She's home.

Sorry it took me so long to update the blog. I usually only like to write when I’m feeling good about things, and to be honest, I’ve had a hard time feeling good the past few days.

She was discharged late afternoon on Thursday. One of the residents said that they weren’t going to discharge her until she was back on room air. I almost freaked. But then Harlie’s doc, that knows us well, said that was silly if I could provide the O2 at home. Whew!

I have to tell you, if I had to stay in that “room” another day I think I would have lost it. I can’t begin to tell you how incredibly small it was. Heaven help the patient that’s in there during an emergency. There is absolutely NO room to move around the crib. The only chair (which is also the bed) has to go in front of the suction control – so that meant that I was the only one that could suction her. I seriously can not express how uncomfortable it was to be squished like that. Every time a doc or nurse had to do something it meant a lot of moving things around and squeezing by one another. It was truly awful. I really can’t believe that they expect someone to be able to stay there for any length of time whatsoever. As if it isn’t hard enough just being in the hospital!

I can’t believe how much harder it is to leave her alone in the hospital. Well, really it isn’t an option. Now that she knows when she needs to be suctioned (she tells us and goes and turns on the suction machine and when we’re done, she turns it off) she understands that she is dependant on someone to help her breathe. How could I possibly leave her alone knowing that she is going to cough and want to be suctioned, knowing that there’s no one there to do it? I have to make her suffer enough, I simply can’t do that to her, too!

Anyway, I really hope that the uncomfortableness of the room didn’t influence my decision to take her home. And I guess it’s not exactly completely up to me anyway. There are doctors that have to feel good about it, too.

As far as what was/is wrong with her, it’s really only a guess. They are thinking that it must be some kind of virus/bronchiolitis. There is no apparent evidence of that – her lungs sound normal, no excessive coughing and the x-rays are fine. But she needs extra O2, which is NOT normal. And her heart looked good on the echo, so it can’t be that. They said that the antibiotics that she’s on now should fight whatever it is and that she will get better in a few days and should be able to come off the O2. But Monday will be day 7 on the antibiotics. I just thought that she should be making more progress coming off the O2 by now.

This “sickness” has been a hard one for me to wrap my mind around. She has been WAY sicker and didn’t need O2. I just don’t understand how she can appear to be fine, but still need the O2. It just doesn’t sit well with me. I guess because watching the pulse ox like a hawk, seeing low numbers and willing them to rise just takes me back to worse times. I just feel like we’ve taken a step back and that’s not the direction I want to go. Not to mention it is a complete pain now that she is mobile. Which, I even feel bad saying because I am so thankful she’s mobile and that she doesn’t require more equipment than she does. But I gave her a VERY quick bath and took her off the O2 for just a few minutes and when I hooked her back up she was in the low 60s!!! Now I know that doesn’t mean much to most of you – but that is LOW. Even for Harlie. The typical person has sats close to 100. Her sats are mostly in the 80s, which is fine for her given her heart defects. I think after her next heart surgery, they should improve. Anyway, so the 60s is crazy. And stressful to see, no matter the explanation.

And all this just knocks me back into a reality I don’t want to deal with. Harlie has been doing so great that I forgot how complicated she truly is (medically I mean). And I just don’t like being reminded of that. A simple cold to one child is something that lands her in the hospital. And this sickness alone meant dealing with several different specialists and it is really hard to put all the information together to come to a conclusion. And the person who really has to do that is… ME!

So, between Cooper being sick and trying to keep him out of the hospital, Harlie being sick and trying to keep her home and this horrible economy which has directly affected my family, we have to dig way down to try to find that Christmas spirit this year. Oh, speaking of Christmas – I didn’t do Christmas cards this year. So, when you don’t receive one from me – don’t be offended!

Well, that’s it for now. Thanks for all your well wishes!

Take care,
Christy