August 3, 2010

 

Hannah has had a rough year so far.  Hospitalized in February for an intestinal blockage and a lung infection she has continued to struggle all year with her lung health.  As usual, she grew staph at her last clinic visit and her pulmanary function dropped 22%.  Probably should have ended up in the hospital but we gave her antibiotics instead.  It was back up 16% last month and now she is visiting the CF Doctor every 6 weeks.  She is also visiting the "shrink".  I think she is in denial.  She doesn't want to check her glucose, take insulin, meds and I feel like she is taking years off her life.  It is a constant struggle to get her to do her routine.

 

She did play softball this spring even though she was not on top of her game.  She was often not feeling well.

 

Hannah will be 10 on August 28th and if you look at the statistics she has already lived 1/3 of her life.  We need a cure.

 

August 20, 2010

 

Hannah has been suffering from high glucose readings for over a week.  Some over 600.  Something has to be wrong with her.  We went to the CF Doc on Wednesday her PFTs were down a little.  She is still growing staph in her lungs and the chest x-ray shows scarring that wasn't there last year.  This disease stinks.  You get to watch your child deteriorate every year.

 

 

Hannah's September stay at Children's.

September 10, 2010 day 9 at Children's.  High glucose, blocked sinuses, partially blocked intestines and significantly reduced lung infection.

Hannah is growing a nasty bug called stenotrophomonas maltophilia.  They hope they can kill it with strong antibiotics.

 

September was just a blur.  Hannah was in the hospital from 9-1 to 9-21 and then her intestines backed up so she was back in the hospital on 9-27 and came home again on 10-1.  Sinus surgery on 10-6 and finally back to school on October 11.  Oh no, CF is not finished with her.  The throat culture they took on 10-5 is growing pseudomonas.  I can't believe it.  There is no doubt that she picked it up while she was in the hospital.  Now I wait to hear from the clinic.  IV or inhaled Tobi???  I'm leaving for Dallas Sunday.   UGH this disease stinks!

 

So inhaled Tobi it is!  Let's add another 30 minutes to her treatments.  Here we go.  First she takes albuterol for about 15 minutes while she is doing the vest, then hypertonic saline for another 15 minutes and after everything is completed she takes Tobi for 20-30 minutes.  Add pulmozyme at night for 15 minutes.  Have I said lately how much this disease stinks?  Poor girl, when does she have time to be a kid?

 

Click on the subpage below to read Hannah's take on CF.  She wrote it for school.

 

 

January 11, 2011.  Happy New Year Hannah is in the hospital already.  Should be a quick stay, lungs are in great shape finally but the intestines are backed up again.

Hannah was in the hospital December 6 thru 9, 2011 for yet another intestinal back up.

In February 2012, Hannah had two surgeries on her sinuses.  2/13 & 2/27 Her left sinus was so clogged, swollen and full of polyps they had to give her some medication to help reduce the swelling and then go back in on the 27th.  Poor girl was miserable.

Hannah was hospitalized August 13 thru the 15, 2012 for diabetes related issues.  Extremely high glucose reading.

Hannah had another sinus surgery in October 2012 and is scheduled for her 5th in June 2013.