Update on Samantha (pseudomas)

I just got a call from Samantha's doctor and her latest culture shows that she is culturing pseudomonas ( http://en.wikipedia.org/wiki/Pseudomonas_aeruginosa ).
She has not cultured this since 2005 and then we were able to eradicate it within 3 months, hopefully we will have the same luck this time.
She will be on bactrim for the rest of her month on, cippro for 3 weeks, and TOBI.

Kathie

Fashion Show

Samantha had a wonderful time at her fashion show this past weekend. You can view pictures here.
Kathie

Update on Samantha

Samantha got to come home on Thanksgiving morning, and had a good Thanksgiving at home. I am very proud to say that she is up to 42 pounds and seems to be doing well.
She goes back to CF tomorrow to see if she gets to come off of IVs or if she continues for another week.
Kathie

Update on Samantha

1. Well, the doctors were talking about maybe coming home tomorrow (Wednesday) but tonight Samantha spike a fever of 103 and was having a bad headache. They drew a blood culture, and her fever did break, so now it is a waiting game to see what the doctor says tomorrow.
   If she is in the hospital on Thanksgiving I am cooking everything and having Thanksgiving at the hospital with Samantha.
   
   I will update once I know more.
   Kathie
   

Samantha

She has not had any more blood, and seems to be doing well. Discharge date is still up in the air, but doctor talking like it will be before Thanksgiving.
Meds and airway clearance should be starting back soon.
Kathie

Samantha

Ok, so before I could get it updated that Samantha was home from the hospital (she came home Tuesday), she has been put back in the hospital. At 5AM this morning she started coughing up blood so we were ambulance bound to the hospital. She has since stopped bleeding and seems to be doing ok. She will be in the hospital at least through the weekend and then reevaluate from there.
Kathie

Samantha

I had to run home to take care of some things and thought I would update. Samantha is showing improvement, and is scheduled to be discharged tomorrow morning. We should be out of the hospital in time for her fittings for the fashion show. She is getting so excited about it.

Kathie

Update on Samantha

Sorry it has taken so long to update. The internet in Samantha's room is not working. So....she seems to be showing some improvement, she might get out Monday...still don't really know for sure.
Her sputum culture is showing that she is growing Enterobacter again (the same thing that caused her to be so sick Dec 2007/Jan 2008).
They have her on 3 IV antibiotics in the hospital, but I am not sure how many she will come home on.
She has her fittings for the fashion show on Tuesday. If for some reason she is not ready to be discharged by then the doctor is going to try to get her a leave pass long enough for us to go do the fitting and then go back.

When I know more and get back on the computer I will update again.
Kathie

Samantha

We will be going to the hospital in the morning for Samantha to be admitted. This cold or whatever she has been fighting just has not been kicked by the oral and inhaled antibiotics, so the doctors feel that it is time for IVs, and to go ahead and do them before we get into the holidays and Samantha's fashion show.

I will update when I know more.

Kathie

Great Surprise for Samantha

So a great surprise for Samantha today. She got to go to the FL/GA game here in Jacksonville and got to meet the FL cheerleaders. She had an absolutely wonderful time.
Pictures will come sometime over the next few days.
We have been going since 10 this morning, so now it is bedtime.

GATORS RULE!!!! 49-1o

Halloween

Some of the Halloween pictures are up. She had so much fun being Tinkerbell and she won second place in the costume contest.
More pictures will come over the next few days.
Go here to see Halloween pictures
Kathie

Samantha Update

So, Samantha is good for now. The doc thinks she got a cold about the time she was clearing up from the previous junk. She is going to be getting CPT 3-4 times a day, increasing Pulmozyme to twice a day for two weeks, and staying on the antibiotics until Nov.11. I have to cal Nov. 7 to update them on how she is doing and she goes back in for an appointment on November 11, at which time she may or may not go in the hospital depending on how she is doing.
Her weight is up to 39.8 pounds. Which means we get to cut out two of her day feeds and see how she does.

