Monday, December 21, 2009

Latest Updates

Sunday, December 20

C's echo this morning is still showing some fluid on one side of her heart. The fluid is decreasing just not as fast as I hoped. She is continuing to receive Motrin for anti-inflammatory purposes. The cardio doc told us this am that there are two ways fluid collects around the heart. 1) the capillaries are leaking (which of course she has like 5 risk factors for) and/or 2) there is inflammation allowing for fluid to build up. Because of the way C's effusion grew and the way she is responding to the Motrin the cardio doc thinks the fluid is being caused by inflammation. The inflammation kind is actual the better kind to have as it will go away quicker with less chance of coming back. So that is good news but still stinks it is not going away as fast as I like. The other thing holding C up is of course her eating. She really sucks at it. And of course it has gotten worse. This morning we met with the GI doctor here. He reviewed her info, checked her out, heard all the things we had to say and watched her eat. He still thinks reflux is the problem and wants to exhaust all medication options before doing any type of invasive procedure. Well, that's good. I'm all for no more invasive procedures if we can avoid them. The GI here was a little perplexed by the meds she was put on by the GI in Fort Myers. He has changed them around and we are hoping for good results. Since she is still here in the hospital and does have her iv, the GI doc is running her reflux meds through the iv to get maximum, quick benefit. Also, instead of three meds he has her down to two and these should work better for her. Here's hoping. The GI doc did not even mention feeding tube in conjunction with C other than to say they are the one who get called to consult on feeding tubes. I think this is a good sign that they think C will eat better once these meds really start working. So even though we are still in the hospital the news is not horrible. Seems to be the way things work for us. We get stuck in the hospital for things that are serious but not critical and end up being more annoying, frustrating and inconvenient than anything. The thought is that we will be getting out of here Tuesday. Just waiting on the fluid to go away and C to eat. Thanks for all the good thoughts and prayers. We are hoping to be home by Christmas.

Monday, December 21

Groundhog Day. Seriously. I feel like we are repeating the same day over and over and over again. It does not help at all that I do not leave the hospital. Never have the normal changes of the day. Much like a casino minus, you know, all the fun. C is back to her smiley, laughing and talking self. However, she is fast getting tired of this place and is as anxious as me to get out of here. The new reflux meds are having a positive effect. Will see how well they are still working once she has them in her system for a few days. I am really hoping this new mix of drugs will work for her. Today I heard the story of one of the nurses daughters. She is the third person I have heard from saying that the prevacid/reglan mix is what worked for their kiddo. I really pray that C will get some relief. Of course even with the new reflux meds we have added another tummy upset drug in the form of motrin. C is taking the motrin to help with the inflammation to get rid of the effusion around her heart. Go figure. Give on one side, take on the other. The echo this morning did show there is still some fluid by her heart. Much reduced from when we come here Thursday but still not all the way gone. All the doctors I have talked to seem to think that this trend of shrinkage will continue with the meds. C's iv started leaking today. Grrrr. She is such a hard one to get an iv in that all the nurses (iv team, baby iv stick specialists) around here know her by name. Fortunately the iv was able to come out without a new one going in. She is now taking all her meds by mouth. Her iv going bad today has actually helped us out. The docs all wanted to see how she would do with just oral meds. Of course this means she needs to be monitored. Yep. And I did not hear from the cardio doc all day. It finally took Kevin calling our regular cardio doc and paging the one here in the hospital before I saw the guy. So freaking aggravating. If C is not important enough to even be seen/evaluated today by the cardio doctor then why in the hell are we still here? Can't we do this kind of monitoring from home with visits to the cardio docs? Anyway, at least with the iv going bad she could start the meds orally and start the watching period Otherwise who knows when the cardio doc here would have done it. So, there is a slight possibility we could go home tomorrow but more than likely will be Wednesday. Still have a great chance of being home for Christmas. Yea! But also...oh crap. We have all the gifts for the kiddos but nothing is wrapped yet. Arrrgggghhhh. Anyone in Fort Myers want to come to my house and help wrap presents??? Pretty please? Does not feel like Christmas to me. Hoping once I get home I will feel the spirit. I know I say it a lot but I do really mean it...thanks for all the prayers for us.


Lisa said...

If I could be there to help out with your presents, I would! I so feel your frustration with this whole process. It sounds like things are going well overall, though. There's still hope for home for Christmas and that's a good thing! Hugs and prayers headed your way.

angie said...

I am glad to hear the fluid around her heart is reducing & I really hope prevacid & reglan work for her. Emma took both of those plus zantac, but we don't really think she needed them. She hated the prevacid (cried everytime we gave it to her) & the reglan made her vomit. Her pedi finally took her off the reglan. Maybe since Carolena has some tummy issues theses meds will help her. You are all still on our prayer list & we are thinking happy thoughts about you coming home before Christmas.