Tuesday, October 29, 2013

Levi's First Family Day!

One year ago today, Levi became our son! I can not believe a year has passed. The time has flown.  It seems as if he has always been here.  He has blossomed so much.  He laughs, plays, teases, hugs, gets mad, and just acts so much freer now. He comes to us for help, for comfort, to cuddle.  It's not that he didn't do these things before its just the way he does it. He is comfortable.  He is at peace.  He knows we are his family and he is happy.  He has settled in! He is so much more energetic too! Now that he is breathing better and his oxygen is up this little guy is pink and on the go! He does wear out faster than his brothers and sisters, but he generally doesn't let it stop him!

It has been amazing to watch the bond form between he and Samuel.  They are finally to the point of enjoying one another as playmates.  Oh the giggling they do and the trouble they find! It is so fun to hear one of them say to the other, "you are my best friend!" or "I love you."  Of course I hear plenty of, "you are NOT my best friend anymore! Samuel has even announced once or twice, "Take Levi back to China!" But this does not last long. Within seconds they are playing and saying they are the best of friends. I love to see Samuel running off and realizing Levi is lagging behind.  He always stops, comes back, puts his arm around Levi and says, "Come on, Levi." He is becoming quite the protector.  Levi finds Samuel hilarious and looks up to his brother.  He copies everything Samuel does....not always a wise choice! ;)

I can not even imagine our family without Levi. He is pure joy. He is so incredibly brave. He never gives up and is so full of life. We were not sure what to expect with his complex heart defect. Still don't really. But I am so glad our fears did not stop us from adopting our son. God has blessed us greatly!

On September 10th,  we spoke with Dr. del Nido from Boston Children's.  He was wonderful.  Very informative and patient with our many questions.  He stated the records he received from Nationwide Children's were very good and thorough, but he still feels they can repair is heart.  He emphasized that their speciality is kids with hetertaxia (irregular placement of organs), and while Levi is a little more complex having transposition of the great arteries, heterotaxia, Complete Atrioventricular Canal defect, DORV, and pulmonary stenosis, he has repaired this before.  So, he wants us to come to Boston so he can perform his own study to determine if we can indeed move forward with a full repair.  We are beyond excited but trying to keep in check as this is what Nationwide felt too until they were actually inside Levi's chest.  But we are filled with hope and if he gets in there and says it can't be done then at least we will know we looked at all the possibilities! He did say this was a higher risk surgery short term compared to the Fontan.   However, for Levi, the long term is more stable.  

Due to Levi's upcoming cleft surgery we have put off Boston until late spring/early summer.  His oxygen saturations are holding good right now and he is thriving, so they felt it best to stay on schedule with the cleft repair.

We are still waiting to hear what they want to do with his intestinal malrotation.  We are praying they will just leave it alone since he has no symptoms and it seems to be working well for him!  

He also had his liver/spleen scan done.  As expected there is no spleen.  There is not even any splenic tissue.  His liver looks good, although is is a little more centered than normal, but that is no biggie.

It has been a wonderful first year with Levi and we are so thankful that he is our son!

Thursday, August 29, 2013

Boston News

Our second opinion is in! Boston believes they can, indeed, repair Levi's heart! I have to be honest, we were a bit stunned. We sent for a second opinion in hopes of this, but  I guess deep down we were expecting confirmation of the first diagnosis.  So now we are praying, considering, praying, researching, praying, and deciding what is best for our son.  Do you choose the more safe, stable palliative surgery that has more than likely long term complications.  Or do you go for the higher risk repair, that would have few complications long term but would require other open heart surgeries down the road to replace outgrown parts? It's hard having two doctors that you like having such different opinions.  So, on September 10,  we have a phone consult with Boston Children's to ask our many questions so we can make a knowledgable decision.  Please be praying we make the right decision for our son.

On top of that Levi finally had his upper GI to determine if his intestines are positioned correctly.   They are not. :(   In fact, many things are not positioned correctly.  His stomach is on the right side, appendix on left, and intestines on left.  All this is opposite.  Oh, and his liver is midline.  Levi is definitely uniquely made!  The good news is there is no obstructions and everything is working good.  We will be talking with a GI specialist as this may need to be corrected to prevent the intestines from twisting up.  There is a good chance if he does need surgery they will remove the appendix as a preventative measure since it is not located on the right side.  We are hoping if this all needs down they can just tie it into on of his cleft lip surgeries.  What would be best is if nothing needs done! We will know for sure after we speak with the GI specialist.   

Levi celebrated his 4th birthday on the 19th!  It was so fun to watch him.  He loved everything. The balloons. The decorations. The zoo. We wanted everything elephants!  I made him an elephant cake and we are all so proud as he was able to blow out each of his candles, thanks to his tracheal repair! So proud of him! He was proud of himself!  He loved his presents and kept making sure they were his, and not Samuel's.  Haha.  So glad we were able to celebrate this birthday with him as a family!  Levi has not gained much weight since home, maybe 1.5 pounds, but he has grown 3 inches! His color is great and he is much more active know that he is breathing better. He loves his siblings and it is so fun to watch him watch them! So fun to watch them bond and become best friends.  This time last year we were waiting for LOA and TA.  It seems like forever ago.  Levi seems like he has always been here.  Can't imagine our family without him! 



Soccer season is in full swing and Levi and Samuel are playing  for the first time.  They are so cute to watch. Levi is doing much better than I expected and is quite determine to kick that ball in the goal! 

Samuel learning to dribble!
Levi learning to dribble!
Samuel makes a goal!
Levi makes a goal!

Oh, and one more thing.  As if our house is not crazy enough, we got a puppy! His name is sneakers and he may just be the best dog ever! Levi loves him and so does everyone else!
Meg and Sneakers

Sunday, July 7, 2013

Tough Choices

We are between a rock and a hard place. It seems like any decision we make has pros and cons. It's frustrating to feel like your settling, when in reality you may not be settling, but you just don't know so that's what it feels like.   To make a decision that effects your son's life, in a life and death sort of way.  We are praying, but peace is not coming with either decision.
 