Kathie

Samantha, ER, Pictures

Pictures are up of Samantha's pumpkin, hope everyone enjoys.
Also, had to make a trip to the ER tonight, she began hallucinating, talking about big butterflies trying to eat her, it turns out she was having a very rare reaction to the levaquin, so she isn't taking it anymore. We were told to follow up on Tuesday with the appointment that we already have and to be prepared to be admitted.
Look here for the pictures.
Kathie

Samantha

Samantha had levaquin added to her cocktail of meds on Friday. She had gotten better on the Tobramyacin and Bactrim, then started getting sick again. She follows up with CF Tuesday morning to see what the doctor thinks.

She also finally got her flu shot so maybe the flu will stay at bay. It has worked so far, she has had the shot every year and has not gotten the flu, even the two years that I had the flu she did not get it.

Otherwise, we have carved her pumpkin, pictures will be up soon, and she will be Tinkerbell for Halloween.
I also enrolled her in something called Kidgets with the local mall so she can eat breakfast with Santa and the Easter Bunny and do a lot of other cool things.

She also has fittings for her fashion show coming up on November 18, and the Fashion show is December 6. I will post any pictures from that stuff as soon as I can after the events.

Kathie

Samantha and Car

Yes you read that right I finally have a vehicle after my other one died a little over a month ago.

Samantha is still holding in there on oral nebulized antibiotics, some days are better than others, but so far so good. She is feeling a little yucky this morning so she is still laying down but she needs the rest so that is good. Also, she currently weighs more than she has ever weighed before, a whopping 39 pounds. How great is that I am so happy for her.

Kathie

Here We Go Again

Samantha started coughing and clearing her throat over the weekend so I increased her albuterol and vest, and it isn't helping much. So I called clinic today and she is starting back on oral and inhaled antibiotics. Hopefully (fingers, toes, and everything else crossed) hoping that they work and she doesn't have to go back in the hospital. She has been doing so well and is actually beginning to gain weight, still slowly, but we are getting there.

Kathie

Very Happy Weight

I weighed Samantha this morning and I am very happy to say that 3000 calories a day is working. She is up to 37.8 pounds, which puts her BMI at 17.28%. The CFF recommends BMI be 21% so we are not there yet, but very, very close. The highest her BMI had been before this was 16.2ish%, so a great improvement. According to the CDC chart for BMI for age Samantha is right at 95%, how absolutely wonderful.


THREE CHEERS FOR SAMANTHA!!!!!

What It's Like to Have a Child with CF (came from a friend on MySpace, but still very true)

Samantha has gained a little weight, but the doctor doesn't think she is gaining fast enough, therefore, another can of formula has been added each day. That puts us at 6 can a day and 3000 calories a day. Back in a month for weight check.
The added formula, is causing digestive issues....so I have a call in to the nutritionist to see what if anything we can do to help that out...

WHAT IT'S LIKE TO HAVE A CHILD WITH CF!!!!Every day is a different day - you hold your breath and curl your toes each time they cough, hoping and praying it's not a precursor to something worse.

Like any parent, you sit up at night when they're sick with fevers - but amplify this by holding the nebulizer mouthpiece of a snoozing or coughing child while you stare sleepily into the dark night. While the rest of the world sleeps, some tiptoe quietly into their child's bedroom to infuse a 12:00 a.m. IV treatment.

Some parents kiss their children good night after reading a storybook and supervising teeth brushing - while some parents of PWCF also hook up a nightly tube feeding. This of course is after the nightly breathing treatment and favored method of airway clearance, e.g. clapping, flutter, vest, pep mask, etc.

During these times, you learn how to operate on less sleep - and with an eye on the medical equipment surrounding you, wonder if it's possible to really take coffee intravenously...

You learn to analyze the minute details of the monochromatic contents in a spit cup - and nervously watch for flecks of blood. You grit your teeth if you hear them cough up what sounds like a ton of gunk - to learn they spit into the sink and washed it down before you could check it.

