Well.. I wish I was able to give a good update... but as quickly as things got better then turned for the worse again..
fox came off the ventilator on sunday morning and was doing well... Monday night he was doing well enough to come out of critical care. It was amazing I had tears of joy when I saw him in his private room and I was able to be with him 24/7 I felt like I "normal" Mommy. I felt like I was taking care of him for the first time. Then on Weds I noticed something wasn't right he was working really hard to breathe. It was retracting each breathe under his ribs, he looked pale. He was desating into the 70's and back up into the high 80's they put him on more oxygen and thought that fixed it but my Mommy instincts were so strong. This wasn't my baby's norm he was struggling why couldn't they see what I saw?
fast forward after dinner time and Doctors coming to check on him because he was starting to turn blue... everything went kinda fast after that. They bagged him and started breathing for him they did an xray and it showed his left lung collapsed. That was it he was rushed back to critical care. My poor man... the whole time down he held on tight to me finger.
Fast forward to today.... I'll skip over somethings because it would take me to long to explain everything and I need to get back in to see Fox.
He has pneuomia and asperated his feed into his lungs he has another infection in his lungs as well and as of this morning his other lung collasped as in lower left lope. His echo he had yestday shows some problems with the pulomary arteries and they are going to wait a couple days to see how he does.. if they is no change he might have to have more surgery.
On top of all of this his newborn screening came back positive for Cystic Fibrosis.. with a 2.5% chance of actually having it.. this has nothing to do with his heart.. but seriously how unlucky health wise can he be? They want to rule it out because he did end up back on a ventilator but the doctors still don't think he actually has it. I have come to terms with the fact that I can't control his health .. I can't make him better... BUT I can and will make sure he gets the best help and treatment that he can get. Our whole family will be there every step of the way for him and I want to make every day and every momment count for this little man. I love him so much and I can't wait for the day I will get to take him home.
The first time we went to stepdown... we were up there for less than 2 days. I came back day two (I had to work part-time during the day, since I was sole breadwinner) and the nurse said, "She had a great day!" but I looked at her, and she was lethargic and I tried to sit her up and she was limp in my arms, with heavy retractions. The nurses acted like it was no biggy, but then her sats dropped a little, and I was freaking out, so she got a doctor. THey took a blood gas and xray and both were HORRIBLE. They called stat and ICU ran up and took her back.
ReplyDeleteMy point in my story is, NO ONE knows our babies normals like we do:-)
A mommy's instinct is rarely "off"... You stick in there and keep standing up for your little man! You done good!
Praying a ton for Mr. Fox! !!!
Oh Nikki you sweetheart fight for your little man and sorry to hear he is back in ICU xxxx
ReplyDelete