May 21, 2010

We are Outta Here!

Last Friday we went to the Doctor thinking she would give us meds and instead we landed in the hospital.  But it's been a very good thing in a lot of ways. 

They were able to tell Manny needed oxygen EVERY time he sleeps (even cat naps) ... that would have taken us forever and probably a sleep study.  This would have continued his heart compensating and could have damaged his heart.  Instead, they were able to do a verified need for oxygen and a pulse ox machine at home. 

They were able to find the news of the past genetic tests we've been trying to get for 6 weeks. 

They were able to do an MRI and give the diagnosis as well as a blood test to (eventually) determine the subtype. 

They were able to do an EEG and see he is having no seizures. 

All of these tests would have taken FOREVER as an outpatient and instead, we moved right to the front of the line.

Because we were in the hospital on the Respiratory floor, they had THE docs and nurses and respiratory therapists who deal with chronic kids.  We were able to get the specialists who have seen this condition before and know how to proceed. 
While here, we had an amazing Doctor who fought for us.  He went to bat for us with numerous people.  We're told he's funny ... but we've only experienced him being direct and honest (which I LOVE).  We've heard he YELLED and SCREAMED at the nurses (two times).  You can tell and Manny wormed his way into this Doctor's heart. 

We also had many wonderful nurses.  (Along with some who didn't "get it".)  But one that stands out is Dana.  She was there when the diagnosis was being delivered.  She was there through the next two days as I was inundated with a plethora of people.  She was kind to me as I found my footing again.  And she LOVES my kid! (Thanks Nurse Dana ... we won't forget you.)  

Thanks to everyone at St. Joseph Hospital for taking such good care of us. 


  1. Blessings to you. Hug Manny for me. Remeber I am
    here to listen anytime.

  2. Thankful that you and Manny are at home. Still praying for God's will for Manny and your family.

  3. Continue to think of you keeping you all in our prayers.