Kaleb has been battling some junk since before Christmas. We have had him on oral Cipro and inhaled Cayston but I have not seen much improvement. His culture from December showed one strain of colonized Pseudomonas growing mildly but since it is always there, mild isn't a big deal.
I have noticed more congestion and coughing over the last few weeks and at his appointment a week ago we cultured and did PFT's. His PFT's (lung function) dropped dramatically 13% in the mid 50's - low 60's and that with the increased symptoms concerned me.
At his appointment last week, Kaleb's doc gave me some guidelines for hospitalization. Since he was going out of town for a month, (medical missions trip) he was leaving instructions with me. We were supposed to go back in for repeat PFT's in another week but when we got his sputum culture results, we knew we needed to see Dr. Lee for a consult and chest x-ray.
Kaleb grew gram positive chain bacteria (b. strep and bacterial pneumonia) and then 2 different colonized resistant strains of Pseudomonas. That is not good for several reasons. First, he grew it ON CAYSTON which isn't supposed to happen and hasn't happened since we started Cayston over a year ago. It is an inhaled antibiotic specifically for resistant pseudo. Second, there are TWO strains. He has only ever had ONE. So we have a new stubborn resistant (not responsive to almost all antibiotics, only one IV is showing sensitive) colonized (won't ever go away, always there) pseudo that has taken residence in my boys lungs.
With all that info, we decided to admit and get IV's on board ASAP to limit growth and scarring.
I am a bit nervous as this is the first time without Dr. Carey in the hospital. Dr. Lee is great, we know him, he has treated Kaleb before but WITH Dr. Carey. I have issue with change, but I am trying. He is great, I am just a control freak.
So we are waiting on another chest x-ray because we heard crackling in his left lobe and we are suspecting some active pneumonia, we have about every lab on the planet being run on his blood including the aspergillus he has continued to culture (they said it is also a colonized) since July to see if it is active (it causes dramatic drop in PFT's) and we are doing another sputum culture (that won't be back for a few days). They will also run a panel on his blood sugars to check to abnormalities as he falls within the age guidelines for CF related diabetes.
We will see Dr. Lee tonight to see what our plan of action is. We are adding a few new vitamins besides his Vit D3 and Vitamax. He is adding Beta Carotene, Vit E, and Vit A. He is also adding a new once a day pill/antibiotic called Zithromax (this is common for chronic colonized pseudo growth). He is going to be on Zosyn and Cefapime IV and then depending on what the labs and cultures say we will adjust if necessary. Both of those he has been on before and both don't have any toxic side effects so that is great!
We are in contact precautions simply because of the resistant colonized pseudo. We don't want other CF patients to get it and we don't want the nurses to carry it to other patients. This means gloves and gowns every time anyone comes in and I cannot go to common areas like the parent kitchen (drat). We can go out for walks around the halls (Kaleb has to do laps everyday) but we can't stop and hang out or go into any common areas and Kaleb has to mask up.
We are good with visitors but we ask for a few things.
-Call, email, or text first so we can make sure we don't have everyone at once and that Kaleb is up for visitors.
-If you have been sick or feel sick please don't come. You can always drop stuff off at the nurses station or I can mask up and meet you in the lobby.
Here is our wish list:
For Kaleb and Kristi: Gift cards to Panera, PF Changs, Olive Garden, Goldies, Wendy's, starbucks, walmart, target, mazzios, dominos, $ for food
For Dave and Hannah: Qdoba, sonic, subway, Taco Bueno, mazzios, dominos, walmart, $ for food
Kaleb would love: Garfield DVD's, Lego hero factory Rocka and Furno, Tom and Jerry cartoons and movies DVD's, Lego Dino sets, Lego Star Wars sets, Book #2 , #3, #4 in the Eragon series by Christopher Paolini (Book #1 is called Eragon, book #4 is called Inheritance), pretzel M&M's, reeses cups, gummy bears, he needs a reusable water bottle with lid that closes (we left his at home)
Kristi: anytime anyone wants to bring me a meal I would LOVE that, I never know when I get to eat up here. Just contact me and tell me where and I will let you know! And our course, I will never turn down starbucks coffee (Skinny Vanilla Latte, Skinny Carmel Latte, Skinny Carmel Machiatto)!
Thank you so much for your support and prayers. We don't know how long we will be here but I will post at least 1 update a day on here and will link to fb.
~Kristi
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