Getting Ready for my Trip

Samantha is still doing fairly well. She will follow up with her docs in January, no need to call them now. YAAAAY.

Please pray for the CF community as our dear sweet Mel is being laid to rest today. She is dearly loved and will be forever missed.

Well, this time next week I will be on the road. I'm going to pick up my brother, and then my son, and head back north for the holidays.
Please, any family that can help with the expense (I have to go to Pensacola from Jax) then toward the north please contact me.
kathieland@comcast.net
904-200-0916

Love Yall,
Kathie

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

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

Can you say a GOOD DAY at the Drs.

Samantha went to GI and Nutrition today and we have finally (at least for now) overcome her weight issue.She weighed in at 41 pounds which puts her at 49%, her height was 40.1 inches which is 4% and her BMI is an outstanding 92%!!!
She is doing so well weight wise that for now nutrition is stopping all Duocal during the day and cutting her down from 250 ml for the day feed to 180 ml.

I am so thrilled, it has taken us 5 years to get here, but she is finally on track. They are so happy with the way that she rebounded weight wise after being sick and losing 8 pounds.

Kathie

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

2/23/09 Update We are HOME!

I am very happy to say that Samantha is home from the hospital and doing well.
She had hypertonic saline added to her meds, and when she starts acting sick I have to check her blood sugars.
NO home IVs this time.

Kathie

2/21/09 Update

I wanted to let everyone know that Samantha passed her oral glucose tolerance test which means that she only has to have her blood sugars checked when she is sick. She chose a cool pink glucose meter for her to have at home.

She actually coughed stuff up today, yay Samantha. The best we have been able to figure she has been swallowing it instead of bringing it all the way up .
And she is still on track to come home Monday which means she will be able to do an event with Children's Medical Network on Tuesday night, and be Universal bound over the weekend.

Kathie

2/19/09 Update

As I sit here typing Samantha is doing an Oral Glucose Tolerance Test. Her 2 hour post feed blood sugars have come down as she is getting better. Her A1C has not been drawn again, but they did draw some other labs to check to see if she has markers for Type 1 diabetes. The doctors really do not believe that it is CF related diabetes at this point because she is so young. Another option is all of the calories that are required to get and keep her at a healthy weight may be taxing the system a little bit. The last consensus when the doctors left this morning was to do nothing at this time and monitor her blood sugars when her CF is acting up and she is sick. At first they were talking about giving maybe 1 or 2 units of insulin just once a day when she hooks up for her night feeds, but I think that they have steered away from that idea for now pending the results of the OGTT.

Other than that news is good. Barring no huge set backs she will be discharged Monday with NO IVs, which means she will be able to enjoy herself at Universal next Saturday.

ENT said her nose and boogies look good so they will see her again in about a month, they just added saline drops in her nose to their routine. I will know more about what endocrinology wants to do and when they want to follow up tomorrow.

Till next time....

Kathie

2/17/09 Update

Sooooo.
Samantha will be in the hospital through the week and may come home sometime over the weekend or Monday of next week. Her hemoglobin A1C is still elevated (6.7 now and was 7) normal stops at 6. So, tomorrow Endocrinology will come do a consult with her, and she will walk across the interstate to try to get her to do PFT's.
With the 2 hour post feed blood glucose checks she stayed pretty much in range (90s and low 100s), but she had two that were high 130something and 149. The normal stops around 120. Also, with her tube feeds the way they are pulmonology is a little unsure exactly how to schedule blood sugar checks, that is where Endocrinology comes in.

Also, she visited with ENT and her nose was a little crusty, but otherwise looked good so she is going to start getting 3 drops of saline per nostril 3 times a day.

When I find out more I will be sure to update.

Kathie

2/15/09

Samantha is still in the hospital but is hanging in there well. Her bronchoscopy showed Pseudomonas and Aspergillis. Her blood sugars seem to be checking out good over all, though she has had two that were high so they are talking about doing an oral glucose tolerance test before she comes home, but that still has not been confirmed.
I still don't know for sure when she will be home yet.

Kathie

2/11/09

Samantha came off of her oxygen about 2 o'clock today and has been doing well without it since then. When she goes to sleep she teeters on needing it, but is still doing better than yesterday.
The doctor said today that since she had so much gunk in her lungs that she will be in the hospital at least 7 days and may be in 14 days before coming home.

Kathie

Update

Samantha had her bronchoscopy this morning and she did very well. She had a bunch of junk in her airways, especially in the lower right area which is were she always starts sounding yucky first when she is getting sick. She did fairly well on room air for the first 30 minutes to hour after the bronch, but then she started desatting to 88% and couldn't get it back up so she has been on 1.5L of O2 since roughly lunchtime, and is holding ok. The dr wants her to be 93% or better when awake and 90% or better when asleep. She has been holding right at 93% on 1.5L while awake and 91%ish while asleep on the 1.5L.

I will update more when I know more.

Kathie

Samantha is in the Hospital

Samantha is back in the hospital. She has been off and on of 1L oxygen, but she is doing ok. She will have a bronchoscopy in the morning to try to find out what is causing her to have lower respiratory infections. They decided to do a bronch because her throat cultures have changed so much over the last few months with varying sensitivities and resistances to various meds.

Kathie

Update on Samantha

Samantha is hanging in there. She is still battling the pseudomonas. Right now she has acute bronchitis and was put back on another 3 weeks of Cippro and is to continue her TOBI for another 28 days (making 56 days straight) to try to keep her out of the hospital.

In the mean time we are gearing up for Great Strides. Please take a moment and donate here so we can all work together to make CF=CURE FOUND.

Thanks
Kathie