Friday I wasn't going to visit because the kids didn't have school, but the nurse called and said they were running low on breast milk so I grabbed Andrew and Morgan (dropped Tom at a friend's birthday party) and headed to the hospital. When I got there, I ran into her nurse in the hallway. Summer has had a bit of a stuffy nose so they wanted to run some tests to rule out any virus or RSV (the nasty creeping crud upper respiratory stuff people get every winter) that she may be coming down with. They moved her into isolation on the 2nd floor in her own room. It is really nice because she will not move again before she goes home...we have it all to ourselves :) She happened to pass all the tests without any signs of any sickness they tested for so they scheduled her to have her broviac catheter in this morning. The broviac is a permanent central line that will be used for her TPN. The surgeons went through her neck with a small incision, threaded it through the large jugual vein and came out the middle of her chest. Summer now has a piece of tubing that comes directly out of the center of her chest. The line can last for years, months, weeks, it just depends on how her body tolerates it being there. It's kind of weird to think she will have the tube there... she looks a little like a cyborg baby at the moment. The surgeons also installed a wound vac to her incision. They felt that it was still oozing enough that the vac would help. When I talked to her Attending doc, he wasn't happy it had been installed...just another tube and wires to have to work around! He told me not to be surprised if it was gone in the next couple of days...he didn't think it was necessary since her wound is healing fairly well at the moment. The labs they took this morning looked pretty good...Summer's bilirubin has been increasing (last week it was 7.8), but today it was down a little to 7.1. This is a good sign...it means the feedings are starting to help her body adjust and correct the possible liver damage. The more milk , the better....go Summer!
Summer has still been taking breast milk through her NG tube that goes down her nose and throat into her stomach. Each day the amount has increased by one cc and today she was up to 10 cc's an hour! Her doctors are very pleased with this...I figured out the math and it is about one cup per day at this point...1 ounce every 3 hours. That is about halfway to her ideal goal for food intake at the moment...yeah Summer! For the next week they will continue increasing the amount until she is maxed out. I am hoping she proves them all wrong and can take more than they think..it appears to be heading in that direction! :) We are still working with the binky trainer too and she loves it. Today after she came back from recovery from surgery, Summer was wide awake and acting very hungry. We got her all settled in and I gave her 5 cc's...she was very content and fell asleep.
I should start getting trained on her take home equipment near the end of the week or early next week. They also want me to spend 24 hours at the hospital learning how to care for Summer...home time is getting closer......I know I keep saying that, but it really is...I hope!
Aunt Debbie came to see Summer again today and brought her some dress ups :)
Little witchy poo
My cute little pumpkin!
2 comments:
Can I hold her first? She is so cute. I want to pinch those sweet little checks, Okay, no pinching. I love the costume.
My name is Rachel and I've been reading about your family. I am amazed at how our lives have paralleled this year. I had surgery with Dr. Chmait in March and had my boys in June. We still have our little former donor Walter in the hosp. He was born at only 14 oz to his brother's 3 lbs 14 oz. He recently had a set back and got RSV. I think and pray for you guys often. email me if you want to chat.
cpt.r.blake@hotmail.com
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