Changing the diapers of a baby with CF can sometimes be an exercise in gag control... Your toilets might plug up on a regular basis and you consider buying stock in Lysol products and whomever makes Cottonelle and Charmin...

Parents of CWCF rejoice at each inch attained in height and every pound gained in weight - and cry at each ounce lost. School-age children take tests in school - our kids do too, but they also take blood tests, sputum tests and pulmonary function tests - some have bone density tests. School children have photos made each year - so do our kids, but they also get a photo taken of their lungs - and sometimes their sinuses and intestines too. Some endure finger sticks if diabetes is present. We aren't lucky enough to have a grading system of A-F - we have to figure out what numbers best apply to our child and hope human error hasn't cost us an extra stay in the hospital or the dreaded news the child is now resistant to a certain antibiotic.

You learn how to hide enzymes in the foods of recalcitrant infants and tots. You learn to read labels for the highest calorie content. You learn the meaning of a well-balanced diet and your expertise in food preparation begins to rival that of Martha Stewart - presentation is 90% of the art of feeding any child.

Anytime a Certified Freight truck goes by - you get a lump in your throat. Darn those big red and green CF initials anyway... Aren't we allowed to forget for just one minute?

But on the other hand - you become a more compassionate, empathetic, and patient person. Despite trials, you have the opportunity to attain the golden awareness that everything you say - everything you do or don't do - really makes a difference in the life of your children. Every moment is precious. Even the smelly moments...

Being the parent of a child with CF enables you to develop an inquisitive and scientific mind - scoping out information about genes, cells, organisms, herbs and treatments. Even if we weren't good at science when we were kids - just look at what we can do now! You also become adept at handling insurance and hospitalization forms...

You learn to be gracious and tactful even when you don't want to be, like when a stranger or your child's new barber comments on your child's "cold," or a clothing salesperson comments upon sizing difficulties because your child is "too" thin for his sleeve length...

You learn how to be assertive so doctors and staff will listen - really listen to what it is you and your child need, because they are not gods nor mind readers...

And even though you try not to push the envelope on the words "hope" and "cure" - they are always in your heart.

Most every parent sleeps with one ear attuned to the littlest sound - but some parents of a CWCF listen for absence of sound, "Is the oxygen tank working?" "Why did s/he suddenly stop coughing?" "Why isn't the air purifier humming?"

Sometimes you find yourself doing a load of laundry in the middle of the night - after your child has coughed so much they've finally vomited on their sheets and blankets - or fevers have soaked everything.

In the beginning, you wonder, "Is this something I should call the doctor to report?" Then you learn to trust your instincts - you know when to call the doctor - and you want to be able to go straight to the top instead of dealing with a revolving door of telephone receptionists or approval from an HMO.

As a parent of a CWCF your spelling and vocabulary improves. While your friend's minds are turning to mush from Barney and Mr. Rogers, you're learning to pronounce and spell words like: pseudomonas, aspergillus, and cephalosporins.

You get a crash course in physiology and biology. You learn about clubbed fingers, oxygen and carbon dioxide exchange, and the role of the pancreas...

...And Part II of the sex ed talk you have with your teen takes on the added vocabulary word: vas deferens - along with the reminder, "Just because you might not be able to procreate, doesn't mean you can go out and test the theory... your risk of contracting a sexually transmitted disease is the same as others in your peer group."

After Christmas, while some are taking advantage of sales, you hit the pharmacy to pre-buy meds to take advantage of year-end tax deductions.

You ignore the jibes of your friends who think you're obsessive-compulsive because you wash your hands frequently. You begin to resent the fact you have to remind health practitioners to wash their hands before touching your child or the things in his hospital room.

You seethe when other parents send their kids to school sniffling, their noses caked with green crud. You buddy-up to the school secretary so when your child wakes up sick, she doesn't get tired of you calling and asking, "So... just what is going around the schools right now?"

