Primary Children's Medical Center 8-31-11

Talk about disappointment...I've waited ALL morning for the Cardiology team to stop in and talk to me, I started to feel like it was either a really good thing they were taking their time, I thought maybe they were writing prescriptions out and getting ready for release, or that it was a really bad thing, I wondered if maybe they were thinking today wasn't the day...I was hopeful though...bad idea, I totally got my hopes dashed. And I cried, really cried for the first time in 2 weeks. I'm exhausted, I need a break. Miss K is a really good baby but she has moments just like any other baby where she just cries for no apparent reason and holding her and rocking and bouncing and changing her diaper and offering the binky, not feeding her because it's been less than an hour, don't work and she just screams and wiggles and is VERY hard to keep a hold of because she really is a wormy, squirmy baby. This doesn't bother me at home because I usually have help, or at least I know at the end of the day I'll have help, when Daddy is home. I can walk away and lock myself in my room, or go for a walk outside and Daddy will take care of the baby for a few minutes. I can't do that here. The nurses have 4 patients each and on this floor they ask that one adult family member stick around 24/7 to take care of the child, especially infants because the nurses don't have time to take care of them like they need. So I have to deal with everything...alone. I don't get any relief of any kind, I occasionally get to sneak away for one meal a day, but even then I'm gone less than 10 minutes and I almost always come back to find her screaming frantically in her room and nobody doing anything about it. It's frustrating :o(.

So the nurse came in about 1/2 hour ago and gave me the bad news, she had talked to the Doctors and they told her Miss K is not leaving today :o(. I hadn't seen the Doctors yet, I'm sure they were afraid of being the ones to break the bad news since they promised me yesterday that we were leaving here today, they left it up to the nurse to break the bad news. The cardiology team finally came in about 15 minutes after I was told the news, I think they were waiting for me to get it all out and be calm and collected again when they came in, I'm sure by now they are afraid of my reactions, none of them want to deal with my crying, lol!

Yesterday Miss K had a few SVT episodes, the team isn't concerned too much about that but they were concerned about the early morning one that lasted almost an hour before she came out of it on her own, after me blowing in her face multiple times without success and being iced multiple times without success. They didn't like that we had to get out the Adenosine and even think about using it. I agree, I would hate to leave here and end up coming right back, but it doesn't mean I'm taking the news that we have to stay well at all! The Cardiology team is upping her dose of both the Amiodarone and Propanolol and watching her to make sure it works. When I said "so we're going home tomorrow instead", they wouldn't confirm or deny it, they just said that there wasn't much time between giving her her new doses and tomorrow. In other words I think they mean they'll send her home Friday. They said they want to see her doing really great before they release her. I like being safe rather than sorry but I'm more than ready to just take what I'm getting and go home now.

It's so frustrating to hear that there were somewhere around 7 total SVT babies admitted here the week Miss K came in. It's even more frustrating to hear that a good amount of them went home within 24-48 hours all healthy and ready to go. It's yet even more frustrating to hear that the baby boy Miss K's age that was so very bad off while in SVT, whose SVT was threatening his life (unlike Miss K who's done awesome with it), went through all the same medications and doses as Miss K did except they pushed through them quickly and in less than 48 hours, getting him under control and officially out of SVT within 3 days, he left here 2 or 3 days ago having not gone into SVT in over 72 hours. I hate knowing that because the Doctors have taken their time with Miss K, they've taken over 2 weeks to get her on the right medications and doses and she's still going into SVT occasionally. Now we're doing another dose change...I can only pray this is the last one and we'll really be done for good in the next day or so.

I want to go home. I want to hold both my babies together. I want to be together as a family. I want to be in our routine and enjoying our days together. I want to watch my baby girl grow and change in her own home. I want to put clothes on her! Nothing we bought for her first few weeks home is going to fit by the time we get back, she's surely outgrown most of her cute little outfits she only wore once or not at all. I want to watch my baby boy grown and change, I've missed SO much these past few weeks, he's a very different child than he was when all this began, he's learned so many new things and changed so much without me. I just want all this to be over.

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