Trying to be patient...

Isabel did not move out of the ICU this week. It was so hard to be at the brink of a major step forward and for it not to happen...again. Although she has been doing so well, her potassium levels were low (mainly due to the diuretics that she is on to help her heart) and she required a higher supplement. Her belly was bloated, gassy, and distended earlier this week too, which can happen as a result of the electrolyte imbalance. She has had a gassy, distended belly many times before, but it has to be taken more seriously now that she has had abdominal surgery and a bowel perforation. So to be extra cautious, the docs stopped her feeds and took daily x-rays waiting for her bowels to move all of the gas through. I am happy to report that, as of today, her belly and x-ray looks great. They are restarting her feeds at 1/4 of her total volume and will increase them every 6 hours until she is back up to her full volume. At the same time, they will be working on getting her oral potassium supplements to a stable and adequate dose. This did push us a little off track of our goal and we are now looking at going  home at the end of January. Sincerely hoping that will be the case.


The Stable Vent Unit, that she will be hopefully be in by the first of the year, is a step-down unit, but they are much more strict about taking patients. It's essentially where ventilator dependent patients, who are otherwise ready to go home, make a stop. It is SVU team that makes sure that we, the parents, are ready to take on all of her care, that we have all of the supplies and equipment we need for home, and that we have our home nursing care arranged. They will also get to know Isabel before discharge because they will be the ones following us once we are home. They will manage her ventilator care and the weaning process for when she is ready to come off of the vent. So, they essentially want her "perfect," without the need for anymore changes to care or medication.

Tomorrow

Isabel has been doing extremely well. So well, in fact, that she is supposed to move out of the ICU and to the Stable Vent Unit tomorrow! It makes me so nervous to even write this. So hoping the transition goes well. Right now, our goal is to be home mid-January! Stay tuned for more of those details. Until then, here's a little story...

The other night when I was holding her, she kept turning her head to look at the TV. All that was on was Pandora Internet Radio, but she kept staring. So I sat her up facing the TV, with her back against me, and I put on the Disney movie Cars. She loved it! She just sat there with me for over an hour! Every now and then she would lean her head back and look up at me. It was so great! Me any my girl just hangin' and watching a movie.