Samantha has B. Cepacia

The doctor just called and gave me the final report from the lab and Samantha does have B. Cepacia.
Kathie

Update 3/31/2010

So it has been a rough and busy day today. Started out with Samantha getting a strange rash on her face and one arm, that we don't have a clue what is causing it. Then she spiked a fever of 105F and her resperations and heart rate shot up. After a bolus of IV fluids and some Motrin her vitals are back to normal and her temp was at 100.4 about an hour ago. She still has the rash though it hasn't really gotten worse it does get darker when her temperature goes up.
Kathie

We are HOME

We finally got to leave the hospital yesterday at 3:00. So glad to be home. Her oxygen sats stayed at or above 93% Wednesday night. Absolutely wonderful news. THANK YOU for all the prayers.
Off to be lazy for a little while before I put everything up from the hospital
Kathie

Update 3/17/2010 GOOD news

So when the doctor finally came around today the decision was made NOT to do the echo cardiogram. She did not require oxygen last night and her numbers started creeping upwards this afternoon (a GOOD thing). She started staying at a fairly steady 95% and bouncing upwards to 97% where she was staying 90-92% and bouncing to 94%.
If she has a good night tonight and all of her medications get the authorizations that they need she will come home tomorrow.
Thank you so much to everyone for all the prayers. Once again my Angel has been touched by God and pulled through without a trip to PICU or any additional diagnoses.

Please remember that generally no news is good news, so if you don't hear from me for a day or two it is because Samantha is home, and we are sleeping....

Loves to All
Kathie

Update 3/16/2010

Samantha had to have oxygen again last night while she was asleep. So the doctors have said that if she needs oxygen again tonight that they will want to do an echo cardiogram on her to check for pulmonary hypertension. Don't ask me what all this means because I have not yet gotten it all figured out other than she may have to come home on PRN (as needed) oxygen... Just another page in this very long story for my little girl. The doctor showed me her x-rays from last month and this month and if there was any change to speak of it was just a tiny bit in the right lung, as the doctors have said this whole visit, definitely nothing to match the numbers that she has been having.
Physical therapy also said that she is still very winded and not bouncing back like she normally does. The PT said that normally by this time (Day 10 inpatient) that Samantha is normally running laps around the PT. With her just sitting in bed playing a calm game she is only staying at 92-94% and she is normally 97% or higher.
I think it is time for many more prayers for my baby girl.
Here is to hoping the doctors can figure out what is going on and get on top of it.

Till next time
Kathie

Update 3/13/2010

Ok, I know I have been running behind on updates but overall no news is good news. She has been doing really good and running me ragged.
Her Vitamin D was low so she is on a Vitamin D supplement in addition to her ADEK. Her sputum culture showed ORSA and Pseudomonias. Her pseudo is resistant to pretty much everything and only half sensitive to Tobramyacin, so they are checking her sensitivity to the inhaled antibiotic on the market, Azteonam (AZLI, Cayston), it was just approved by the FDA earlier this month. So keep your fingers crossed that it will work for her.
Up until last night she had been totally off of her oxygen since Thursday I think is was up until last night. Last night though she had to go on 1.5L oxygen with nasal canula because she was dropping to about 87% when she was sleeping and the dr wants her at 90% or better. This morning she is on 1L with nasal canula and holding 91-93%, so she had a little bump in the road but nothing major.

Thinking about Miss Mel this week, we miss you but know that you are watching us from above.

Take care till next time
Kathie

Update 3/9/2010

I am very happy to say that Samantha is off of the 50% oxygen by mask. She is down to 2 Liters by nasal canula and holding about 93% oxygen saturation. She was also able to avoid a trip to PICU (thank goodness).
That is really the only news right now, but it is really good news.
Kathie

Update 3/8/2010

Sooo...last night was a rough night her oxygen got increased from 40% to 50%, the max she can be on and stay on the floor. Just in the short amount of time it took for her to go potty without her oxygen last night she dropped to 79%...so we had to get extension tubing.
The idea is bouncing around of possibly putting her on a CPAP which would result in her going to PICU as well. The doctor went down and talked with the PICU doctors and they are going to come evaluate Samantha to see what they think, but it doesn't seem as if they will come up here and then whisk her downstairs. It is more of a thought that they will evaluate her so that they are familiar with her in case anything else changes today or if she gets worse tonight.
Despite how she sounds and what the numbers say, her chest xrays (3 of them within a 12 hour period) look remarkably good, so we are all a little baffled right now.
I will update when I know more or if anything changes.

