WOW, It is just makes me sick to my stomach how quickly things can turn around in Kayleigh's situation. She had a really good day yesterday and all of a sudden, she started having one of her worst days ever today. It was not looking good at all and then a few hours later, things started going back to normal. It was so crazy!!!
When we arrived to the NICU this morning, we found out that Kayleigh had another eye exam and her ROP prognosis went from a level one to a level three in just a week. It looks like they are talking about doing the laser surgery to save Kayleigh's eye sight, but she will unfortunately lose her peripheral vision. I am not sure when they are going to do this, but it will probably be soon.
On top of that, our nurse (Marsha) who takes care of Kayleigh a lot noticed that Kayleigh was not acting like herself today, as she was very irritable and lethargic. She was having a lot of brady's and desats, where her heart rate would drop rapidly and her oxygen saturation would drop. She turned her oxygen flow up to 5 liters to try and help, but it wasn't helping at all. Her belly was getting a little bigger, but it wasn't any different than the past couple days so we weren't sure if that was the issue. She kept a close eye on her throughout the day and when she couldn't leave Kayleigh's bedside with out her dessating again, Marsha decided to order some tests to be performed on Kayleigh. Kayleigh started aspirating her feedings this afternoon and having more brady's/desats than ever before. Kayleigh has yet to aspirate because everyone would say she was tolerating her feeds fine. So for her to aspirate, Marsha knew something was not right. They did a CBC, blood culture and an x-ray. The CBC came back showing suspicious for an infection. The x-ray showed a ton of gas in her belly and the blood culture has not come back yet, which it usually takes 48 hours. The blood culture will determine what the issue is, but they stopped her feeds again and jump started some antibiotics to be safe. They were talking about skipping the CPAP and putting her straight on the vent because she was not doing well at all with her breathing. I couldn't believe how quickly things took a turn for the worse. They usually don't call us unless their is a problem and they had called us twice from the hospital to tell us she was having a rough time and what their plan of action was. The nurses were all completely shocked with what was going on and when you can pick up on that through their tone of voice, you know it is not good.
This craziness all happened this afternoon, but when we just called up there a minute ago (8:30), Kayleigh seems to be doing fine. WHAT??? I couldn't believe it! Our nurse tonight, Amy says she has seen antibiotics work wonders if they are administered quickly. Amy mentioned that she gave Kayleigh a bath (wipe down) and Kayleigh was very alert and wasn't acting irritable or lethargic at all. She also did not have any desats or brady's in the past couple hours since Amy started her shift. It was if there were no signs that Kayleigh was having any issues at all.
Can you explain that???? What in the world just happened? One minute, you are praying like crazy that you don't lose your little girl and the next, you are completely in shock to hear how well she is doing like nothing ever happened. I was so stressed out that I think I was having an anxiety attack in the car on our way home. I was short of breath and my stomach was turned upside down. I am so ready for this to be over and have Kayleigh home with us. This has certainly been one crazy day!
Please pray that Kayleigh will be okay and she will make it through all this.
The Freemans :)