You teach your child to share - but stand aghast when your son's girlfriend shares her pre-chewed gum with him. At ticker-tape speed, your mind reels off the cost of antibiotics and vitamin c...

You understand that when friends and relatives ask about the well-being of the CWCF, they don't mean to exclude the existence of your child w/o CF.

Sometimes you feel like you're in a 3-ring circus. You juggle and balance home, work, hospital, and siblings. You often walk a tight-rope of emotions. You're in the lion's cage facing home-health and insurance issues (who else would hire so many Bozos?). You never hear about people running away to join a home - you wonder why people would run away to join a circus...

You worry about your CWCF on their first sleepover. You count your blessings when the parent of your child's friend says, "Show me how to do cpt so you can get away this weekend."

In some parts of the world, there are certain rites of passage. Having a CWCF is also being aware of "rates of passage:" height/weight rates, O2 rates, sterility rates, insurance rates, mortality rates, divorce rates...

And when people quote, "It takes a village to raise a child," you realize just how big your village is, and how very grateful you are to have so many caring and competent villagers on your side.

Samantha,

Regardless of all the hospital visits we go thru, and all the days that our days and nights get mixed up because you were awake coughing all night, always and forever know mommy loves you.

Kathie

I guess it can get worse

I am sick with a fever and aches (think it's the flu, and Samantha hasn't had her flu shot yet) the doctor doesn't have them in so this should prove interesting.
And my car, yeah when the timing belt broke it screwed up my engine...how lucky am I.
Samantha seems to be doing well and is not acting sick so maybe I can keep her far enough from me that she doesn't catch what I have.

Kathie

Can it get any worse??!!??

Samantha and I have both had the crud over the last week and then a stomach virus. Well, Samantha was feeling a little better this morning so I was on the way to take her to the Shrine Circus (I forgot I even had the tickets until Friday when I was discussing something else....how smart is that free tickets and forget about them), anyway we get 30 miles from the house and 5 miles from where we are going and the car just quits running, no stuttering, no warnings, no nothing...going 65 mph on the interstate and just dies....and now it won't start back.
I guess I get to call the shop Monday and see what is wrong with it and what that will cost figures...only 4 more payments and it would be paid off...
So any way Samantha started feeling bad again so we left the circus early and got in touch with a friend who could bring us home and got the car towed home, so now we just sit and wait out the weekend....Well Samantha is sleeping it out, I had to give her more meds for her nausea....Dog gone stomach bug and she was finally beginning to gain weight, maybe she won't lose too much while she is recovering from it.

Kathie

Fallen Behind

So I have fallen behind, but Samantha is out of the hospital and off of Ivs and doing well.
Kathie

Hospital

Samantha is in the hospital, however I cannot update blogspot from the hospital, they have it blocked on their network. Anyone that would like to follow updates while she is hospitalized please go to www.carepages.com and put in page name SamanthaFross.

Kathie

Off to ER for admit

I just called Samantha's doctors because she woke feeling horrible this morning so we are off to the ER for admit. I will update later tonight as to what they say.
Kathie

The Antibiotics

So, Samantha started her antibiotics last night, but guess what, her cough is still increasing. She has only had two doses of the antibiotics so hopefully with a few more doses she will start sounding and feeling better. She is taking advantage of the rainy weather we are having and sleeping/resting quite a bit, so that should help as well.
As things change one way or another I will let yall know.

Thanks for checking the Angel
Kathie

Call to the Dr.

So I called the doctor today because Samantha's cough wasn't getting any better. She last cultured enterobacter which is resistant to Cippro, so I will go to the pharmacy tonight to pick up her prescription. Let's hope this knocks out the yuckies, so she will feel better.

Kathie

Trying to Stay Out of Hospital

Samantha has developed a nice little cough. Breathing treatments are being given every 4-6 hours trying to keep this under control and trying to stay out of the doctors office and hospital. She has been doing relatively good, she has been off of IVs for right at 6 weeks so I am hoping she is not going to continue the 6 week thing...I am really waiting on the time when she can consistently go 6 weeks without IVs.
I will update if/when anything changes.