Kathie

In Again

Well Samantha is in the hospital again. Not so good sats and she had some blue tints with her nurse last night, so Samantha got a trip in the ambulance. She is on oxygen, and preliminary results are showing that she is growing multiple bugs in her sputum, but that is all that is showing right now.

On a better note, last weekend she went to Monster Jams and saw all the monster trucks, and yesterday she and a few other families in one of her organizations had a private meet and greet with Tim Tebow. Pictures will come as soon as I get a chance
Kathie

Mission Accomplished :)

I am very happy to inform everyone that this mission has been accomplished. Samantha is going home today!!! She kept her O2 numbers up over night and the dr. is very pleased.
She will do another week or two of IVs at home and intensive breathing treatments and CPT, but it is well worth it.
Kathie and Samantha

Update 1/28/2010

Samantha is improving. She has not been on oxygen since yesterday morning, but she did desat overnight to 88%. Dr wrote orders today that if she desats below 90% to put oxygen on her whether she is awake or asleep to get/keep her at 90%.

Before she can come home she has to maintain over 90% day and night on her own with no help...

Maybe we will know more tomorrow.
Here is praying for numbers above 90%.

Kathie and Samantha

Update...Samantha still in Hospital

Samantha is still in the hospital, and Friday is not looking very good as a discharge date at this time...She is still requiring oxygen off and on and the doctors want her totally off of oxygen before she goes home. Come Friday if she is not significantly better they will do another chest xray to see if there has been any change.
Now they are saying possible discharge over weekend, but they said to take it a day at a time and not get our hopes up until her oxygen sats come up and stay up without the oxygen.
Kathie and Samantha.

Update on Samantha

Samantha is doing pretty well. She is off of oxygen more than she is on it now, which is good. She still needs a little help on occasion, especially when she is sleeping. The doctor is talking like she should go home Thursday evening or Friday, just depends on when she holds her numbers herself without the added help of oxygen.
She is on steroids and will be for a little while, this is the first time she has been on them since 2007, but they think it is more of an asthma component instead of all CF, this time.
She is slowly putting back on some weight that she had lost, but I am glad to say that she had enough weight on her that the loss wasn't a huge issue this time.

Best to all, and I will update when I know more.

Kathie and Samantha

Back in the Hospital

Soooo....Samantha was admitted to the hospital last night, or I guess I should say early this morning. We were in the ER by midnight, with Oxygen levels of 87-89% and when we got to the ER she was 89%, so she was put on some oxygen to help her out and a nice collection of meds. She was given a double neb., to help open her up, some steroids thru her port and an IV antibiotic to get her started.
Based on her last two cultures she will be taking 3 IV antibiotics and 1 oral antibiotic, plus the steroid until her goopies from last night come back with cultures.
Her chest xray actually looked the same if not a little better than the one in September so the Dr. is shocked that her numbers look the way they do, but she is working some to breathe.
She started out on 2L oxygen, and was able to reduce to 1L for a little while, but is back up to 2L and is satting 93% right.

Please pray for the girl to get better. She is missing her Barnham and Bailey Circus trip today, that she had given to her by Community Peds Care, so let's hope she can get well soon enough to be able to go bowling next Sunday with Starlight.

Loves
Kathie and Samantha

My Baby Girl is Growing Up!!! Making Mama Proud

So, Samantha is still doing fairly well. Cough is beginning to increase a little, and on occasion she coughs so hard that she has problems catching her breath, but nothing horrible and her nurses say she is still sounding pretty good, with some wheezing and a few more coughing spells at night than normal. Right now it looks like she will not need to visit CF clinic before her scheduled appointment later this month.

On to her growing up on me....She knows the order of her nebulized meds and goes to get the right cup for each one (I have them numbered and labeled so I can make sure nothing gets forgotten), she will then go get the respective med, bring it to me for me to check and make sure it is right and then she puts it in the neb cup and hooks it up to the nebulizer and away she goes with her meds. She won't hook up her vest on her own because she doesn't particularly like it, but she will do her other forms of CPT or come ask me to beat on her if she is really having issues getting her lungs cleared.
I never expected her to take this much control over her care at 6, but I have brought her up knowing what needs to be done when, so if I am not in her room at the hospital when she does treatments she knows to ask questions (and boy does she ask) so that she knows what is going on.

Samantha Mommy loves you and is so proud of you. Hope you continue to stay so proactive with you care for the rest of your life! :)