Posted below is the story on Adria's care page, written by her mother Starr. Starr has the most information (obviously) about Adria's condition and I'd rather let you all read in her words what little Miss Adria is going through.
"Adria Bridget was born via c-section at 12:54am on 9/11/2010 weighing 6lbs 2.9oz,17" long.
Adria was born with TGA(Transposition of the Great Arteries). In this condition, the main pulmonary and aortic arteries are reversed,so the blood/oxygen exchange does not happen properly,and they need to be reversed.
Adria was much sicker than most babies with TGA when she was born.Due to this,she was flown by life-star helicopter to Children's Hospital Boston around 5pm on 9/11. She was put on a heart/lung bypass machine called ECMO to keep her stabilized and get enough oxygen to her body.I have been told she is one of only three cases to need ECMO pre-operatively in the past 15 years at CHB.
Adria had her arterial switch operation on 9/15/10,and did well at first.24 hours later,her right lung collapsed due to a large mucus plug.She coded,but by the grace of god the doctors were able to bring her back,but had to put her back on the ECMO machine,and keep her chest open to help the retained fluid come out.Her chest was closed a couple weeks later,but eventually had to be re-opened to help with the release of fluid accumulation.It has since been closed, and she has been doing well with her chest closed.Her right lung eventually healed itself as well.
A few days later, the doctors decided to do a bronchioscopy to remove the large amount of mucus in her collapsed lung,and said it was a relatively simple procedure,especially compared to everything else she had been through.However,a one in a million complication happened and when they went to pull out the plug,they tore her trachea.This is the only time in Children's Hospital Boston's history that this happened during such a procedure.They spoke to specialists all around the world to help her.Since they did not want to push air through the tear,she was kept alive solely through the ECMO machine for 5 days so the tear could heal.
Adria also developed damage to her lymphatic system after the operation,which has caused excess drainage from her chest cavity called chylis effusions.This basically means that instead of her lymphatic system absorbing the fluid like it should,it was coming out of drainage tubes from her chest.She is still having small amounts of this drainage, but it is slowly healing.
Adria is recovering very slowly.She is still on a ventilator (breathing machine).She does take some of her own breaths,but the machine does some of the work.They are in the process of weaning her from it.She does well with it sometimes,but has a harder time breathing when she has larger amounts of fluid in her chest cavity.We are hoping that she will be able to come off of it soon.
In December, she had 2 procedures done to correct the chest cavity/chest tube drainage issues.They worked well and she no longer has chest tubes in.She does have a tummy drain(called a P-D drain) that is still draining a bit,and this is the main reason why she has not been able to come home.She will be able to come home with some of her other things and issues,but not this drain.Adria was doing very well until the very beginning of January,when she developed a lung infection and became very sick.They were not sure if she would make it through.However, she has progressed in leaps and bounds in the past week,and we are hoping we are finally on the road to recovery.
She has been doing much better now,but still has a very long way to go because she is still draining.She is doing very well with her tracheostomy ventilator and she will have that for some time so she has an airway to help her if she needs it down the road.
It has been a long road and we are still anxiously awaiting the day we get to bring our baby home. We have gotten very lucky that she will not need any extensive long-term care after being released, has not had any brain damage, and now has a heart that works perfectly!She just needs to get better from her other complications. She is an absoutely beautiful baby and loves staring at people and things when she is awake,and looks like she is starting to try to smile.She loves balloons and music.Please keep your prayers with us on this journey.Thank you to all who have helped or supported us in some way,or just kept us in your thoughts."
7 months later, Adria is still in the hospital. Hospital bills are racking up for her and her family , not to mention the amount it costs to live. Her parents are driving back and forth to the hospital every day and we all know how heinous gas prices are now-a-days. If you can afford to offer a little help, I know they would appreciate it. This family has been through so much, and I would love for them to be able to breathe just a little bit and not have to worry about how they are going to get their bills or the hospital bills paid. Please feel free to leave words of encouragement for the family, as well as donations as I know they would appreciate both very much.
Thank you!
Crystal