Many people have asked what exactly is wrong with Levi's heart.  Levi's heart diagnosis' are Double Outlet Right Ventricle (DORV), Complete Atrioventricular Canal Defect (CAVC), and Pulmonary Stenosis (PS).  
 
With DORV, the Aorta and the Pulmonary Artery are both attached to the right ventricle. This is in contrast to the normal heart, where the Aorta attaches to the left ventricle and the Pulmonary Artery attaches to the right ventricle. Blood from the left ventricle, which would normally leave the heart through the attached aorta, now must cross an abnormal hole in the wall dividing the right and left ventricles, called a Ventricular Septal Defect (VSD), in order to leave the heart and supply the head and body with blood. In this condition, the normally separated oxygen-rich arterial blood and oxygen-poor venous blood is mixed in the right ventricle prior to leaving the heart. Also, the normally low pressure right ventricle can be subjected to increased pressure from the normally high pressure left ventricle.
 
The CAVC is a second hole Levi has.  This large hole is in the center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood.
 
His PS is above and below the Pulmonary Valve so not much blood can get through.
 
When we adopted Levi we were told he would need the Fontan due to an underdeveloped left ventricle that was not functioning. We were at peace with this.  But then they found his left ventricle was developed and functioning fine. While it is smaller than the right side it is functioning.  Everyone was so happy because everything lined up for Levi to have a biventricular repair.
 
But when the surgeon got inside Levi's heart he felt a biventricular repair was impossible. 
 
  "Looking in, there was noted to be a complete atrioventricular canal, right dominant with a somewhat smaller left ventricular cavity.  However, the important feature was that the ventricular septum inserted more rightward and anterior to the aorta such that any attempt to close the VSD would bring the baffle across the left ventricular outflow tract, nearly obliterating it.  It was clear that there was no way to do a 2 ventricle repair and wind up with an inadequate left ventricular outflow tract.  Therefore, the decision was made to abandon the possibility of a 2 ventricle repair and proceed with a pulsatile bidirectional Glenn." (quote from surgeon's medical report) 
 
He said his Fontan would be very good because even though his heart would work as a single ventricle, his left side is there to help the right.  This is usually not the case with the Fontan. Usually the left ventricle is not functioning and the right ventricle works alone.  With both sides working together the Fontan may last longer.  He may not ever require a heart transplant.  We just don't know.  
 
We have been told by some to get a second opinion from a doctor in Boston who specializes in biventricular repairs. We did contact him and he was more than willing to review Levi's files.  But after reading the surgeon's report we are not sure the outcome would change and we don't want to put Levi through more tests and surgeries "incase" he could have a biventricular heart.  Or what if a biventricular heart would not be as safe in the long run because of his complex defect. Sometimes a biventricular repair can be done but will require more open heart surgeries down the road to replace parts that your child out grows.  Ones heart and body can only handle that so many times.  The outcome would still be a transplant if the heart couldn't handle the surgeries.  So do you go for a Fontan that has it's own set of complications with the possibility of a transplant down the road or a biventricular  repair that could require open heart surgery every few years and still end with a heart transplant?  
 
I wish it were a cut and dry decision.  It is not.  We have decided to request a second opinion, hoping the doctors are of the same agreement as to what should be done.  We know God knows what is best for Levi.  We are glad He has gone before us. Please be praying we hear His voice. That we choose the path He has for Levi.  
 
Romans 15:13 "I pray that God, the source of hope, will fill you completely with joy and peace because you trust in him. Then you will overflow with confident hope through the power of the Holy Spirit."

Thursday, June 27, 2013

Change of Plans

Sorry I neglected my blog yesterday! I gave updates, but between texting and Facebook that was all I had time for. 

Levi did great yesterday.  We got to the hospital at 6am and he gowned up and was ready to go.  They even prepared Dumbo and Josh to go to surgery, too! 

He went back to the OR about 8:10.  He was such a trooper with the hand off.   No tears and a kiss and wave goodbye.  He surgeon was expecting scar tissue under his original incision but it was way more than he anticipated.  It took from 9am, when the incision was made, until 11:20 to dissect  through all his scar tissue.  At 11:25, they placed him on the heart lung bypass and then the surgeon was going to inspect the heart. If all went well the av canal repair and TOF repair would begin at 1:00pm.  So, when the nurse came out at 1:26 and said they were done, we knew things had not gone as planned.

 The surgeon's inspection determined the above repairs were not possible.  Levi's aorta, and other great arteries are mal-rotated.  This did not show up on the 2 dimensional tests preformed previously.  The good news is his heart is strong. And his left ventricle, which was non functioning prior to January,  is functioning wonderfully! Praise God! 

While the surgery results were not what we thought,  we know God went before us and we know the results were no surprise to Him.  He made sure Levi would have a two ventricle heart, which for Levi, is very important long term. 

So, what did they do? They preformed the Glenn Procedure, which is the first step prior to the Fontan Procedure.  For those of you wondering, yes, the Fontan is generally for a single ventricle heart. However, they will be using this procedure on a two ventricle heart. Levi will continue to have his left ventricle pump the blood but the Fontan will stop the unoxygenated blood and the oxygenated blood from mixing.  With the Glenn they connected his superior vena cava to his pulmonary arteries.  His lungs are now supplying oxygenated blood to the heart. Until the Fontan is completed deoxygenated blood and oxygenated blood will continue to mix. So, he is still low on oxygen, 83-85% ( a little higher), and not completely pink. Oxygen will improve after the Fontan. When the Fontan is performed they will connect the inferior vena cava to the pulmonary artery as well. This will stop the mixing of blood. The heart will only supply blood to the body and the lungs will be supplied by the vena canvas. When will the Fontan be done? We are not sure.  They are thinking two years down the road but a lot will depend on how Levi does with the Glenn.

