We have had a few stressful days... Lilli is having a much harder time "adjusting" to hospital life {iv's ect} than she did when she was younger. She decided to spike a low grade {100.2-100.6} fever and it hasn't gone down for over 24 hours with continued Tylenol. They discharged us yesterday late afternoon in hopes that she would do much better out of the hospital and get a good night of sleep. Well... she didn't sleep so hot and was up about ever 2 hours complaining of something hurting :(
I'm going to be making a call to the Hospital in a few minutes to tell them she still has a low grade fever and see if they will still go ahead with surgery tomorrow.
Not sure if I wrote this already of not but Dr. del Nido said her recovery should be almost double that of a kid without heterotaxy. The Fontan will change the blood flow to her abdominal organs which will be an EVEN bigger adjustment with her organs being a "little different" and misplaced.
I think the coiling of all those veins really threw her body for a loop... it was her bodies way of trying to make things "right" and now it's like we said "nope, you were wrong". It just makes me worried at how intense the fontan will be to her system :(
It is beautiful outside today. I went for a walk to Trader Joes and it was super nice to get some fresh air and exercise. Boston {Brookline neighborhood specifically} is BEAUTIFUL! I would love to live here.
Please keep her in you prayers... she is such a little angel. Right now she is playing doctor with all her toys :) LOVE that girl.
