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