Not Doing So Well ... Again...

Well after 2 weeks of Jordan sounding very clear and thinking that she was getting better at swallowing, Jordan is now back to sounding VERY wet and gurgly. We first noticed on Friday and by Saturday she was extremely congested. In fact, my brother was in town and was holding her and wondered if she had a bad cold because of the rattle in her chest. We never changed anything other than to increase her Zantac which should clear up any reflux she may still be having. We are baffled why she all of a sudden took a turn for the worse.

At therapy on Tuesday, Ellen was very concerned at how wet she was and the fact that she wouldn't cough. We slowly tried to feed her Pediasure thickened to nectar, honey, and honey/nectar consistency to see if it made a difference, but it didn't seem to change anything. We also tried juice at nectar and honey/pudding consistency, but again, no change. Finally after about 1/2 hr of feeding her she had quite a few hard coughs and cleared it all out. Nurse Jane was amazed at what a difference the cough made. This tells us that it isn't deep in her lungs but most likely in her airway and throat and maybe a little bit in her upper lungs. This is probably why she isn't getting sick very often.

By the end of therapy, Ellen sat and just looked at Jordan for several minutes trying to figure out what to do with her. She said she wished she could feed her in front of an x-ray machine every week because she's a different patient every week and she just never knows what is going on inside when we are feeding her. This week we are trying feeding her 2-3 oz of honey thickened Pediasure by spoon with intermittent honey thickened juice. Then giving her a bottle with honey/pudding thickened Pediasure to fill her up. Ellen said that Dr. Burdo-Hartman said that Jordan needs to fail at therapy before she will approve the G-tube and that it looks like that might be what we are facing at this point.

Please keep little Jordan in your prayers - we need her to continue to take a good quantity of food but we need to get it in her safely. Also please pray that she doesn't get sick - because she isn't coughing as often, she is more at risk for aspirating not only when eating, but just from normal breathing because of all the gunk in her airway.