Rest in Peace Mel

Mel,
You touched so many people, may you rest in peace now and know that your suffering is over. CF sucks, but you managed to keep everyone's spirits up through the worst. To your best friend who was there with you....bless you so much no one could ask for a better friend. May God carry you in his arms as you deal with this loss.
Kathie

Update on Samantha/Ask for help to get my brother home from Navy AB school for the holidays

It has been brought to my attention that I had not updated this lately. So here is the update from Samantha's carepage. Since this update her feeding tube was changed and she is still doing well.

Also, please keep another CFer in your prayers. I do not want to put the name on here without her permission, but she is in the hospital and very sick, please send many prayers her way.

Samantha is doing well, looks like she will be out of the hospital through the holidays. She will be getting her feeding tube changed soon, but that is just a quick outpatient appointment in the surgery clinic.

Also, for my family that reads the page, I am trying to get my brother David home for the holidays from Navy AB school, but I have to drive to the other side of the state to get him before heading north to go home.
Anyone that can help pitch in a few bucks for gas please contact me. kathieland@comcast.net or 904-200-0916

Thanks Bunches
and Happy Holidays
Kathie and Samantha

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