Joshua Coles's Journal
Written Dec 28, 2012 10:38pm by Stephanie ColesJosh was discharged on Monday, Christmas Eve morning. We were able to have Christmas at home with the whole family, and it has been so good to be back!
On Thursday we had our first appointment with the cardiologist. Josh had an echocardiogram, and everything looked normal. The fluid on his lungs looked much better, and he is now on half his original dose of lasics. His incision isn't showing any signs of infection, and we expect the steri strips to fall off in about a week so we can get a good luck at his incision. We will be back to see the cardiologist in a month and hope everything will continue to heal well.
Written Dec 23, 2012 6:33pm by Stephanie ColesOn Tuesday night we noticed Josh's incision looking more red and swollen. He had an appointment with the pediatrician the next morning and no fever, so I didn't feel the need to call that night. When the doctor saw it the next day she said it looked a little infected and prescribed an oral antibiotic. We started the antibiotic Wednesday morning, but on Friday morning it started oozing. I called the doctor and after coming in again for her to look at it, she thought he should be readmitted to UCSF. I called over to Josh's surgical cardiology team, and they agreed. I quickly came home, packed for us and the kids, and dropped the kids off at a friend's house. We drove to UCSF in the pouring rain, and after the cardiologist looked at his chest, they readmitted him. He wasn't running a fever, his white blood cell count wasn't elevated, and he was eating and acting normally. That led them to believe it might not be an infection, but fat necrosis: a buildup of fat cells under the skin. they started him on an iv antibiotic just in case. 2 days later and everything is still looking normal, blood cultures are still negative, so we are expecting to be discharged tomorrow morning with an oral antibiotic to continue just in case of infection. His incision opened up a bit when the fat was oozing out, so they put steri strips over it to close it up again.
When we were discharged on Monday he weighed 3.775kg. When we were readmitted Friday night he weighed 3.75kg. He was not gaining, and neither of us were very happy with nursing. He would eat for 45 minutes and wake up 10 minutes later screaming, wanting to nurse again for 45 minutes... He would do this ALL day. He would only sleep in my arms at night, and was generally just very fussy. I decided to try formula and see how he does on that, and its like a complete personality change. He will sleep in his bouncy chair now and wakes to eat every 3 hours at night, every 2.5 hours in the day. I had hoped to nurse him before he was born, but after we found out about his heart condition it didn't look like I would even be able to attempt it. So I am very happy we were allowed to try and he could get that comfort and nutrition in the hospital and the first few days at home. We are both happier now with formula.
We cannot wait to have our whole family together for Christmas.
Written Dec 20, 2012 8:55am by Stephanie ColesOn Monday morning we found out we were finally going home! Josh had gained weight over the previous 24 hours and they felt comfortable sending him home. They said we had to go home with a feeding tube, so they taught me how to place one in his nose and down to the stomach. Luckily I didn't ever have to do it again!
We have been home for 3 nights now, and josh sure is making up for lost time. He wants to be held all the time, even while sleeping! That along with wanting to nurse practically every hour has made for one tired mama.
Yesterday was his first appt with his pediatrician and she took out his feeding tube so we are not using it and he is gaining weight. He is now up to 8 lb 5.4 oz!
So proud of my boy!