He was up in his room by 2:50 and woke shortly after we arrived.  He was mad because he wanted apple juice.  Generally, they like to wait 4 hours before giving liquids but he was crying so, which caused him to bleed out through his chest tube, they gave in a gave him diluted able juice.  He drank 8 ounces before he went to bed and another 8 through the night!

  He had a great night, but didn't sleep much.  He was alert and talkative and wanting to watch tv or play with his animals or firetruck.  He did have a couple of bouts with pain but the nurses have been wonderful and on top of that. He is itching like crazy as a result of a narcotic they gave him.  Nothing is touching that right now, but he is being a trooper.  He mostly is complaint about his IV's. He wants the out, now! When a nurse comes in he holds up his tiny hand and says, "out!" 

He was excited for breakfast but then changed his mind, but he ate a great lunch.  Due to his crying apple juice episode the doctors decided to give him some blood to boost him a bit before we transfer to the step down unit later this afternoon.  They  used the blood I donated  for him.  It was an awesome feeling seeing my blood become his.

Then at 11am the chest tube, arterial line, and cath were all removed! He is also off all IV fluids and meds and taking them oral. I am currently holding him and he promptly went to sleep! All is well!  At 1:30pm we moved to the step down unit. Next stop....home! Estimating a Saturday discharge. 

Psalm 111:1-4 "  Praise the Lord!  I will thank the Lord with all my heart as I meet with his godly people.  How amazing are the deeds of the Lord! All who delight in him should ponder them.  Everything he does reveals his glory and majesty.  His righteousness never fails.  He causes us to remember his wonderful works.  How gracious and merciful is our Lord!"

(I have pictures but will have to post those later as I can't do that through my iPad.)

Friday, June 21, 2013

Getting Closer

Pre-admission testing went great today. I am left with a couple questions that I thought of after the fact but they can get answered next week.  Levi did great. Wasn't overly thrilled with the nose swap or blood draw but he held up like a champ.  His oxygen level was lower today hovering between 76-77.  He normally is around 79-80.  How he even functions is beyond me, but in five more days he will be in the upper 90's! It was a clear reminder that this surgery needs to be done soon.  It's not optional.  

Levi will be having an AV Canal Repair, a Tetralogy of Fallot repair, and his central shunt will be closed off.  My question left is about the RV-PA conduit.  Not sure if that is part of one of the two above repairs so it wasn't mentioned or if they have decided its not needed.  Levi's aorta is not quite where it should be and he has stenosis above and below his Pulmonary Valve and in the Pulmonary artery.  They plan on dissecting out the narrowed sections of the PA and placing a patch there to widen the space. The valve may need some work as well.  So, I need to ask about the conduit and about the valve.  

Tomorrow is a big day, too.  Mark and I are donating blood for Levi's surgery.  He may not need it, but if he does he will have blood from his mom and dad! I think it's so cool that our  blood types and Levi's are compatible.  In fact, every member in our household has compatible. Isn't God Awesome!  He thinks of everything detail!  It's things like this that allow me to face this surgery with minimal worry and a complete peace.  

Since his tracheal repair, Levi's voice is so much stronger and he talks a bit more.  But on my birthday he blew out my candles!  He was not able to do that before.  I decided to try bubbles, as he couldn't blow those either.  While it was harder, he did it! At first he could only blow one and would be out of air and pressure, but after one week of practicing and building up those lungs he is blowing them continuously and doesn't want to stop! The speech therapist was thrilled  because kids with clefts can't usually blow things because they don't have the right air flow. They tend to try to blow though their nose.  Levi, once again has surprised them! All he needed was more air getting through to allow more force. I guess once his cleft is fixed speech will come easier having this air flow down. 

Can't wait to see what new things he will be able to do after this surgery! Can't wait to see him pink! 

Monday, June 17, 2013

Be Strong and Courageous

Deuteronomy 31:6 "Be strong and courageous. Do not be afraid or terrified, for the Lord your God goes with you; he will never leave you nor forsake you.”

On June 26th, Levi goes in for his 2nd major open heart surgery. His first surgery was done in China when he was 18 months old. We are teeter tottering between hopeful anticipation and a dread that leaves a knot in your stomach. We are so excited to see a pink, not blue, little boy running around. A little boy with breath to spare when running and playing with his friends. Free of coughs and weakness. We are told he should even start to grow more. Our little 3 ft, 25 pound, (almost) 4year old should sprout right up once his heart isn't working so hard all the time. No more oxygen levels in the 70's and 80's.

But the dread.....I can't even imagine the pain and discomfort of having your chest cracked open. I hate thinking about him having to suffer through this...again. The worry of possible outcomes like a stroke or the disruption of the cluster of nerve cells that controls your hearts rhythm. It's so easy to let your mind race and think of all the "What ifs." But God is greater! God does not call us to worry and fret about tomorrow. He is already there. He already has it all under His control.  He has paved the way and just asks us to follow. This time Levi is not alone. He has his family with him. He has his church family with him. He knows Jesus is with him. I keep remembering his last surgery; how God placed a lady from our church, who is a nurse, in the surgical room. The prayers I know she lifted up. I didn't even know this lady. Didn't know she attended our church until a week later. I have no doubt God has plans for another believer to be in this surgery lifting our son up to his heavenly Father.

This surgery should last 6-8 hours and the hospital stay will be 7-8 days if all goes well with no complications. Please join us in prayer as Levi goes through this major surgery. Below are some specific things to be praying for!!

1. For the doctors' skill and wisdom. For discernment to know exactly what needs to be done to repair Levi's heart.

2. That the doctors' wouldn't find any surprises once inside Levi's heart and that he will, in fact, be able to have a two ventricle heart.

