cardio update.

hi friends.
we are doing pretty well. after getting home from the hospital Little miss's oxygen saturation actually went up. GO HER! we had a cardiology appointment last friday. the dr told us, "she looks as good as can be give her condition" . I guess I'll take that as a compliment. We were told that because her oxygen levels were so good we could work on weening her off the oxygen. well, since we've been home, we've tried. and to this point, little darla jane doesn't want to ditch it just yet. She'll be doing great, we turn down the oxygen and then she'll drop again. So, for now, we're still rocking the tube!
We also added a new, permanent, med to the list. Enalapril. This will help keep her blood pressure low, and help with her heart function. So that her right ventricle will work as well as it can, for as long as it can. We'll take that! We started on the very lowest dose and will work up as her body can handle it.

but at this thanksgiving time we truly have SO much to be thankful for.

We're home!

Finally we came home, yesterday, after 5 days in the hospital. Isn't it nice that a cold kept her in the hospital just as long as recovering from open heart surgery.
No pictures, seems like life has been crazy since we've gotten home. You would think life wouldn't be so crazy when you aren't able to get out of the house... Bring on the winter!

one more day (maybe)

but at least little miss seems fairly content with being here. Her oxygen saturation levels are sitting a little lower than we would like still so the Drs suggested another day might be a good idea. Her levels are popping up a bit where we would like them, just not staying there. And her nose is still needing to be suctioned but not as much comes out when we do. SO, we know she's turned the corner we will just have to wait and see how long it takes her to walk down the street.
Also, she threw up twice and had some runny poops this morning. (Don't tell her I was posting about that on the internet, we don't want to embarrass her.) But it's just another thing to keep an eye on.
It's just so hard that normal bugs that all kids get, and do ok with take SO much out of her.

...just about there.

When then Dr. came around this morning to check on our little miss her oxygen levels were good and she hadn't needed suction for a while. There was talk of watching her for the day and possibly going home this evening. We after the Dr. left, she needed some serious suctioning and when the group of doctors came around for rounds her oxygen level was down again. But she is getting better. She needs one liter to keep her in the mid to upper 70s. Hopefully with a little more suctioning today and a good nights sleep, we will be on our way tomorrow. Of course we follow Darla Jane's lead....so we'll see.

for now she has her new little friend to help her feel better.

"it could be days"...

awesome. so...little miss is doing ok. she is definitly happier than she was yeaterday. Which, of course, is good. However, they are still needing to deep suction her every 4 hours and she it still on 2 1/2 to 3 liters of oxygen (at home, she is on 1/2 liter). The doctors today on rounds told me that "it could be days" for her to get over this. What is days though? All it means to me is that it's more than 1. So let's set our eyes on 2 days from now...

She needs to be down to her home oxygen levels and not needing deep suction any more for us to be able to go home.

home away from home.

So here we are, at the hospital again. Little miss was not able to keep her saturation up on a safe level of oxygen at home, so last night we were admitted to the hospital. At first there was a worry that it was a heart issue, but thank goodness it isn't. She has an upper respiratory infection (aka a cold). I'm not sure how long we will be at the hospital, unfortunately there is never a time line with a heart kiddo. We will be here as long as she is on increased amounts of oxygen and needing suction. With a heart healthy kid, they have more of a reserve. When they get sick they have a bit more in them to keep up. Darla Jane, however, is peaked at what she can give when she is healthy so any little bit of sickness takes it all out of her.
There isn't a whole lot more to report other than that, I will be sure to keep you all updated on her though.
Looks like we will be buying lots more hand sanitizer this winter. It is even making me contemplate home school...although the mental health of our household might be at risk then. :-)

update

On Friday the 28th we had a cardiologist appointment. Our Dr. felt over all she was doing well...except he would have liked to see her ready to be weened of the oxygen. Which she isn't ready for. Otherwise all else looked good. He scheduled us to see him again in 3 weeks, with an echo being done. Sometimes the inability to get off the oxygen is an issue of heart function and he just wants to be sure that's not the case...
Fast forward to the next evening... little miss's oxygen saturation is going down, we are turning her oxygen up, and off to the emergency room we go. They took a viral swab and sent us home...with some reservation. Continuing on through Sunday, she needed 2 liters to keep her oxygen up...and not even really up. She hit into the high 60s but stayed pretty consistently in the low 70s. We got a call from the emergency room on her cultures, she has "parainfluenza type 1" which is a fancy word for a virus that often causes croup symptoms and also causes restriction in the trachea and upper airways (hence the low oxygen levels) We went into the pediatricians office today to get a steroid shot that will hopefully open up those airways and allow little miss to get better O2 flow, and keep her out of the hospital.
I then wondered if her oxygen need at the cardiologist was from the start of this virus. I'm not sure...I don't really think so because leading up to this she was still needing the oxygen...just not as much as she needs today.
We will see on the 18th what the echo shows. But until then...pray that we can get over this "parainfluenza type 1" QUICK!

PS..the picture is during dinner. as you can see little miss gets food ALL over her face. and not much in her mouth these days. good thing her bottles are keeping up with those cheeks.