Saturday, July 31, 2010
Friday, July 30, 2010
Wednesday, July 28, 2010
Tuesday, July 27, 2010
Monday, July 26, 2010
Her mood seemed to be a bit better today than the past few days, so maybe she is feeling a little better, or at least adjusting to being back in the hospital. Hopefully we will know more about "the plan" tomorrow.
Friday, July 23, 2010
Elizabeth had a very busy and at times upseting day. Its very hard to watch her be stuck and poked so much and then to have a tube stuck down her nose. But we know that all of it has to be done to help make her better.
We have had so many people checking in on her and us, we are truly lucky to have such a great support system. Our familes, friends, coworkers, and even people we have never met are making this very diffucult time a little easier.
Wednesday, July 21, 2010
We met with Dr Lisa Young today a pulmonologist with the Rare Lung Disease program. She expressed concern about Elizabeth and her condition. After reviewing the results from the Echo yesterday Elizabeth's pulmonary hypertension has gotten worse. Which means she has more stress on her heart. Dr Young also said that almost all cases of this specific lung disease are no longer seen in children over 6 months old so Elizabeth is close to the point where the lung disease should not be affecting her. She showed us pictures of Elizabeth's lungs compared to those of a healthy child and explained to us how her lungs are very immature. Apparently her lungs are still under-developed and that is one of the problems that keeping her on oxygen along with the pulmonary hypertension. Her lungs need to grow, but with her growth issues and the sterorids she is on her growth is slowed. SO she wanted to admit her to the hospital. After discussing things and trying to decide what would be best for Elizabeth and for us, she was able to make arrangements for us to go to Vanderbilt tomorrow and be admitted so we are only 2 hrs from home instead of 6. She also discussed other concerns regarding her failure to gain weight, and her developmental delays and wants the Dr at Vanderbilt to look into those issues as well. She told us none of these issues are emergency problems but things that need to be looked at sooner than later and felt that admitting us would be the best way to get her looked at and cared for sooner than later. We are unsure how long we will be at the hospital but hopeful that Elizabeth will get some much needed treatment and not struggle daily to breath. We appreciate everyones continued support and hope that we will have better news to share soon!
Tuesday, July 20, 2010
Tomorrow we meet with the Pulmonologist here that specializes in rare lung disease, I am excited and nervous to hear what she has to say. She should hopefully go over the CT scan images with us so we have a better idea of what condition Elizabeth's lungs are in.
We are hoping to head home after the appt tomorrow, and we are already scheduled to come back in October to meet with Cardiology to discuss her pulmonary hypertension.
Monday, July 19, 2010
I am very nervous about the sedation and now even more scared because of the ventilator and the issues she had in the past. I am hoping for the best and that the Doctors make the best decision with regards to her safety. I will try to update throughout the day tomorrow we will pretty much be there all day.
Thanks again to everyone for thoughts, prayers, and help!!
Saturday, July 17, 2010
Headed to Cinncinanti! We are on the road right now headed towards Cinncinati Children's Hospital. We have appointments on Mon, Tues, and Wed. Monday we will meet with Anesthia to discuss Elizabeth and make sure they know all of her medical issues and discuss any concerns we have. Then Tuesday she will be put under sedation to have a high resolution CT scan on her lungs, and an echocardigram done on her heart. Wednesday we meet with Dr. Lisa Young to hopefully learn more about her lung disease and any talk more about the medications that she is on and if any changes need to be made. Please keep Elizabeth in your thoughts and prayers over the next few days! I will update this daily with any news that we get.