3. For protection of the nerve cell cluster that controls the hearts rhythm. They are invisible and the surgeons just go by where they "should" be. However with a heart defect like Levi's, they are not always where they should be. If it's disturbed Levi would require a pacemaker. Also pray for protection from a stroke.

4. For recovery to be smooth with no complications. For lungs to remain clear and for no infections to develop. Levi does not have a spleen which places him at high risk for infection after surgery.

5. Peace for Levi during this scary time. He seems to remember his first open heart surgery and is not very happy about it, yet he knows there isn't much of a choice. He is one brave little guy.

6. Pray for his pain to be minimal and well controlled.

7. For peace and extra stamina for our family. While we trust God's healing hand we are still human and its hard to wrap your head around at times as a parent, so I can only imagine the thoughts going through our other kids minds. Pray for their peace and comfort.

Isaiah 40:31 "But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint."

Wednesday, May 8, 2013

Six Months Home!!


Levi has been home for 6 months!!! So hard to believe. It has flown by, yet it seems like he has been with us forever. He has fit right into our family.  It always amazes me how God knows which child belongs where and how He just grafts them into your family.   Levi's transition has been easy. He has adjusted tremendously and adores his brothers and sisters and we adore him!  We have enjoyed watching him learn to play, run, jump, and gallop. How to wrestle and rough house a bit.  His little personality is blossoming and it is so fun to watch.  He loves playing with Legos and blocks, farm animals, trains, and cars.  He loves to color and put his favorite things in his backpack.  He loves to eat and is not at all picky. He likes to help cook and set the table.  He has grown 2 inches and gained 2 pounds since October.  (Although the weight was gained in the hospital from the feeding tube.)  We are hopeful that he will gain some weight once his heart is fixed and his body doesn't burn off all the calories from working so hard.   His tracheal reconstruction was successful.  You can tell he is getting more air even in his speech. His voice is bigger and clearer. He is still short of breath but not as severe as before. We believe this is due to the heart defect and should disappear after the heart repair.  I remember being scared about Levi's heart condition. Feeling like it was too complex for us to handle. Hearing God say, "It's not too complex. You can do this."  God was right on. Levi is a wonderful gift to our family.  He is precious beyond measure. A pure delight.  We are truly blessed.   In 6 months we have watched the Lord bring healing physically, medically, and emotionally to Levi and it has been awesome to watch. I can only imagine what the next 6 months will bring.  


Meeting Levi

6 months home


And, we think Levi loves his family, too......

Thursday, April 25, 2013

The Tiniest Details


Psalm 121:5  "The LORD himself watches over you! The LORD stands beside you as your protective shade."

We have been home 6 days. Levi is finally starting to act like his normal self. We had a few worrisome days, not because of anything physical, just his personality was so altered.  We were told it was mainly due to withdraw symptoms. They also said it would take 7 days to overcome. They were correct! I am happy to say Levi is back to his normal happy self today! I am also happy to report Levi runs and goes up stairs without sounding like Darth Vader! In fact, there is no sound at all!! So good to hear him breathing with ease.
I have to share, God is amazing.  I know He cares and is always with us. Watching over us, protecting us. But sometimes little things come to light and you just stand in awe at how much He really does care. At how much He takes care of the tiniest details.  You are all probably saying, "Okay, so what did He do?" Well, the day of surgery we were all at peace. Even Levi had a smile on his face right up to being taken back to surgery. Well, except when a doctor or nurse came in....then he kind of zoned out like "maybe if I don't talk or look at them they won't know I'm here." lol.   Anyway, our wonderful children's pastor and his wife came up and prayed with Levi before he went back to surgery. Then our preschool pastor came and sat with Mark and I the whole time of the surgery.  We also knew hundreds of people were praying for Levi. We felt comforted. We felt at peace. We knew God was in control and going to work all things for good so Levi could breath easier.  What we didn't know, was God wanted more. God wanted one of His workers right in there with Levi. Praying over him and keeping watch.  Let me explain.  

 Last night we went to church. We have attended this church for almost two years.  It's a bigger church and while we know almost all the kids we do not know all the parents.  While walking down the hall to take Levi to the bathroom, a lady stopped me and said, "Hey, that's Levi! I had him in surgery a couple of weeks ago! I'm a surgical nurse."  Turns out this lady attends our church! I had her son in Caravan last year. She is also my daughter’s school nurse. But, she also works at Children's Hospital.  Just so happens, this sweet lady from our church was in with our son during surgery. Praying for him as well, knowing he was on our prayer chain. God not only answered our prayers for a safe successful surgery, but He made sure a sister in Christ was with Levi the whole time! Isn't that amazing? I didn't even know. Wouldn't of known had she not said something.  She usually works urology, so it's rare she was down there for a trachea repair.  She said she would watch for him June 26th for his heart surgery.  Again, doesn't usually help with cardiac cases but she said she could most certainly be there to walk him back if need be.  So far, the doctors have been great about letting us stay with Levi in the surgical unit until he is all the way asleep, but you never know. 
I love that my God is a God that watches over us. He is concerned with every tiny detail.  He doesn’t miss one thing.   He does not just want to observe our lives, He wants to be actively involved.  

Friday, April 19, 2013

Friday: Going Home!!

Thursday was pretty uneventful, so I didn't post.   We did get moved over to the step down unit which has been nice.  Nurses aren't in as much and you are free to walk around with your child as much as you like without permission.  Levi spent most of the day awake. He got some stitches out and
permission to go home Friday!!  We did notice he started to have some withdraw symptoms from the morphine.  Nothing serious just profuse sweating and cold chills were he couldn't get warm.  He looked like he had just jumped out of the tub without drying off, he was so wet!

So, today, Friday, we are just waiting for the doctors to round and give us the final okay to go home! We both can't wait to get home to see everyone and I can't wait to see Levi back to his normal self! He gets very serious in the hospital and hardly talks or smiles. I get a few when no one else is around but as soon as he sees some one in a uniform...forget it! He was like this for his heart cathe, too.  Not quite sure he trusts them and I can't say that I blame him.

