2 years with a trach.

August 10th will be the 2nd anniversary of Lydia's tracheostomy.  I think the trach may be the hardest thing we have had to do.  We knew the heart had to happen, the feeding tube was tough to accept but Dr. Vaughan was amazingly convincing and supportive, but the trach was different.  

Trach = Vent in my mind, which is taking your child home and turning your living room into an ICU.  Trach meant something visible all the time, something sensitive, fragile and delicate.  We just wanted to bring Lydia home.  Lydia was okay around the end of July and early August.  Then quickly began acting more ill and visibly looking sicker.  She was breathing like she was running on a treadmill and could never get off.    

We were set to go home July 31st or August 1st and be discharged from the PICU.  That alone should have been a red flag, no one discharges from the PICU.  Doctors switched and our plans foiled.  Dr. Tieves would not send us home and immediately started monitoring Lydia's carbon dioxide levels.  I was angry and curt with that woman for a week but at the same time I was forever grateful for whatever she saw going on with Lydia that no one else did.  Come to find out, it was the intern that tipped off Dr. Tieves that she didn't think it was safe for Lydia to go home.

We retested about everything under the sun to ensure nothing else could be done to help Lydia before a tracheostomy.  I met with ENT doctors and pulmonology.  I asked to speak to her heart surgeon and various PICU intensivists.  I remember one morning during rounds, Dr. Tieves said trach so nonchalantly and I exploded.  I get that they are around it every single day, but I'm not, this is my baby, I don't want anything else to happen to her.  I remember saying something along the lines of, "sure, just cut another hole in her, as if she doesn't have enough already."  

http://lydiaroseriggs.blogspot.com/2015/08/the-scariest-word-in-picu.html

Dr. Tieves didn't give me any sympathy and in hindsight I appreciate that.  That was the day I heard from pulmonology, the home vent team, an ENT doctor, her heart surgeon and finally Sandeep, the resident in the PICU the entire time Lydia was in-patient.  I saw him more than any other doctor and he knew Lydia very well.  He always took time to come back and check on her and I and answer questions.  That conversation finally convinced me and I had to convince Dan.  It took us a day or two, all the tests were done on the 6th, we decided to move forward on the 7th and she got her trach on the 10th.         

http://lydiaroseriggs.blogspot.com/2015/08/tracheostomy.html

Look how sick she was.  These were from August 3 - 9.

And then it all melts away because this saved her life.  She went from this sick tiny little baby that couldn't breath to this chubby cheeked smiling firecracker in a matter of days.  These pictures of from August 11 - 16.  Totally different baby!

And now my big girl!