It's starting to feel like we are never going to get out of here...I think Claire is doing better, but just not enough to come home yet. Her levels drop as soon as she is taken off the O2, but not as fast. Hopefully this means we are moving in the right direction.
A few days ago they gave her a diuretic to try to get some of the fluid and congestion out of her. The day after this, we were able to turn her O2 down some. They are going to try giving her another dose tonight and see if it helps again. The Drs also put her on antibiotics. She doesn't have pneumonia, but just in case there is an infection this will get rid of it.
Thank you all for your emails, comments and visits to the hospital. If I haven't emailed you back yet, I apologize, and will try to soon. This hospitalization has been much harder on me than when she was born. Last time, Darren was with me constantly and I didn't realize how much that kept my spirits up. I know I am far from alone, but stuck here it's sometimes hard to remember that.
Hopefully tomorrow will be better. I still have my fingers crossed that we'll be out of here by Claire's 2 month birthday on Saturday.
so sorry to hear that you are still in the hospital! i am happy to know that claire's o2 levels are not dropping as quickly when she is left to breathe on her own - i am sure her o2 levels will come up very soon... hopefully quicker than they have been coming along.
ReplyDeletehang in there , i know it is so hard but just know that people you don't even "know" are praying for and thinking about you guys!!!!
by the way - i know you said claire needs to have open heart surgery in a few months... have you been able to have more than one cardiologist evaluate her for a timeline? the only reason i ask is because we saw two different cardiologists, both of whom are highly respected and they had similar treatment plans, but different timelines. we ended up choosing our cardiologist based on the timeline because one felt it was very important to have her heart "fixed" before she turned 6 months old or there was a risk of chronic hypertension (a recent study has shown this is what he had told us)... anyway - when whitney was about 2 weeks old she went from seemingly doing very well "all things considered" to VERY SICK and in HEART FAILURE. luckily our cardiologist realized that she needed her surgery sooner rather than later and that getting her "bigger" for surgery just did not outweigh the fact that she really needed to have her heart surgery asap... she had just turned 3 months old when she had her surgery, but looking back we maybe should have done it even sooner than that because seh truly never got much bigger until after her heart was repaired. additionally, her o2 levels were never at a very good point on her own until after her surgery either - i know surgery is super scary and she has to be healthy enough to have the surgery, i am just mentioning this because of our experience, if sharing our experience will help you at all... i hope it does! unfortunately we didn't really "blog" until right before her surgery, so there isn't much to read about the time when she was super super sick - but if you ever want to read about her ohs, it took place on dec. 1, 2008.
thinking of you!!!
~laura