11/12/12 Levi had his cardiology appointment including an EKG and echo cardiogram . We learned that Levi's heart is very strong but, structurally, very complicated. Basically, Levi has 2 holes in his heart that are large and running into each other. This creates one large open space instead of a heart that has two sides. He also has only one valve that controls the blood going in and out. The blood tends to swoosh around and not get pumped out. Unfortunately, his pulmonary artery is also VERY narrow which does not allow the blood to flow through freely. Instead it comes through in drops, meaning his lungs do not get the blood that they need. A heart cathe will help determine the severity of his condition and help the doctors develop a treatment plan for Levi. This plan will be to help his heart last for as long as possible. Levi's condition is not one that can just be fixed. At some point in Levi's life he will need a heart transplant. We ask for your prayers for Levi and for the doctors wisdom as they determine the best plan for Levi.
11/14/12. Levi went to Wednesday church for first time. We knew so many people were excited to meet him and thought that if we went on Wednesday it would be a smaller crowd and then Sunday came around half the people would have already met him. Well, Levi LOVED it!!! He was so funny and animated with everyone. We were surprised when he reached his arms out to Pastor Jason to be held, but when Jason tried, Levi changed his mind. We decided he was teasing Jason because he did this 3-4 times to the poor guy. Next, Pastor David came to see him and Levi went right to him! We were really surprised! He let no one else hold him that evening, unless it was Mom, dad, or Pastor David. By the end of the evening he was down wanting to play with the other kids. They were playing basketball and while he tried so hard to play, we worried because the increased activity had him breathing and coughing really hard. Hopefully,after surgery be will be able to play more. Without stressing his body. I am so thankful for the love and support we and Levi have received from our church. I am also thankful to live in a country were people accept differences and don't shun a person for looking different. In china, people were quite rude about Levi's clefts. They view it as a curse and bad luck. They would look at him and gawk....some would point and laugh. It was hard to watch. Hard To remain silent. Here, in America we have experienced nothing but kindness. Now I know there will be "those" people. There always are. But as a whole we have only experienced excitement and encouraging words. Each day Levi comes out of his shell a little bit more. Blossoming into a playful, happy, ornery little boy. The change in him the past few days has been amazing! And I know he did so well at church because of all the love he felt when he walked through those doors!
11/16/12 Today we had the IA clinic. Levi saw a Speech therapist, dietitian physical therapist, psychologist, and a doctor. He received a second TB test and a flu shot. The poor little guy had to give a good amount of blood as well. He is such a brave little guy. Everyone was really surprised at how well Levi does eating and speaking. He has no delays with receptive language but is delayed with expressive due to his cleft. There are just some sounds he can not make because structurally things are not there to allow certain sounds to be made. No delays were found developmentally either. So, only speech will be needed but not until the clefts are repaired. They were also pleased with how well Levi has attached to Mark and I. And how well he does considering his condition. The doctor ordered an x ray of his chest and an ultrasound to determine how his lungs are and if he has a spleen.
11/18/12. Today we went grocery shopping for the first time. Levi loved it! He kept pointing to all the food and wanting it in the cart. When I would put something in the cart he would clap and ask for it to be placed on his lap! He was quite buried by the end of the trip but very happy as well.
11/19/12 We were back at Children's today for his TB test reading, hearing test, and ultrasound. TB test came back clear so that was good. He failed his hearing test more than likely due to fluid on his eardrum. This will be further evaluated, but it seems our little guy may also need tubes put in his ears. Thankfully, we all know that he can hear it is probably just muffled. The ultrasound confirmed Levi has no spleen. A CT may be done to see if there are baby spleens formed as this sometimes occurs with Asplenia. All his other organs seem to be in place! Now to find out how his lungs are and his trachea. We are scheduled for the ENT December 7th. This is a consultation with surgery on the 13th. On the 13th, they will be scoping the trachea, possibly repairing it if need be, and doing the heart cathe. We may discuss the possibility of putting in the ear tubes this day as well. Please pray that the tracheal stenosis is mild and does not need to be repaired and for Levi's lung pressures to be below 16.
For those of you wondering, YES, we knew ALL of these issues when we asked for Levi's referral. None of this is a surprise for us and the outcome is not a surprise to our Lord. We know He will be with us, and Levi, as we walk this road together to heal Levi's heart!
Happy Thanksgiving everyone! We have much to be thankful for! God Bless!
No comments:
Post a Comment