Raise as big a stink as you need to get the best care for Gaines. Trust me, the good nurses understand your frustration as care and love for your baby.
And congratulations to Gaines! Drinking from the bottle with a CPAP is a big job!
First of all- how could anyone be mad at you- you're precious! Secondly, and most importantly- you are a Mama, and a Mama is like a Mama Bear- fierce and in charge- don't mess with them!!!! Keep being observant and being involved- Gaines will be a better baby for that!!We love you!
All I can say is good job! It doesn't matter if they are doctors or nurses, we as parents still have to make sure they are doing their job. They are human and are gonna make mistakes, we have to make sure it is not on our kids that the mistakes are made. Even when we were in the CVCU with Dylon, we wrote down all the med's and the times he was suppose to get them. Don't feel guilty about this, I would've done the same thing. You are a wonderful mom! Hang in there!
OK everyone else already said what I was going to say about speaking up about the bubbling....but can I just say that I am cracking up at the fact that you and Beau "get Reed in trouble" ? Isn't he getting himself in trouble?? So funny! :) Have a great day!
Gaines is your #1 priority. If the nurses aren't doing what they are supposed to be doing then the deserve to be corrected. Love all of your reed stories...he seems like such a sweet boy!
Girl, if it's supposed to bubble, it's supposed to bubble. Simple as that. Good job!! Here, here!
Oh, and the nap thing will only get worse...and funnier.
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