Psalm 118:15 "Shouts of joy and victory resound in the tents of the righteous: The Lord's right hand has done mighty things!"

   

Wednesday, April 17, 2013

Wednesday

Today has been a great day. One, I finally got to hold Levi!! We took a two hour morning snooze together in the recliner.  So good to hold my precious boy.  By the end of it all lines removed and normal activity has been allowed.  Levi was able to go to the playroom twice and play with Meg and Samuel. He has started using the potty, as he refuses to go in the diaper.  He drank 6 containers of apple juice. Ate fishy crackers, scrambled eggs, and chocolate ice cream.  All narcotics have been discontinued so we are hoping we will see more of his happy personality tomorrow, as we still would zone out today and have periods of agitation.

He kept the nurses on their toes as he can pull of all five cardiac leads in ones swift hand motion, as well as is O2 sensor! He is quick and he is strong! He is stubborn and determined! They moved him to a regular bed as he was trying to crawl out of the crib and they were worried he would fall.  This is nice as I can now sleep with him!!

 We have not been moved to the step down unit yet but I overheard all their beds are full so maybe tomorrow or maybe we will go home from here? I was hoping for tomorrow but figure we are looking at Friday. 

Thanks everyone for all your prayers!!!

Tuesday, April 16, 2013

Tuesday

Last night was a rough night. Levi was extremely agitated to the point it took 3 of us to hold him down so his neck would not move. Even the Meds seemed to not phase him. It did not help that both of his IVs had to be replaced. By 10am he was out and he never woke until 9pm tonight!! Dr. Willet arrived around 5:30 and took him down to the OR by 6:00. The procedure took all of 6 minutes and he was back up in the room by 6:45. His trachea looks great!! By 10:00pm he was off the vent! He has done well and he has been nice and stable! I still have not gotten to hold him as he is still coming out of the sedatives and is still very mad. Hoping a good night sleep will get some of the Meds out of his system. Thanks for all your prayers!!!

Monday, April 15, 2013

Monday

Today has been a pretty good day. Levi has been able to be out for longer periods of time with not as many wakeful, agitated moments.  We did have a rough half hour around 8pm but we are resting peacefully now.  When he is awake nothing at this point consoles him. He wants out! Out of the restraints and out of the bed! Only 20 more hours, Levi!! I can't wait to finally hold him. Then we will both be happy! Pray that his trachea is healed enough for the vent to come out and for it to look good even though he has had some very wiggly moments!! Pray we can come home Thursday!!!

Ephesians 3:20 " Now all glory to God, who is able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think."

Sunday and a Day Late

Sorry I did not post an update yesterday! I was actually able to sneak out of Levi's room around 11am and spend time at RMH with Samuel and Meg.  I even got a shower, some lunch, and an afternoon nap with Samuel.  I returned at 5pm to a little guy who was just waking up so timing was great.  Mark stayed this whole time with Levi and was sad he didnt wake up for him, though.  I think he has a mommy radar and knows when I return! They changed his Meds Sunday morning and they are working much better! He sleeps peacefully for 5-6 hours before waking up and is not requiring any extra doses in between.

When I walked in his room those eyes flew open and his arms raised up to be held.  How I hate telling him "Mommy can't hold you, yet."  he took his little finger and pointed adamantly to the bed...meaning jump in bed with me if you can't hold me!!  I had told him daily the week before surgery that I would not be able to hold him but could lay with him. He obviously remembered!! However, this time around he is in a small crib and mama doesn't fit.  And even if I did fit the are too many tubes and lines going into him. There is just no way right now.  But I told him 2 more days and I will be holding him and sleeping with him!!!  He held up his 2 little fingers and nodded.  He amazes me at how much he understands everything.

 At 8pm, Dr. Willet came by and removed his rubber and drain.  That is one cool way to use a drain.  That band slipped right out so easily and caused zero pain. Levi didn't even flinch! The nurses are all loving him and think he is just the cutest little guy.  He waves to one of his nurses and and she said "oh, are you waving hi?". Levi shook his head no, and waved again.  She said, "are you waving bye? Do you want me to leave?" Levi  looked right at her and nodded, "YES!"  Fortunatly, she laughed and thought it was cute. ;)  

Saturday, April 13, 2013

Saturday Evening

Levi has slept great this evening.  Everyone is surprised at how how his tolerance is for the sedation Meds and they have to keep uping them.  They finally quit using the paralytic due to its side effects and have used benedryl, which has knocked him out pretty good on top of the morphin and other sedation drug.  The frequency of the jerky movements has diminished.  Our ENT stopped in and said he looked wonderful. He saw Levi thrash and said he looked like a fish on a hook.  Guess that pretty much describes it.  He felt as long as we can calm him we should be okay.  It makes sleeping hard though because I am scared to take my eyes off him as you don't know when the drugs will wear off and the thrashing begin!

The plan is: Sunday the rubber and drain comes out.  Monday his feedings will be discontinued in the evenings and steroids started.  Tuesday at 5pm will go back to surgery to have a bronchoscope done.  If all looks well they will put in a smaller vent tube and once fully awake they will take him off the vent.  This may happen Wednesday morning depending how long sedation takes to wear off.   Wednesday or Thursday we should move to the step down floor for a couple of days.

Saturday Afternoon

Levi has been sedated most of the day.  He is just thrashing around too much. I beleive it's mainly a side effect of the drugs but they need to be given else the thrashing will cause more scar tissue and stenosis.

He has not lost his sense of humor, however.  Once when he was being a bit too wiggly the nurse and I both held him down and said "SSHH" trying to calm him down. He put his tiny little finger to his lips and tried to shush us back then grinned real big.  Such a stinker even when sedated!  Made us all have a good laugh though.

