Ups and DOWNS…..

Ava loves to stump us. Last night she started getting the tipped head, which means her tummy hurts and she feels very sick. I hooked her up to the feeds at 9:30 pm and by midnight she could not tolerate the feeds. She didn’t throw up but she woke crying and holding her stomach. I lowered the rate thinking that might help. (It was already set at 35 so 25 was a very slow drip.) At 12:20 I had to shut it off. Her stomach was making rumbling noises so bad it frightened me. I then set her to straight drain because I knew she had a lot of extra air in there causing this problem. Finally at 3 I decided to give her a dose of Flafyl in case her body needed it sooner. I also gave her Tylenol and Simethicone drops for the gas. She felt better then. She woke and seemed better so naturally I was hoping this was just a fluke. She ate about 6 bites of egg and drank some tea. I decided to go easy and be safe by hooking her up to Pedialyte feeds to keep her hydrated. THIS is one main concern when she doesn’t tolerate feeds. She was just lazy all day. We went back to sleep at about 10 am and slept until 1. (As we both got little sleep the night before.) She peed fine and she had a bowel movement at about 2:30 pm which included a happy dance!!

She didn’t eat as well as she had the day before but still pretty decent for her. Her diet consists of noodles, all kinds, and eggs.  I had to take Lexis and Emeline to the eye doctor at 3:30pm so that left Brian and Ava alone at home. She loves her Daddy. They made a huge tent and then she feel back to sleep again. We came home and I made gollash, which is another one of her favorites. She ate about a cup of that! I decided to try the Gentomyocin today to see if that might help some. I feel like we are falling back into the obstruction mode. Her tummy is again huge and making such loud rumbling sounds. She led Brian into the kitchen at 9:30 tonight and wanted him to make her an egg. He did. Then about 30 minutes later all the egg came back up. It didn’t smell like throw up only eggs. I’m praying that this new antibiotic will be the answer. I have one hospital bag packed. I hate having to be on guard. If she continues like this I might want to get another central line so I can care for her at home. It was much simpler when I didn’t have to worry about her losing weight and getting dehydrated. Again that is why we go to the hospital….oh and the thought of an obstruction. It is crutial that she gets medical attention if she is totally obstruction because she will loss her bowel if the blood flow gets cut off. So super scary. We are on high alert. AND I hate thinking about all the germs in the hospital although I don’t think the “big world bug” has hit the UNI yet. Each time we go to the hospital is a big chance we leave with something else. Ask any of the nurses, before Ava is allowed in the room I grab the wipes and wipe everything down. I just can’t and don’t trust anyone.

Tonight I am not even attempting feeds. I set her to drain for about a half an hour then gave her medicines. I might see if she will tolerate Pediayte but then again drain might help relieve some pressure. She just has to hurt with the cramping her intestines are doing. I am afraid of her losing weight. We spent so much time building it up to 27. She is now 25. I really thought we could be at an up for a while. I still believe God can heal her through the medicines.

Thank for your love, support and prayers. I told you to hold on because this is a long and scary ride. Not very much fun on the bad days but the good days are SO worth it!

~Terri