The ENT did some brief tests on Ava today and found that her right vocal chord was fine and while the left had less movement, it was not paralyzed. They think it is just injured as it is extremely swollen and irritated from being intubated. And I'm sure going back on the ventilator three times has not helped either! They say it could take 6 weeks to several months to heal. Right now they are giving her a steroid to reduce the inflammation. Tomorrow she is scheduled to go through a three part swallow test to see about the reflux and aspirations into the airway. These aspirations can cause fluid to get into her lungs because the airway is not closing. If she has reflux she can be medicated to help with it. But if she has aspirations because her vocal chord is not protecting her airway then she will need to be tube fed until the chord can heal. This could take several months. She went back on tube feedings yesterday every couple of hours.
Ava seems much more content today than yesterday. She has long periods of alert times but doesn't seem as agitated. I got to hold her for a couple of hours today and it felt great. Tomorrow afternoon we have a team meeting with her cardiologists, primary nurse, social worker and surgeon. This is to discuss the short and long term goals for Ava and to make sure we are all on the same page in terms of her care. Jamie and Brayden will get here early for the meeting. I can't wait to see them both!
Ke'Myiah is now out of ICU again and on the regular floor. I am so happy for her and Candais. Thank you for all of your prayers.
Wondering how things are going at Howard-Ellis these days? I miss you all (staff, students, parents, etc.) Hope all is well in room 9. Please tell my students I said "hello". I'm sure Mrs. VanTuyl is doing a fabulous job in my absence. Thank you Amy Rudlaff as I hear you have been helping out a bunch in the classroom. Happy Birthday to Cheryl, Ava's nurse!
As always, it means so much to have you all out there praying and supporting Ava and our entire family. What would we do without all of you?
Thursday, November 8, 2007
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Ava with Mommy & Daddy
Isn't she beautiful!
It's A Girl!
Hello everyone and welcome to Ava Christine's Blog.
First a little info about the new edition to our family.
This beautiful little girl comes to our family after many years of trying on her parents part as well as her being the first girl in 19 years. Yes 19 years! So to say that she is going to be a little spoiled is putting it very lightly.
Ava Christine was welcomed into this world on September 29 2007 by her mommy Jamie, Daddy Jamie, big brother Brayden, grandparents, aunts, uncles, cousins, and numerous friends. Shortly after Ava's arrival the wonderful medical staff at Memorial hospital of South Bend found what they called a murmur in Ava's heart. After some testing little Ava was transported to Motts' Children Hospital at the University of Michigan in Ann Arbor. Jamie and Jamie were informed that little Ava has a heart defect that could be life threatening and that she needed to undergo open heart surgery to fix the defects. So, on Tuesday October 2 2007 Ava was operated on by the wonderful medical staff at the U of M. What this team of doctors did to Ava is incredible. First of all Jamie explained to me over the phone today just what problems Ava's heart has endured. Ava's heart has a couple of different problems. The first is known as Interrupted Aortic Arch. The following info about interrupted aortic arch is best explained by the U of M Cardiac website, "Interrupted aortic arch is a very rare heart defect that occurs when the aorta does not develop normally while the baby is in the mother’s womb. It comprises about 1% of all congenital heart defects. It usually occurs along with other heart problems such as truncus arteriosus, ventricular septal defect, transposition of the great arteries, and aortic stenosis.The aorta is the large blood vessel that arises from the left side of the normal heart and takes red blood out to the body. The first part of the aorta, called the ascending aorta (1) arises upwards. It then curves leftward forming the aortic arch (2). The aorta then curves downward towards the lower body, and this part is called the descending aorta (3). Three blood vessels exit from the aortic arch and supply the head and arms with red blood. These vessels are called the innominate artery (4), the left carotid artery (5), and the left subclavian artery (6).In babies with interrupted aortic arch, there is a complete blockage between the ascending and the descending aorta (1). This means that there is no direct way for red blood leaving the heart to reach the body parts that are "downstream" from the blockage. The site of the defect varies (2) and may or may not involve the take-off of the head and neck vessels. In most babies with interrupted aortic arch (70-90%) there is also a large ventricular septal defect (3).In newborns with interrupted aortic arch, the only way for blood to bypass the blockage is via the patent ductus arteriosus (4). Prior to birth, this small blood vessel permits blood to by-pass the baby’s fluid-filled lungs. One or two days after birth, this vessel usually closes on its own. In a baby with interrupted aortic arch, if the duct closes, blood can no longer reach the lower body. This can cause the baby to suddenly become very ill. Therefore, after the diagnosis is made, a medicine called prostaglandin is used to keep the ductus arteriosus open until surgery". (http://www.med.umich.edu/cvc/mchc/parint.htm)
So how did the doctors fix this? "Interrupted aortic arch is a serious heart defect that requires surgery soon after birth. The goal of surgery is to create remove the blockage. This used to be done in a two-stage operation but is now done most of the time in one stage. The two ends of the aorta are sewn together (1) and the patent ductus arterious (2) is tied off. Sometimes a patch is needed to reinforce the repair. If present, a patch is sewn over the VSD (3)". (http://www.med.umich.edu/cvc/mchc/parint.htm)
In #1 of the picture below is the part of Ava' heart that was repaired.
