Waiting Again

Audra is doing well and got her floor orders yesterday - meaning we are set to go to general care. But again, there are no beds so we are waiting. She is still getting some oxygen over a tube but has been doing well with the very slow ween.

She got her central line out yesterday so this means we can pick her up when we want without a huge effort. It makes things much easier.

We are also working on feeds. She has been having some spit ups but nothing too concerning. Just enough to get all over her swaddle blanket each time and get out some of her meds. We are going to start again today with the bottle. Hopefully Baby Audra will take back to her bottle quickly and even better than before. She has been staying strong with her paci so this should help with the sucking. We shall see.

When we finally get to the floor they start mentioning that exciting word - discharge. We are hoping to get out of here before the 4th of July because we have coordinating 4th of July outfits for the girls. We bought them weeks ago and never thought we would be at the hospital now. Just goes to show that you never know. We don't want to get ahead of ourselves but at least we are on track!

Finally, today is the last day of the year for the fellows here. Some will still continue, some change assignments and some are done and moving on. One fellow of Audra's surgical team, Steve, had his last day last Friday. He worked on both of her surgeries so far and did a great job closing her chest. He is off to Australia for two years. Our favorite fellow, Jay, will still be in the clinic and one of the fellows who has been following her for much of Audra's stay, Libby, has one more year. It is odd to think that for Audra's Fontan surgery (when she is 18-24 months old) all the fellows will probably have moved on. It was nice getting to know them pretty well with our two stays so close together.

Progressing Yet Again

Audra's chest X-ray from this morning looked good. She is being weening to room air here slowly, maybe sometime tomorrow. She should also be getting rid of her central line tomorrow. So things are progressing right along. Our attending mentioned that we are getting towards moving out of intensive care but not quite yet. We are hoping that things continue in this direction.

As always, thanks for your support. It means a lot!

Off the Vent Again

Audra came off the ventilator again this morning and is doing well so far. Her right lung sounds good and we will see in her morning x-ray where her diaphragm is. If it is still low, as it should be, she will move from the breathing machine she is on now to one that doesn't provide positive pressure in her lungs. We are progressing slowly in hopes that the small changes keep her diaphragm in its place. The rough part is that after all this there is still a chance she would need surgery to pin the diaphragm down. It is a minor surgery (so they say) and would add in a few extra days to our extended stay. Of course, we are hoping and praying that this is not the case but will be waiting to see what will happen these next few days.

Audra is much happier off of the vent. She is able to have better quiet awake time and enjoy being held.

Rough Day

Today has been a pretty rough day. Audra's right diaphragm is paralyzed. Right now it is not moving up to restrict the air in her lungs but once she is off the vent, it may move up and stay up. So the plan is to take her off the vent tomorrow morning to see how her diaphragm and lung do. She may have to have surgery to keep the diaphragm down. Whether she has surgery or not, the diaphragm may regain function in 6-10 months. Then again, it may not.

We also did a follow-up hearing test that found that Audra has some hearing loss in her right ear. She cannot hear high tones. Right now it is too early to say if this will have any effect on her or not.

Please keep Baby Audra in your thoughts and prayers. She could use it!

Back on Track

Since going back on the ventilator yesterday, Audra has done well. We popped her right lung open and her oxygen saturation levels have shot up.

Her echo did not show any cardiovascular issues although it did show her right diaphragm was not moving as much as we would like. We have to keep an eye on this. If she goes off the vent and her right lung collapses again, it is most likely due to the diaphragm issue, which we would then have to deal with. But right now things are going smoothly. We have been able to ween the settings on the vent. It also does not look like she will need to have a cath at this point.

Since it is Sunday, it is a day of rest. No really, they want to keep her on the vent until the morning to give her a chance to rest and recover. We will likely do sprints tomorrow morning to move toward extubation (getting off the vent). So hopefully, there will not be much to report here today.

We finally moved to a private room last night! As we learned, a private room dies not indicate progress or lack thereof. You do have to be stable enough to move out of the bay but it is more an issue of room space and staffing. Nonetheless, our ears were ringing last night at how quiet it is here. It feels great to have our own quiet space.

Vent Again

Audra is going back on the ventilator as we speak. They are going to try to put in a new line in her artery as well. Then she will get an echo - from our favorite fellow who did all her prenatal echos.

After this we see how her oxygen saturation levels are and look at the echo to determine if we need to have a catheterization. The cath would probably be on Monday if it is necessary. We shall see.

No Clue...

Right now we don't know what the day holds. Around here you never can know but today is especially uncertain.

Audra did not have any improvement in her lung. And now her oxygen sat levels are not where they should be for the amount of oxygen she is getting. We (ok the docs) are not sure what is to blame for this. They do not think it is the lung and think perhaps there is another issue. We will have an echo here shortly but they don't expect to see much on that. Next steps would be going back on the ventilator and possibly doing a catheterization (which is another surgery). And we just don't know.

On another note, today our oldest niece turns 19 :) I remember being at the hospital with my sister like it was yesterday! Yikes, time flies!