Isn't this picture just too precious? This is my new favorite. I took this picture a few days ago.
Well Ava seems to keep us always popping. Yesterday they thought they saw a bleb on her xray film. Now I'm still asking questions and learning so bear with me. This is when a pocket of air in your lungs gets overly blown up and doesn't deflate. I have never heard of this before. They thought she might have had this at birth because of her congenital diaphragmatic hernia. If she is not on a vent then this would never bother her because she would never get pressure breaths. But I was very leary for the simple fact that CHOP would have caught this. So "if" she did have this they couldn't place another chest tube in, because it would not help since it is IN the lungs.
See Ava has an air leak in her chest tube right now. Her right lung is still partially collapsed on the bottom. (I think this is not a lung thing it is due to the fact that she is still really swollen inside and her right lung just can't expand. When they fix this her lung will pop back out. Just MY thinking.) Now her left lung is expanded a little too much. When they give her pressure breaths on the ventilator the air goes to the left lung first and then the right lung doesn't get the full strength of those breaths for two reasons. One she still has a chest tube leak and the air is escaping through the tube. And number two the left lung is over expanded.
So last night they did a CT scan to rule out the bleb. It was not a bleb like we already knew. The decesion was made that we just leave it for now. Their hope is that with lowering her vent settings she will heal on her own. I don't want her to have 2 chest tubes. I hate that she has the one. The tell us that chest tubes hurt really bad. The tube itself is huge. I try to tell myself all this stuff has to be done in order to save her life. If I would start dwelling on everything I would go insane.
The long range plan is to do surgery on her the first part of this coming week to put on another patch covering her belly. This one will be very strong and will let her be able to get up and move without the worry that her intestines will fall out. The patch will be made of more mesh with small holes in it and a sponge suction at the top. (Her surgeon is thinking her intestines need time to heal before they go in there again.) Next they want to get her off the vent. Get as many tubes and IV's out of her of course leaving the picc line. They are not going to let her eat but he say she will probably be able to drink.
Now in my mind I'm thinking how in the world do you keep a two year old from eating? I'm still boggled by this one. So if everything goes well and she gets better we could "possibly" Take her home before her major surgery. See this is me thinking extremely positive. They never told us whether she would have to stay here the whole time. We HOPE and PRAY she will find her "new normal." We know that IV drips will help maintain her weight and growth.
We have a long way to go. This process is going to take a lot of time. Her little body seems to be extremely tough. Yesterday they lowered the vent settings to 40 O2, Peep rate 8, SIMV rate of 15 and her tidal volume of 85. We could tell that she loved to breath over the vent instead of it working for her. We saw an immediate drop in her heart rate and her stats were 99 and 100. I have told them since day one, Ava wants the power and the glory. She wants control of some of this bad situation. She thrives on that fact.
They are already thinking of weaning her off the Versed and Diladid. Last night they started her on Methodone to transition her off the Narcotics. I hope they are not going too fast. I think part of our problem with the first extubabtion here at Iowa was they weaned her meds in 6 hours to get her off the vent. I was not comfortable with that at all.
So at this moment she is relazing. Her heart rate is super low for her. It is 95 and she is saturating 100. I'm a stickler at lowering the O2 is she doesn't need it.
The Iowa Hawkeyes have a home game this morning so we are anxious about what goes on here. The stadium is right across the street from the hospital here. I was going to go home last night to get the girls and to get a few things we needed but the nurses told us it would be a nightmare to get a parking spot once we left. So I decided we will do it later. I'm sad the girls can't come today but they are staying with my Mom and Dad for a few days. My mom lets them get away with anything. She always has something to do for them. Lexis likes to sew and my mom is trying to teach her things. Emeline did have a cough this week so it might be better that we reschedule it anyway.
Well that is about it for today. We are planning on a nice relaxing day. They started her o a pretty high dose of Methodone so she will probably sleep for a few days. Brian did say she woke last night and opened her eyes. Oh they also started her on a patch called Clonidine.
Love to you all!