First a little info about the new edition to our family.
This beautiful little girl comes to our family after many years of trying on her parents part as well as her being the first girl in 19 years. Yes 19 years! So to say that she is going to be a little spoiled is putting it very lightly.
Ava Christine was welcomed into this world on September 29 2007 by her mommy Jamie, Daddy Jamie, big brother Brayden, grandparents, aunts, uncles, cousins, and numerous friends. Shortly after Ava's arrival the wonderful medical staff at Memorial hospital of South Bend found what they called a murmur in Ava's heart. After some testing little Ava was transported to Motts' Children Hospital at the University of Michigan in Ann Arbor. Jamie and Jamie were informed that little Ava has a heart defect that could be life threatening and that she needed to undergo open heart surgery to fix the defects. So, on Tuesday October 2 2007 Ava was operated on by the wonderful medical staff at the U of M. What this team of doctors did to Ava is incredible. First of all Jamie explained to me over the phone today just what problems Ava's heart has endured. Ava's heart has a couple of different problems. The first is known as Interrupted Aortic Arch. The following info about interrupted aortic arch is best explained by the U of M Cardiac website, "Interrupted aortic arch is a very rare heart defect that occurs when the aorta does not develop normally while the baby is in the mother’s womb. It comprises about 1% of all congenital heart defects. It usually occurs along with other heart problems such as truncus arteriosus, ventricular septal defect, transposition of the great arteries, and aortic stenosis.The aorta is the large blood vessel that arises from the left side of the normal heart and takes red blood out to the body. The first part of the aorta, called the ascending aorta (1) arises upwards. It then curves leftward forming the aortic arch (2). The aorta then curves downward towards the lower body, and this part is called the descending aorta (3). Three blood vessels exit from the aortic arch and supply the head and arms with red blood. These vessels are called the innominate artery (4), the left carotid artery (5), and the left subclavian artery (6).In babies with interrupted aortic arch, there is a complete blockage between the ascending and the descending aorta (1). This means that there is no direct way for red blood leaving the heart to reach the body parts that are "downstream" from the blockage. The site of the defect varies (2) and may or may not involve the take-off of the head and neck vessels. In most babies with interrupted aortic arch (70-90%) there is also a large ventricular septal defect (3).In newborns with interrupted aortic arch, the only way for blood to bypass the blockage is via the patent ductus arteriosus (4). Prior to birth, this small blood vessel permits blood to by-pass the baby’s fluid-filled lungs. One or two days after birth, this vessel usually closes on its own. In a baby with interrupted aortic arch, if the duct closes, blood can no longer reach the lower body. This can cause the baby to suddenly become very ill. Therefore, after the diagnosis is made, a medicine called prostaglandin is used to keep the ductus arteriosus open until surgery". (http://www.med.umich.edu/cvc/mchc/parint.htm)
So how did the doctors fix this? "Interrupted aortic arch is a serious heart defect that requires surgery soon after birth. The goal of surgery is to create remove the blockage. This used to be done in a two-stage operation but is now done most of the time in one stage. The two ends of the aorta are sewn together (1) and the patent ductus arterious (2) is tied off. Sometimes a patch is needed to reinforce the repair. If present, a patch is sewn over the VSD (3)". (http://www.med.umich.edu/cvc/mchc/parint.htm)
In #1 of the picture below is the part of Ava' heart that was repaired.
Before surgery
The Next Step
The next step in repairing Ava's heart was to fix what is known as Truncus Arteriosus. Truncus arteriosus is "characterized by a large ventricular septal defect over which a large, single great vessel (truncus) arises. This single great vessel carries blood both to the body and to the lungs". (http://www.americanheart.org/presenter.jhtml?identifier=11073) Below is a picture of what Ava's heart was like before surgery.
Before Surgery
After Surgery
The above picture shows what the surgeon did to repair Ava's heart. "Surgery is required to close the ventricular septal defect and separate blood flow to the body from blood flow to the lungs. This is generally done early in infancy to prevent high blood pressure from damaging the lungs' arteries. A patch is used to close the ventricular defect. The pulmonary arteries are then disconnected from the single great vessel and a tube (a conduit or tunnel) is placed from the right ventricle to these pulmonary arteries. This is sometimes called a Rastelli repair". (http://www.americanheart.org/presenter.jhtml?identifier=11073)
Blog Archive
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2007
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November
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- ECHO results
- 8 Pounds Yet?
- "Status Quo"
- Just an Update
- Happy Thanksgiving from Aunt Trace
- U of M Report
- What will the future hold?
- Jamie, this post is for you. Ava WILL get through ...
