My loves

My  loves
Our family

Monday, January 30, 2012

Bloodwork results

Christmas 2011 our 3 daughters and 3 grandbabies
I talked to endo last week and she said all of Hannah's pituitary hormones, growth, female, cortisol, puberty and diabetes are all within the normal range.  So she was cleared for surgery then.  I let the urology nurse know and she said she would talk to the dr.  So I called again on friday and they said they were waiting for the nurse to talk to the dr, later she emailed me to say he wanted a letter from the endo clearing her for surgery,.  So, I called endo and they said they would take care of it..I just keep wondering why the dr didn't just call the other one himself, they are both at the same hospital :(  she did say they were already scheduling into march so no quick dates like I wanted.  So, now we are back in a waiting gets very frustrating!  Please pray they can get this all straightened out quickly and get it scheduled.  And pray that medical assistance will approve the two days bowel prep in the hospital.
  We also bought a much needed new(to us) van a couple months ago, and it needs a lift in it.  We decided not to move the old one into the new van, it has been moved too many times.  We have applied for some grants for financing but haven't heard anything from them yet.  We really need to get the new one on the road, we have been having a lot of trouble with the old van lately.  Please pray we can get funding for the new lift, I would really like to start driving the new one :)
 A friend of ours said yesterday that nothing ever goes easy for us and he is right :(

  Thanks so much for all the continued prayers for us

Monday, January 16, 2012

Hannah is sick

For over a week Hannah has had a lot of secretions but by thursday she had a lot more, over the weekend, they have started to look infected.  I am waiting for a call back from pulmonology to see if we should start her on tobi nebs for infection.  After her 4months of c diff I am nervous about putting her on an oral antibiotic.  Tobi is an inhaled antibiotic that works on the trach secretions.  She has been running   a slight temp off and on...heart rate and O2 level have not been too bad.  It's been a long time since she was sick, I can't even remember the last time.  I got it from her but don't feel too bad, just glad I got it from her instead of her getting it from me :)
 Still waiting on the bloodwork results form endo.   Will post more when I know more.  as always thanks so much for the continued prayers for Hannah and our family.

Sunday, January 8, 2012

Surgery postponed

 We saw the endocrinologist on friday.  She said that she was going to make our life a little more complicated :(   she did but I really liked her.  Hannah has an underactive thryoid so she put her on synthroid.  And then she told me that she has a problem with her pituitary gland having low levels.  They are concerned about her cortisol levels.  I am taking her for bloodwork first thing Monday morning, it has to be done at 8am.  Endo and urology decided there was too much risk for her to have surgery not sure of the cortisol level, it could cause a lot of problems, it could have contributed to her kidney failure during her spinal fusion but there is no way to know.  So we are postponing it.  That will give them more time to pre auth the two days of bowel prep in hospital, they are not comfortable letting us do any of it at home with her history of low sodium, calcium, etc.
  We saw rheumatology too.  They examined her very thoroughly and didn't find anything to support the high levels of rheumatoid factor, they said it 's not unusual for a girl her age to have those levels.  So, thankfully we don't have to add them to our specialist list.  They were the 5th new specialist we have seen since her spinal fusion :( 

Wednesday, January 4, 2012

Surgery drama :)

Hannah's mitrofanoff surgery is next wed, 1/11.  She is supposed to be admitted 2 days before for bowel prep.   Yesterday morning the urologist called and said that the allergist didn't think she should have surgery until she was seen by Endocrinlogy  and Rheumatology.  I panicked  and he said he would call dr M, the medically complex dr.  I called his office too and also called allergy.  the allergist that made this decision doesn't work at dupont anymore.  After a lot of phone calls, they made her appts on friday with endo and rheum....amazing!  So I was talking to urology and telling them about the appts, she mentioned hannah was to be admitted on tuesday! I found out that her insurance (medical assistance) doesn't think she needs 2 days of bowel prep!   today another lady called from urology and said she was trying to find out what was done today, the dr was going to do a peer to peer review about this.  Because she is also a nephrology patient they want to be careful how they do it.  I am still praying MA comes through and lets her have the 2 days, otherwise we are going to have to do some of that here :(   The dr called the pre auth # and they also did a letter of necesity...please pray they can work it out.  Hopefully I will know more tomorrow.
 When she had bloodwork done for allergy, he did testing for her thyroid and auto immune disorders, she has high thyroid and ANA she must be in a lot more pain that we realize. I am a little nervous at what they are going to tell me at the appts.