Friday, 8AM---"Finally got to hold my sweet girl last night for about 45 minutes. It went better than the first time Brett held her, but she was also on stronger pain meds. I sang some of her favorite songs to her, which she loved---her eyes were closed, but when I got done with one song she would strain them open to make sure I was going to sing another one:)"
Friday, 2PM---"Today was only slightly discouraging. Emri's lung x-ray this morning showed her left lung looking slightly better than yesterday, but the lower lobe of her right lung has now collapsed as well. She is on an even higher flow of oxygen now and we are trying to move her around a little more in hopes that the lungs will open back up. Her stomach is still very distended-just hard as a rock. Her nurse/doctor team here is trying to figure out how to solve this. We got a visit from Dietz today which was wonderful. He was pleased with how she looked-but a little concerned with the stomach issues. We are still chugging along---but it's hard to see our sweet girl so very, very uncomfortable and desperate to feel better. It's next to impossible to explain to a 2 year old why they are needing to go through so much pain. Praying for quick healing for my little hero-and that we may see her sweet smile light up the room again soon."
Friday, 5PM---"We are getting another chest x-ray soon. Emri's breathing has sped up and her O2 levels are slightly down. The doc is saying that if a higher O2 flow doesn't work, and if she won't tolerate a mask, we are going to have to talk about a ventilator. Please pray that this doesn't have to happen. I would really just love her lungs to inflate...right now."
Saturday, 12PM---"Emri just got finished with some chest PT-they used a pneumatic tamper to beat the left side of her chest in hopes to help open up that lung...and she LOVED it. She cried every time they stopped the machine. She is also on high flow (20) O2 and has been all night. The chest x-ray this morning showed no change in lung status. She is currently getting blood because her hemoglobin was super low and they are hoping it helps her get stronger. We are going to try to move her around a lot today in order to get her to breathe deeper for those lungs. We need her x-rays to start looking better so there won't be a need to put her on the ventilator. Thanks for all the prayers and please keep them rolling..."
Saturday, 6PM---"In shock right now---we just got a package in the mail from a 4th grade class of Sydney, a girl who is also affected by severe marfan syndrome. In the package were 17 of the sweetest cards from the kids and an Ipad...an Ipad. What a gift! Can't tell you how completely spoiled we feel right now! Emri is going to have so much fun playing games on it and talking to her Grandma, Grandpa, Aunts, Uncles and cousins on it's camera!!! THANK YOU! Slightly speechless- and that doesn't happen very often. "
Sunday, 3PM---"This morning was encouraging...but then about 3 hours ago things went downhill once again. Emri's lung x-ray this morning looked great-the left lung looked just about normal again and the right lung was completely clear. The x-ray this afternoon, however showed a pnuemothorax on the left lung. I have always been under the impression that a pnuemothorax meant collapsed lung-but it is actually an air pocket outside of the lung that can oftentimes cause a collapsed lung because of the added pressure to the outside of the lung. Emri now has to have a mask on with full oxygen for the next 6 hours until we x-ray the chest again. I have no idea how oxygen helps this situation...but they tell me it somehow does. Emri seems frustrated and discouraged---she doesn't seem like a 2 year old, she seems like a 12 year old---like she understands everything the doctors say and know this is another major setback. I feel for my sweetheart and just desire some relief for her, even if it means one more line being taken out, or a break from having something on her face. She is terrified every time a new person comes in the room-she just knows it means more pain and discomfort. Right now, all she wants is to hold our hands and watch Berenstein Bears, so that is what we will be doing for the next 6 hours. Please pray with us for some relief for our sweet girl.
Here she is with her brand new mask, watching her favorite family of bears."
Here she is with her brand new mask, watching her favorite family of bears."
Sunday, 9PM---"So...God is hearing the prayers across the nation...over the seas! We just took this picture of our sweetheart. Don't know if it is a short little break she is getting form her pain and discomfort...but it's a break none the less! She is singing songs, smiling and giggling with daddy for the first time since before surgery! We are waiting on x-ray results, but I can't imagine with how she's acting that they aren't going to look any better! Thank you, thank you, thank you for keeping our precious girl in your prayers! I can't tell you what a relief it is to see that big beautiful smile! I will keep posting updates...I am hoping we are turning the corner!!"
Monday, 1PM---"It's been a one step forward two steps back type of morning. We just had the floor doctors come on rounds and tell us that they are not so sure if Emri does in fact have a pneumothorax. It could still be a pneumothorax, but it could also be hyperinflation of the upper left lobe. These two problematic situations are treated differently and treating a hyperinflated lung aggressively can cause a pnemothorax to worsen...which can be dangerous and require a chest tube for immediate treatment. Since they can't tell what it is on x-ray they are thinking about a CT scan. I am not a huge fan of exposing Emri to more radiation, so I did ask if there was another way around this and the docs will be talking to radiation to see if there is something we can try other than a CT... I am feeling frustrated and emotionally drained---especially after last nights excitement-I really thought this morning would show better results. Please help us pray through this situation. Emri is once again, very frustrated with everything going on.
The picture below just makes me want to cry. Dr. Dietz came to wish us a Merry Christmas today with a giant basket of fruit, chocolate and stuffed animals. When the doctors came in to talk to us, he left and I saw him in the background checking out Emri's chest x-rays on a computer in the nurses station. He is just a wonderful, wonderful man-and I can't express how much it means to us that he truly, truly cares about Emri and desires the absolute best care for her. Just in case it wasn't enough that he discovered her life saving medication, he had to bring us a fruit basket too."
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