A lot has happened since my last post. Ava has been inpatient twice in the last month for cyclic fever and hypoglycemia. She also had to fast for an echo (she's been having tachycardia), which didn't go well. She can't fast with her blood sugar plummeting. Pedialyte doesn't help, it doesn't have enough sugar in it to maintain glucose levels. We checked into cardiology already low so the cardiologist did the echo himself without sedation and she was sent to the ED for critical labs and a glucose of 38. She has to be followed by the cardiomyopothy clinic.
Fast forward 2 weeks .... She was discharged last night and will go back in on Tuesday for fluids and port placement on Wednesday. She can't fast for surgery, so fluid are needed. She doesn't have access anymore. It literally takes hours to get an iv in and it's very painful for her. They have to dig, try multiple places, etc... A port will help with this.





5 comments:
Poor girl! The port has been a life saver for us and so worth not dealing with several IV pokes.
Hi Precious and special Ava!
My name is Jenna and I came across your site. I am sad to hear u have been in the hospital twice this month. I am in the hospital lots too, I practially live there. U are an inspiration and a brave courageous fighter and a hero.
www.miraclechamp.webs.com
it's really nice post..
Hey, My name is Amy and I came across your blog randomly..I am an RN, right now working with older sick people but hoping to go into pediatrics soon. I am so inspired by little kids and how brave they are, especially when they are "medically fragile" (I saw you wrote that, I love that way of saying it!). I hope to work in Peds Oncology someday. But I just wanted to let you know that I'm praying for your family. Although I may not know you guys, I have seen how difficult it is to have a child frequently in the hospital and I really feel for you.
I took care of a 63 year old woman today with CP. I also used to babysit a girl with CP. Oh, what a joy they are. Every single person with CP that I have come across have absolute hearts of gold. I am sure it is the same with your daughter!!
I'm so sorry about your hospital visits. I hope things get better soon!
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