Friday, November 18, 2011

Sentenced to 16 days Minimum :o(

Even though it's only been a seems like I have a years worth of info to report! So much has been happening here in the past week! Well, as most of you know, Jordin had a bronchoscopy and lung CT scan on Friday the 11th. Following that we were admitted for more IV antibiotics :o( I will try not to leave anything out!
I will start from the beginning and try to stay on track! First off, her bronch again showed alot of mucus. They even gave me pics of her mucus filled airways as well as some mucus plugs in her lungs. Her CT scan showed, again, LOTS of mucus as well as alot of Bronchiectesis (in short...(brong-ke-EK-tah-sis) is a condition in which damage to the airways causes them to widen and become flabby and scarred. In bronchiectasis, your airways slowly lose their ability to clear out mucus. The mucus builds up, and bacteria begin to grow. This leads to repeated, serious lung infections. Each infection causes more damage to the airways. Over time, the airways can't properly move air in and out of the lungs. As a result, the body's vital organs might not get enough oxygen.).
SO, of course the doctors are very concerned as Jordin is only 2 and should not have encountered problems like this so young :o( At the same time they do a lavage (spray saline in the lungs and suction it out to get samples of everything in there as well as clean out some of the accumulated mucus). So far her culture has, again, grown lots of MRSA and also aspergillis again :o( Not good. The MRSA is just liking living in her lungs :o( She also still has a sinus infection :o( Grrrr....
SO, for all that, she is on 3 IV medications (Vanco (only IV option as her MRSA is resistant to all other they can use) runs for 2 hours every 6 hours because she developed Red Man's Syndrome from it so she also has to be given Benedryl before her IV is ran, Tobramycin runs for 30 min every 8 hours due to the nasty resistant psuedo she cultured in her lungs earlier this year, and Ceftazadime which is also 30 minutes every 8 hours...nearly impossible IV schedule!)
Since we didn't start the Vanco til day 2 and they want to be as aggressive as possible at this point...we were told a total of 16 days we will be here as of now. I am not sure what they will say if she doesn't get better by then :o/ We just ran this same regimen about 1-2 months I really have my doubts that this is going to work this time as it didn't work last time. But at least this time we will still be here and they can see that it doesn't work (if it doesn't! Hoping it works this time!!!!)
So that's for the lungs for now...I Okay, so I just lost more than what is typed up already cuz of this darn hospital login I gotta make this short and to the point now cuz I don't have time to go over everything I just did! SO, Jordin's o2 has been dropping at night, as low as 68% at times. So she is going to have a
sleep study done next week in our room here to check for any type of sleep apnea or any other causes.
We are also working on her vomiting. She has been able to go about 2 days at a time twice now without puking! We are draining her gtube/stomach into a farrell bag (just another thing for her to carry around with her). It has been helping def...but not a fix per say. Oh and we are working on a possible new way to do her enzymes. It will be dissolving them in sodium bicarb and administering them into her j tube...avoiding the throwing up of them and all the mayo and applesauce we use right now :o) We were going to do it already, but then her stools changed so until we figure out the cause of the change, whether it's just the abx or if it's c-diff (which they are testing for today) we don't want to change anything just yet. So hopefully soon that will avoid clogging of the tube too!
Ashlee is doing well at home with Dad and Grandma.
I have it set up for Ashlee and Dad to come stay over this way at a hotel next week since we will be here for Thanksgiving. We miss them and can't wait to see them! If I forgot anything I will be sure to include it in our next blog!


  1. Praying so hard for her!

  2. She has so much going on! Poor thing! Have they done anything to treat the aspergillus? APBA won't respond to abx and can cause a dramatic drop in lung function but it can be treated with other medication (antifungals and steroids I think.) I hope they are able to get her feeling better soon! <3