First off I'd like to acknowledge the fact that I had a good nurse but she wouldn't listen to me at all. She just didn't get the Mommy thing at all, because she was the nurse and what she thought was what mattered in her mind, not what I thought at all. She obviously wasn't a mom, I don't think she was even married.
Miss K started her day acting like she had a tummy ache, being a mom I know what the tummy ache signs are in babies and I'm sure that's what she had. I told the nurse and asked her for something for it, Miss K wasn't eating well because of it and I was getting kind of worried. The nurse just looked at me and said she looked fine to her but she'd ask someone if there was something we could give her. She then proceeded to tell me she really didn't think Miss K needed anything, argh! Needless to say I never saw her put in a request for tummy medicine for her and we never got any. Then Miss K's diapers started to look kind of worrisome to me, I know what a newborn's poop is supposed to look like and Miss K's just didn't look right to me, not mustard colored but rusty colored. I showed the nurse the first diaper, she just took it and weighed it and threw it away, I was so mad! The next diaper was worse so I asked her to look at it again, she looked and shrugged then told me she would ask someone about it. I never saw or heard her ask anyone about the color. The third diaper looked like there was blood in it and it was mucusy, she took this one a little more seriously and charted it then when a Resident happened to come by she asked her about it, describing it as seedy and red, I had to correct her and tell the Doctor she is breastfed and it's supposed to be seedy but not rusty red like it was, the nurse glared at me and said she didn't like the seedy part about it, well I'm sorry but maybe you just haven't paid much attention to breastfed babies! The Resident made the nurse further mad when she agreed with me that if there was no formula in the diet then the seedy part was normal. Her diapers started to look a little better over night but it took a shift change and a new nurse who'd been a mom and a nurse for over 30 years to come in and send in a stool sample to see if there was blood in it. We also got a belly x-ray to make sure everything's moving right. So far the stool sample came back very positive for blood :o(. I haven't heard about the belly x-ray yet. Miss K also had a jerking problem yesterday, I was holding her and her right arm suddenly started jerking uncontrollably, kind of like a large muscle twitch. It went away fast but she did it again a few minutes later and her leg joined it as well. I told the nurse and she just shrugged! When it happened a few more times I happened to catch the nurse while it was happening so she could say she saw it, she still just shrugged her shoulders at me! So I started grabbing Residents and Attendees and pulling them in to ask about it, we finally got a Neurology consult. We're hoping it's just newborn twitching but they've put her on an anit-seizure medication just in case and they're going to do an EEG on her brain to make sure everything is OK. And to top things I noticed a nasty, red sore on Miss K's arm where an IV had been before. The nurse agreed with me and said it didn't look good but she waited a few hours before doing anything, the wound started to look worse and it was after hours for the "wound team" so we couldn't call anyone to come in to look at it anymore. This morning her arm looks much better, the new day nurse put some Neosporin on it and thinks it will be OK. But then we noticed a huge hard, red and angry looking bulge on the top of Miss K's left foot where another previous IV had been. So we're calling in the "wound team" after all to come in and look at that.
The Cardiology team just stopped in and delivered the bad news...they still don't like how often she's going into SVT, which is down to about 10 times in a 24 hour period but only lasting about 30 seconds each time. They are upping her Propanalol dose and holding off on putting her on the oral Amioderone one more day, ARGH! So that's pushed us back yet another day on going home. Looks like Saturday is our nearest projected home date :o(. I'm really getting sick of this, it's so frustrating.
I'm going to take a few minutes to have my cry about yesterday's stress and worries and today's new bad news and stressful worries...more updates as they come!
As for Roo's birthday...it's obviously going to have to happen here in Salt Lake. As of right now I think we're going to shoot for Friday afternoon/evening to party. We're most likely buying a cake instead of home made. And we're trying to decide if we will party here or if we'll go to a nice restaurant, it will depend on how Miss K is doing.
8-23-11 A New Report:After my last update the whole PICU team of Doctors came for rounds and talked about Miss K. They are concerned about the bloody stools, as am I. But they are taking large measures, they don't want to miss anything with her having SVT already. It could be caused by the SVT, not enough blood or too much blood getting to her bowls making them sluff off into her poop :o(. They are going to have us keep going as usual for now but if the blood doesn't go away then they're going to force me to stop feeding her :o(, I'm not sure what this means, I don't know if they're thinking IV fluids only, feeding tube or formula from a bottle. No matter what it is they're thinking I'm praying hard it's not going to happen, I can't stand the thought of them taking away the one thing I can do for my baby. I'm having a hard time with this.
I have complained about the nurse's reaction to my observations yesterday to about every Doctor and nurse who's come to talk to me today. They finally sent the charge nurse in to talk to me, I let her know everything that concerned me yesterday, they said they'd advise and train the nurse better to acknowledge parents concerns immediately, even if it's only to make the parent feel better, which in my case they felt it should have been done because there really was a serious issue going on.
Throughout the day Miss K and I have had a lot of visits from various Doctors and technicians. We've been through 2 belly x-rays, the first one they decided looked normal but had what they thought was poop in the intestine (which is totally fine) but sometimes it's easy to mistake a bad bubble for poop so they sent them in for a second x-ray just barely, we'll find out soon what it says. Her poop is looking much better but they're still keeping an eye on her. They will continue to do periodic belly x-rays until they're satisfied that she's fine. They are encouraged by her good looking poop though. We've also been through an EEG to check her brain waives and see if she's having seizures, this came back mostly normal with a slight "variance" in it that suggests normal newborn brain activity but could be something worrisome :o(. So they're keeping her on the seizure medication called Keppra, they want an MRI but can't do one until she's got her SVT completely under control, which could be a few weeks or months, they aren't in a hurry as long as she's on the Keppra and responding well.
So Miss K now has a team of cardiologists and a team of neurologists working with her as well as a team of regular PICU pediatricians. It's getting confusing as to who's with who and what they all do.
She has been doing pretty good with her SVT today, she's only had 3 or 4 episodes of it, but 2 of them lasted 20-25 minutes and the last one lasted over 30 minutes. Two of them have also worried the nurse into a panic at one point because she had a bad rhythm with it. The 30 minute one took some work to get her out of it, she wouldn't convert back to normal rhythm on her own so I had to blow in her face and make her catch her breath, thankfully this worked and prevented them from using Adenosine pushed through her IV like they've done before. They are going to be watching her more closely now.
It's going to be a long week this week. I feel like Daddy needs to be with Roo more than me but I so want to be selfish and make him come be here, lol! It's so hard being here alone through this.