Weight

Samantha's weight is slowly beginning to creep back on finally. She has a little bit of a cough going on but she is holding her on and doing pretty good. She goes back to the doctor the first week of September as long as she stays healthy and holds her own between now and then.

My car

I finally got my car back yesterday and the a/c works very nicely. It is so nice to get in my car and be able to keep the windows rolled up and ride down the road in comfort.
Samantha seems to be holding her own as well.
I will update if there is anything else to report.

Kathie

Nutrition Visit

I have to make a tweak here and there in Samantha's feeds, but overall everything stays the same and we follow up in September to see what happens next.
On their scales Samantha gained 3.2 ounces in a month. Not bad but not good either being that she has lost on my scales.

Kathie

Weekend Fun

The weekend is almost here and I'm traveling in a different car this weekend. Yeah for me. My car is in the shop...Maybe I will have A/C when it comes home. I already miss my baby car because it gets such good gas mileage.

Samantha goes to nutrition tomorrow to check her weight and make sure she hasn't dropped too far after having the stomach bug here a while back.

I will update later about the nutrition visit, hopefully tomorrow but definitely by the end of the day Monday.


Kathie and Samantha

Trying to stay out of the hospital

Not a whole lot going on in Samantha's world. She is fighting a little bit of a cough so albuterol and vest has been bumped up.
The most irritating thing going on right now is Samantha lost some weight when she had the virus the other week, and she is just not gaining it back so feedings have been pushed up from 4 cans of formula a day to 5 cans. And we follow up with nutrition August 1 for a weight check and to evaluate the situation to see if anything more needs to be done.
Lets hope she can kick this cough without another visit to the hospital.
More updates if anything changes.
Kathie

Samantha was sick and VBS

OK, I know I am running behind again, but we have been incredibly busy with vacation Bible school all week. On Tuesday night I had to call an ambulance for Samantha because she was coughing and gasping for air. Turns out it was just a virus and Samantha was sent home, followed up with CF the next day and was able to continue VBS. She "graduated" last night and had such a wonderful time while she was there.

Kathie

I have been a little slow, sorry

Samantha came off of her IVs on Wednesday and seems to be doing very well. We went to St. Augustine to see the fireworks and Samantha had a blast with her brother. Not much time to blog, I just wanted to update everyone and I hope everyone had a happy 4th!!!

Today's doctors visit

When Samantha finishes the IV medicine that we have at home tomorrow night she will be finished for this round. She will then go back on the inhaled Gentamycin. Otherwise she continues to do well. We are working on the weight thing some because it is being a bit stubborn, but overall very good.
Kathie

Samantha's Photo Shoot

Samantha had the most adorable pictures taken today getting ready for her fashion show in December. They took one picture of her in just a black turtle neck and jeans. The other picture is based on a circus theme and she wore this green dress with black and white (leopard like) straps with a pomeranian in a chair beside her. She was the dog trainer of the circus...As soon as I get pictures I will post some.
Otherwise she seems to be doing well.

Kathie

Update on Home IVs

Samantha will be on IVs for another week and we follow back up with the dr on July 1. She still has occasional crackles in her right base, and some night cough but she is showing improvements.
Kathie

Appointment

I had the date wrong on Samantha's appointment, it is tomorrow morning instead of this morning.
She seems to be improving, still has a pretty crappy night cough, but is sound much better during the day.

Doing Better

Samantha seems to be doing pretty good. She has been playing hard the last few days, while doing her home IVs which is always a good sign. She goes back to the doctor on Monday to see how much longer she has left on the IVs. The schedule as of now is to be on them through Wednesday.

Getting Started

I am trying to get this started and may change over to this from Care Pages. For anyone that wants to see Samantha's history go to www.carepages.com page name SamanthaFross.