His cultures all came back clear so he doesn't have an infection.  The fever was gone but came back this afternoon. They are just going to watch it. It's very low and they do not seem too worried.  We have noticed his blue hue is back. :(   As he is breathing more on his own he is taking less oxygen. The pink toes and high oxygen level was due to the breathing the vent was doing for him.  We are back down to 75-78 for his oxygen levels and blue toes, lips, and fingertips.  We look forward to knowing that in June he will have beautiful pink toes! You don't realize how blue they are until you see them so nice and pink.

Continue to pray that he would not thrash about and that the Lord would protect that trachea as it heals.

Saturday Morning

Last night went pretty well.  Levi continues to do well. The only problem we are having is his movement.  The nurse and I do not agree about the source of the movement.  She feels Levi is agitated from laying still and twisting his head and body purposely.  Therefore she keeps ordering more paralytic drug to make him lie still.  I feel the movements are involuntary and caused by the medicine wearing off.  The movements remind me of a catterpiller forming its crysalys if you have ever observed that.  Very rigid and jerky.  It looks uncontrolled.  He will be sleeping soundly and all of a sudden the movement starts and jt startles him awake.  That doesnt seem voluntary to me. Also, yesterday he didn't even need to be sedated he was so calm and cooperative.  They even lossened his hand restraints a bit so he could play with his balloon.  This too makes me feel it's the Meds. We will see when a new nurse comes in.  If it is the meds, everytime she gives him more its going to have the same results eventually.  Whatever the cause, the problem is, too much movement will move the vent and rub on his trachea adding to scar tissue.  We don't want to be back were we started.  Please be praying his jerky movements stop whatever the cause.

New nurses in and they agree with me that this is not voluntary! They are changing the dosage of his Meds to keep him still.  Pray it works!  The cath was removed  as well so pray his bladder cooperates.

Friday, April 12, 2013

Friday Evening

Levi had a great evening.  He was awake from 6:00 to 6:30 wanting to play with his toys.  He is still restrained so play is limited. He is such a good little boy. So cooperative.  He is being so goody hey took him off the paralytic sedative.  He has also tolerated food through his g tube and is up to a normal feeding. It was good to see him playing a bit and interacting.

Looks like we may have a rough night. Mark was to stay the night with him so I could get some sleep and spend time with Samuel and Meg.  (I was up all night with him last night)  We only made it until 10pm and he was crying for me and only me!! :). That is a good thing!!  Fortunately, Samuel was sleeping already and I am hoping he doesn't wake up and realize I am no longer beside him. Else Mark won't get any sleep either!  Levi stopped fussing as soon as he saw me and promptly went to sleep.  He seems agitated though and keeps twisting his body back and forth which he can't do....so back to sedation for a bit.  He probably is tired of laying flat on his back and not being able to move his head and arms.  Night time always seems harder.  Four more days and he will be able to move a bit more which will be a huge help.

Pray for an uneventful, peaceful sleeping night for all!

Friday Afternoon

Levi has developed a temp this afternoon. They are running some cultures to make sure there is no infection. No one seems real worried as it is pretty common for your body to respond to a surgery with a fever.  Do continue to pray there is no infection.

We has been awake a bit more but for very short periods. We continue to get some smiles and he loves the Thomas balloon daddy brought him!

Ronald McDonald house has been a blessing.  So nice to run over today and get a shower and a clean change of clothes.  They even gave us lunch.

Tanya, a cardiology nurse from our last visit, and Tracey, our nurse today, we're able to pull some strings so Meg and Samuel could be on the floor in the playroom.  They are not allowed to be in Levi's room but so helpful to have them one door down so Mark and I can switch on and off.

Friday Morning

Levi is such a trooper!! He woke this morning and gave me a smile!! He was only awake maybe 5 minutes. But shook his head "yes" that he wanted to see daddy, Meg, and Samuel.  He smiled again when I said they were coming. Then daddy called and talked to him and boy did that get a smile!!!  He is sleeping peacefully now. His cardiologist and ENT have both been in and both gave great reports and said he is doing outstanding!!  They are going to discontinue the paralytic and see how he does since he was smilie and calm earlier.   Praying he can remain off it!  They are also going to start feedings through his GT tube.  God is good!!

Our First Night

Levi had a pretty good night.  We had a few ups and downs. He has mostly slept, but when he did wake he was in a lot of pain and looked terrified. Partly, I think due to the pain and partly due to him trying to talk and cry and having no sound come out.  He calms down when I talk to him and he shook his head when I asked him if he was hurting. (He also stomped his little foot, which is not restrained.  ;) ) He signed, best he could with arm restraints, that he wanted water.  They were able to dip a sponge stick in some water and squeeze it it his mouth. Then they upt his pain Meds.  A little later he decided he would just try to bite through that vent tube in his mouth so that earned him a paralytic sedation drug. :(   He is now completely out.  I guess in some ways that is good since he was so miserable.  They also placed a cath in a few hours ago as he was not going to the bathroom.

He looks good though and his heart has been stable.  His oxygen has been fluctuating back down to around 74 but that is within a normal range for him.  We were ecstatic after surgery that it was 84.  Not sure why it went back down but hoping it rises this morning.  I stayed by his bed most of the night, awake or dozing lightly, so I would there if he woke.  Unfortunately, I moved to a chair behind his bed at 5:00 due to an X-ray that was being taken. I fell asleep and didn't wake until 5:30, which isn't bad in itself but I missed Dr. Willet coming in!!  Anyway, he told the nurse everything looked good and that he would do the bronchoscope on Tuesday to see if the trachea is healed enough to remove the vent.  That is an answer to prayer!! We were praying for Tuesday as Mark has to return to work on Thursday. Looking forward and praying for him to be a little more comfortable today and less agitated.

