Thursday, September 23, 2010

Still waiting

Today was about the same as yesterday. All the vent settings we so slowly chipped away at have come right back. She is back on pressure control and a rate of 55 (it was 60 earlier today but the doctor lowered it again).

There are some issues with her electrolytes since she had extra Lasix and that is causing problems with her blood gases. It is all more complicated than I can explain when I am this tired. Hopefully they can get it under control so she can have her Lasix back. Her lungs were not quite as wet today on the X-ray but that won't last long without a diuretic.

The doctor keeps saying he has steroids in his pocket and if things are not turning around by tomorrow he will use them. I wish he would already.

We also decided officially to delay the GI surgery. She just is not in a place where that is an option. She has not grown in over a month so after she recovers from the trach the priorities are weaning her sedation and getting some good nutrition in her.

We appreciate any good thoughts and prayers you can send. This has been very stressful for us both and we are doing our best to get through. Fortunately my niece came to visit this week so we have been able to come and go to the hospital much easier than usual. Yesterday Ty was also the first cousin to meet Natalie. Natters slept through it, of course, but was charming nonetheless.

The good news is that Natalie is comfortable and looks very healthy. She has great color and seems to love life without the ET tube. It's just the lungs. When her fiO2 drops below 60 again I will cry from relief. This 86% business is too much.


  1. I am in the same boat as you are. Fighting for Lasix. Them talking about steriods. For some reason nothings working for Kason's lungs. If you'd like some comfort---he's at 90% oxygen! They say part of that is because he was off the wall so long (on a take home oxygen tank that is 100%) so he got dependant. :(

    This whole thing is super frustrating. They are going to completely wake him up again today so we're wishing for luck.

    I hope Natalie does much better today!

  2. Have either of you talked about a daily maintenance dose of diuretic? Tara has gotten a less powerful diurectic for months now to keep the fluid off her lungs. She is on spironlactone. They decided on this specific one because the child doesn't get such a bad electrolyte imbalance. Tara is not on any supplemental vitamins. She did occasionally require a dose of Lasix while she was still in the hospital recovering from her surgery but now her daily dose does the trick. Best of luck to both of you and feel free to ask any questions. I have been in your shoes and can offer the little bit of advice I have experienced. Look me up over on Inspire!

    tara_mommy09 (Inspire)