Update from DR

Samantha will stay on IVs for a few more days and then she will start inhaled antibiotics. Instead of a month on and a month off she will alternate inhaled antibiotics monthly which means everyday she will be inhaling an antibiotic to try to keep the crud away.
Weight and BMI wise she is still doing fabulous.
Anyone that has any insight on the E-Flow nebulizer for me, please feel free to share, as Samantha is getting one.

Kathie

Update: Out of Hospital

Samantha is out of the hospital and on 2 IV antibiotics and 2 oral antibiotics in addition to everything else she takes. She is growing ORSA (resistant staph), Stenotrophomonas, and Tobra resistant Pseudomonas.
We will know next week how long she will stay on IVs and what her inhaled antibiotic will be since TOBI won't work for her.

Until Next Time,
Kathie

Our Luck Ran Out

Soooo, after 29 weeks of awesome luck, it is time for Samantha to go back in the hospital for IVs. Let's hope that this round works as well as the round she had back in February and she can have another 29 weeks or more out of the hospital after this.

Also, please keep a young friend of ours in your prayers, she is in the hospital with complications from a recent scoliosis surgery and needs all the prayers in the world.

Updates to come once Samantha is in a room and I know the plan.
Kathie

A little late, but good news from ENT

I am running behind on updating, but Samantha had a visit with ENT on Friday. He said she looked good and he will see her in 6 months unless she gets sick and needs to see him sooner. She has lost just a little weight, but no worries because her BMI is 97%. I have lost track of how long she has been out of the hospital, I am just glad that it has been long enough that I can actually lose track of it, but I know we are working on 7 MONTHS hospital free. YAYYYYYYY Samantha. She is still continually fighting something, and I just got over the flu, but she is still hanging right in there holding her own.

Till Next Time,
Kathie

Dr. Visit

We went to the Dr. today and Samantha gets to spend a little more time out of the hospital (we are on like week 16 now). She will do 2 weeks of Bactrim, then her 4 weeks of TOBI and another week of Bactrim, then back to the Dr. we go. She is trying to get sick but is still hanging in there nicely.
She is doing absolutely wonderful weight wise. She is now considered OBESE (47 lb 6.2 oz), so we cut back 500 of her calories that she gets through the feeding tube.

Kathie

Day at the Doctors

I am very proud to say that weight wise Samantha is doing absolutely wonderful. Her day time bolus feed has been discontinued so she only gets her night feed now.
Her BMI is a whopping 96.3% and the nutritionist likes it to be 75-85%, so for the first time in her life her BMI is more than excellent. Her weight is 45 lb 6.4 oz which puts her at 70% for her weight. Once again, outstanding, and her height is 3' 5.06" which is 8% so she is still a little short for her age.

Lung wise she is so-so, the doctor heard some noises that he didn't really like and she has been coughing up some nasty looking yuckies so we started a 14 day course of Cippro and if she isn't improving in 10-12 days he wants to see her back, otherwise, depending on her health she won't go back for 2 months.

I am not trying to jinx her good luck but I am also happy to say that we have broken the every 6 week thing in the hospital again, I think it is 8 weeks now since she has been discharged.

Please help me fund a cure to Cystic Fibrosis. Go to http://www.cff.org/Great_Strides/KathieLand6089 to donate. Thank You
Kathie Land

2 good days of dr.'s visits

Samantha had an ENT appointment yesterday and an endocrinology appointment today. Both went very well, neither wants to see her for 6 months, unless she gets sick and needs their services.
Samantha's A1C and glucose were taken today. Her A1C was 5.1 which is excellent and way down from her previous of 7.0 and 6.5 when she was sick in the hospital. The idea of insulin only when she is sick is still in the air and a decision will be made at each occurrence depending on her sugar levels.

Kathie