- Jamie wanted me to blog something, but her last bl...
- Broken Hearted
- Not Quite Ready to Leave ICU
- Not Even A "Whiff"
- Team Meeting
- Finally Some Good News!
- Watching and Waiting
- Quick Update
- 3rd Time is a Charm?
- For Mommy & Daddy
- Rough Times at U of M
- To good to be true
- Out of ICU!
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November
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14 comments:
Good news is really great to find out.IM glad her volcal cord is not damaged.Its also good news to here about Ke'myiah is out of icu!!!!!
I hope Ava gets better still.
Jamie--Good news about Ava's vocals--how you will so appreciate her late night cries for mom--it is amazing what we take for granted. I think you will have some sense of direction after your team meeting---I did with my cancer, but as I am sure you know, doctors can't always predict everything, especially with little miss sassy pants, who proves daily what a tough fighter she is.
Howard is doing fine, and will welcome you back with open arms when it is time. Ava needs you and your students are in good hands.
Please continue to take care of yourself. I know you know how important it is for Bray to see a healthy mom.
Prayers are still said nightly.
Love you Jame--
Molly
We are all so thankful for small blessings!!!!!!!!! Your classroom seems to be fine, though Jon for 1 is missing you terribly. You had a huge impact on him in a very short time:). Keep your chin up mom your men will be back tomorrow!!!
Susan for the Hannafius'
I want Ava to feel better. I prayed for her today. I love Ava. Say Hi to Jamison for me when you see him. Is Brayden Okay? I hope Jamie feels better.
Luke Rice
Ava is pretty. I hope she will be home soon. I love her. I hope she feels better. I like her pictures. Say Hi to Brayden.
Bye. Meg Rice
Hi Ava! I missed you this morning. Granny hasnt felt good. I was suppose to come and see you today. As you know, it did not happen. I am very sad abouth that. But reading about your day today, has made me very happY Like Molly said, I cant wait to hear you cry! None of us will take that for granted! What great news little one!!! You certainly do things your way! Jamie, I will be thinking about you tomorrow. I pray most things they say will be positive. But just remember, the end result is having Ava home, in your arms, with Bray and Jamie by your side. That will be the happiest moment. It will not matter what you may have ahead of you. You have already been through the worst I would think. In your home, with Ava, you can handle anything. You have alot of love and support out there. Your friends and family extended also, have shown you are in our hearts and we are all praying every day, You might not understand it, but you and Ava are lucky. Our (for you know, you will have to share Ava with alot of people!)Ava, sassy pants, fighter, tough cookie, beautiful girl, is loved and one day she will be home. Hang on to that thought. Good night Ava Christine. Sweet dreams to you and your mom. Good luck tomorrow.
love always
granny and poppy
Jamie,
It’s great to hear good news about Ava’s vocal chords. And I will be thinking of you tomorrow for your meeting.
Jamie, we do miss you dearly at Howard, and am looking forward to the days when we can chat after school about what Ava and Bray are up to. However at this time we just want you to continue to be the best mom ever! Howard is not going anywhere, so take care of yourself and your family.
Love,
Janelle
Jamie,
We do miss you at Howard. It isn't the same with you gone, however, you are where you need to be right now. Pam is working so hard and doing a great job.
I will be thinking of you and praying for you during your meeting today.
Love,
Emilee
Jamie - Congratulations on the wonderful news! Hopefully after your meeting with your doctors, you will finally be able to see a light shining at the end of the tunnel - no matter how long that tunnel may be. Your family and friends are there with you and your family the whole way! Our thoughts and prayers are with you daily. Hang in there and be strong! Ginger
So glad to hear some good news. I will be thinking about you all today and praying.
April
Good morning Ava Christine!! I will be thinking about you all day and your mom and dad also. Well, I always think about your big brother. I pray to God, that all goes well today. Just tell your mom that with all the support from friends and family, you can get through anything those doctors dish out. Jamie, just try and be strong, so you can think clearly and ask lots of questions. Ava is your daughter and you have every right to ask ANYTHING. I will be praying hard and I love all of you. Give Brayden a big hug and kiss from his granny. Tell Bray I still want to"schnuggle".
We love you Ava
granny and poppy
Hi Jamie, should I say Moneky Dummy! I am subbing in Jack's room today. Kelly Best showed me how to do this. We want you to know that all of us are praying for you. I will pass this along to Jennifer and Amy. Jen is a teacher's aide at her boys' school, and Amy is teaching 3rd grade in the city of Chicago. Amy is getting married August 16.
Much love, Barb Swartzell
Jamie,
The staff, students, and parents at Howard/Ellis all miss you but know you are where you need to be. I pray that you get positive news at your team meeting today. Please be sure and take care of yourself Jamie!
Love,
Beth A.
I pray that her doctors and her nurse will come up with the best possible plan to help Ava continue to get better and stronger every day. I also pray that God gives you the strength to be strong.
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