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