Everyone on the home front did great last night. Mark, Samuel, and Meg will be joining me at the hospital today.  We will be moving into the Ronald McDonald house so the little ones will be close by and Mark and I can rotate shifts.  The hospital is going to make an exception and let them visit as well!

"My hope is in you, Lord
All the day long.
I won't be shaken by drought or storm.
A peace that passes understanding is my song,
And I sing
My hope is in you, Lord." (Aaron Shust)

Thursday, April 11, 2013

Out of Surgery

Levi never ceases to amaze me. This kid is honestly one of the bravest people I know.  He knew what was coming. Yet, he trusts and moves forward knowing what is about to happen.  He was such a trooper. He did not complain once about not being able to eat or drink. His surgery was scheduled for 1:30 but they didn't take him until 3:00. Still, not one complaint.  When Dr. Kirschner came in to talk about his lip procedure we shared with him that Dr. Willet would be doing a bronchoscope in 5-7 days to see if the trachea had healed enough to come off the vent.  Dr. Kirschner did not realize this and decided to cancel the lip adhesion.  The lip adhesion is very fragile and can rip with even a smile.  He felt that the scope would cause the adhesion to rear so he felt it best to postpone this surgery.  We are thankful to have a doctor who is concerned with doing things right even though it messes up his schedule!

I was able to go back with him to Pre op and stay with him until he was out.  The anesthesiologist was not real keen on this but Mark spoke up and Levi, right on cue as they tried to take him yelled "NO, Mommy!"  so the anesthesiologist caved and let me go back! Levi watched me the whole time and right before he went out he said, "Mommy."  So, so sweet it was!

Surgery went wonderful! They finished around 5:30.  Levi's heart remained stable for the most part. Dr. Willet said his blood pressure and oxygen dropped a few time but they just stopped and waited for it to come back up before moving forward.  We finally got to see him around 6:30.  Poor little guy is hooked up to all sorts of machines.  When he wakes he looks scared. I am sure the tubes in his throat feel funny and he can't talk or make any sound. That has to be scary, too.  When he cries it is silent tears. :(. I have not been able to hold him but when he wakes he looks for me and reaches out his tiny hand for me to hold.

I have pictures but can't upload them tonight so will add them later.  Be praying Dr. Willet can evaluate his trachea on Tuesday.  He made a comment he may wait 7 days due to his schedule.  Don't really want to be on the vent 2 extra days because of someone's schedule so be praying his schedule is clear and that Levi's trachea is healed enough to be off the vent!!

Thanks for all your prayers today!!

Monday, April 8, 2013

We Know Who Goes Before Us



In three more days it all begins. Levi will have the first of three major surgeries. The doctors will tackle his tracheal stenosis and begin the first steps of his lip repair. This should really be the easiest of all the surgeries, but with his unrepaired heart it throws in a bunch of unknowns. The hardest part will be keeping a 3.5 year old still while on a ventilator for five days. While he will be breathing on his own, the ventilator will be in place to hold the tracheal graft in place so it does not close back up while healing. He will also have a feeding tube because of the ventilator. He will not be able to talk. We will not be able to hold him for five days. We expect he will be sedated a good part of the time. It's going to be a long five days, BUT we are at peace. The God that held and protected Levi while he lay on a sidewalk waiting to be found; that kept him alive in an orphanage suffering from malnourishment and a severe heart condition;  that placed him at New Day where He knew he would receive the loving care he needed... IS the SAME God that will hold him through these surgeries!

"Whom Shall I Fear?" by Chris Tomlin

You hear me when I call
You are my morning song
Though darkness fills the night
It cannot hide the light
Whom shall I fear
You crush the enemy
Underneath my feet
You are my sword and shield
Though troubles linger still
Whom shall I fear

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

My strength is in Your name
For You alone can save
You will deliver me
Yours is the victory
Whom shall I fear
Whom shall I fear

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side

And nothing formed against me shall stand
You hold the whole world in Your hands
I'm holding on to Your promises
You are faithful
You are faithful (2x)

I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side
The one who reigns forever
He is a friend of mine
The God of angel armies
Is always by my side (2x)

Whom shall we fear? What shall we fear? NOTHING! God's got this!

We do have some specific prayer requests:

1. Levi would be at peace. Both before and after surgery.
2. That Levi would not fight the vent or feeding tube.
3. That pain would be minimal.
4. For the graft used to widen the trachea. That it would adhere and not narrow back down.
5. For his heart to remain stable.
6. For his doctors to have wisdom, discernment during surgery, and for skilled, steady hands.
7. For his initial lip repair to go well and that Levi would like it. (He has stated he doesn't want it fixed) I think when he sees how much more he can do with a repaired lip he will be happy! We will all miss that wide grin and his sweet half puckered kisses! But, I bet he will be able to blow out his birthday candles this year for the first time! And bubbles! Oh, how he tries to blow bubbles!             
8. For our other children whose routine are going to be crazy for a week and will not see much of mommy.
9. For our hospital stay to be short! They are quoting 7-8 days. We are praying for 5-6.

Thanks and we will keep you updated as we are able!

