Another setback....

Posted Oct 17, 2007 12:01pm

Hey everyone,
Sorry we have not posted any in a few days. The computers here have been a problem. Anyway, since Monday Jenna has progressed somewhat. Monday evening she did not do so well with eating, so overnight they placed the tube back in her nose to help get her caught up on the calories which she had missed for the day. They have attempted since then to see if she will improve with her eating, which is good in the morning, but worsens throughout the day. She is not very interested in eating at this time. It takes everything to just to get her to attempt the bottle. They have increased her calories from 22 to 24 also. Anyway, so at this time the doctors have chosen for her to go home on the tube, and as she progresses with her eating, we will be able to remove her tube. Also, they have been attempting to get her off of the oxygen, but every time they attempt it she drops in her saturation levels. She has gone as low as the 50's the past couple of days. So at this point she is on 1/4 liter via nose and it seems as if this will be going home with us also. :( At this time they have her on ibuprofen as needed and tylenol for pain. She is also on Lasix twice a day and another water pill to pull the fluid. She is also on baby aspirin. The chest xray today has improved but is still cloudy. She is attempting to get the mucus out, by spitting up quite often. It is a bit nerving to watch your child go through this, because she is getting choked at times. So today through tomorrow, they are going to watch her to make sure that she begins to get cleared and when she does start to spit up, we are being advised on how to help her get it out. The echo from the other looks great, Dr. Eghtesady is very pleased with how she is doing. All the blood is flowing beautifully to her lungs. He did not want her to go home on oxygen, but she is most likely going to. So home health is being set up at this time. They are going to let us know tomorrow a better idea on when we will get to go home, most likely it will be this weekend. So unfortunately, things have changed slightly. But don't worry, our little girl is tough and will recover sooner than later. The situation at hand is not slowing her down with wanting to attempt to roll and spit bubbles through her mouth. She realizes after she attempts this it hurts and she gets upset. So we are trying to help her. We will post more news as it comes.
Thanks again for all your thoughts and prayers. Talk soon.

Love, Jenny, Justin, and Jenna