Thursday, March 14, 2013

Levi's Heart Surgeon

Today we met with the surgeon who will be performing Levi's heart surgery. We loved him! He was so patient and friendly and took his time explaining everything that would need to be done and various scenarios.  It still gets confusing but I feel we have a better understanding of Levi's condition.  Levi has Tetrolgy of  Fallot (TOF),  along with a Complete Atrioventricular Septal defect (AVD)with Double Outleft Right Ventricle (DORV), and pulmonary stenosis (PS).  Again, it was mentioned they do not understand the change in his condition from November to now, BUT, they are glad because unless they get in there and find something that has not shown up Levi WILL have a two ventricle heart. He WILL have a normal life expectancy. He WILL be able to participate in any activities that he like. He will not need a heart transplant in his teens.  He won't even have to take his daily dose of aspirin!  God is so good!!!  We do have several things for you all to be praying for.  One, Levi will need a conduit that will allow blood to flow from his left ventricle up to his pulmonary artery.  There are two ways to do this.  The preferable way is to use his own tissue. This allows the conduit to grow as Levi grows. He would probably require another open heart surgery in his twenties to replace a valve but past that he would be set.  If they can't use his tissue they will use a synthetic conduit. Obviously this cannot grow with Levi so in 4-5 years it would need to be replaced. And, this would go on until he is done growing.  The outcome is the same for either conduit but the first option would decrease the number of open heart surgeries required. So please pray with us he can have a tissue conduit. Two, the are a group of cells close to the AVD that control the electrics impulses of the heart.  They cannot be seen but they know approximately where they should be. However, everyone's heart is different so there's a risk when they patch his holes they could damage some of those cells causing his heart to fire erratically.  If this happens he would need a pacemaker.  Please be praying they will NOT disrupt this cluster of cells.   Lastly, be praying his valves are attached appropriately.  All tests have shown that they are but there is a small chance that they will get in there and find they are not.  If this is the case we are back to a single ventricle heart.   Surgery is not until June 26th so we will post a more detailed prayer list but these are three things we can all be praying for now.   Levi has his tracheal surgery April 11th.That's only 28 days. Be praying for this surgery as well. That Levi would be at peace and feel the Lord's presence.  This surgery is not overly risky but being on a vent for 5 days is going to be hard on a 3 year old.  He is also going to wake up to a new lip. That will be a big change for all of us. 

"Now to Him who is able to do immeasurably more than all we ask or imagine, 
to Him be glory in the church and in Christ Jesus throughout all generations, 
according to His power that is at work within us, for ever and ever! Amen." 
Ephesians 3:20-21

Monday, February 11, 2013

New Day Fundraiser

New Day needs your help. 

New day is the foster home that found Levi when he was 7.5 months old, laying in a crib, weak and malnourished.  They have a formula ministry to several government run orphanages and Levi's orphanage happened to be one of them.  They were able to arrange for Levi to be moved to New Day.  No doubt, Levi would have died in the orphanage.  This is what New Day does.  They take in children with severe medical needs that otherwise would die.  New Day takes these children and gets them the medical care they need, not to mention the love they receive.  This is all funded by donations.  No government help is given.  Levi received his first surgery that saved his life due to generous donors.  Right now there is a little boy named Benjamin receiving medical care. It is costing New Day $400 per day. He is just one of many babies currently receiving medical care.  New Day has been doing a fundraiser the past two weeks trying to raise $12,000 for all the precious children in their care.  Right now they are up to $6954.   Calls come in daily from orphanages asking New Day to take children. They frequently have to turn children away due to no beds being available.  New Day is some of these children's only hope. Please help by making a donation to New Day. It does not have to be much. Even $5 will help.  That's one lunch you could pack instead of buying.  If you want to read more about the children that have been helped click here.  http://newdayfosterhome.blogspot.com/ 
Levi was the focus child yesterday. Let's help them raise the remaining $5000! 

Friday, February 8, 2013

Three Months Home!



Levi has been home three months!!!  In three months he has grown 1.25" and gained 1#.  He can't seem to put on weight as his heart works so hard everything he eats gets burnt right off!!!  But he is shooting up!

In three months we have had ear tubes put in, a heart cath, a  bronchoscopy, 2 echos, an ultrasound, and a cleft lip and palate consult.  Not to mention the visit to the international ad option clinc and dentist.  We have been busy, but Levi has held up like a champ.

So what do we know from all this? Well, we know Levi is on target developmentally except for expressive speech which is expected with the cleft. He actually expresses himself quite well and frequently! ;)

We know that he failed his hearing test due to fluid in his ears, but that is all taken care of now so hopefully when they test his hearing in a month or so he will pass with flying colors! He is obviously feeling better because once the tubes were put in this little guy has been active!!! Of course this has caused more labored breathing.

We know he has a high level of lead in his system that they are monitoring and he will be tested in a month or so to see if it has gone down.

We know he does not have a spleen but they are still running tests to see if he has splenic tissue which would work like a spleen. This would be awesome because he then could stop his daily dose of amoxicillin. Be praying for that!!

We know he has scar tissue on his trachea causing  stenosis but this will be fixed April 11th.  He will have a lip adhesion done at the same time, but the actual lip repair and palate will be put off until after his heart is repaired.  I have to say I am dreading this surgery because I LOVE Levi's wide joyous smile.  I am going to miss it.  I know he will have a new joyous smile but it wont be the same.

We have a confirmed heart diagnosis of a Complete Atrioventricular Canal defect (AVD)with Double Outleft Right Ventricle (DORV) and pulmonary stenosis (PS).  Also known as a complete cardiac cushion defect. China was right on with their diagnosis.

The BEST news we discovered is that our little man will have a 2 ventricle  heart. It looks like this surgery will be June 26th and Levi will be out running with the best of them by the fall.  He already has big plans for soccer and basketball.

What is yet to be done? Well, we need to do the liver spleen scan to determine if there is any splenic tissue.  We need to get our vision tested and hearing re-tested. Lastly, the doctors want to run an upper GI to see if Levi has malrotation  of the bowels.  I guess with all his other midline issues this could be one as well and they want to rule it out. If he would have it it would need to be dealt with as well. Be praying he does not!

We have been in AWE of God's grace and healing! This was the little guy, that when we received his referral, both china and the US told us he would live with a single ventricle heart.  That his left ventricle was too small.  That his pulmonary artery too narrow.  That he would need a heart transplant at some point. That even with treatment, he may have too much damage to his lungs by the time you get him home to help him much.  This was the little boy surgeons in China would not touch because of the severity of his tracheal stenosis.  Levi has had hundreds of prayer warriors praying for him and his healing.  Today, he is the little guy that will have two ventricles.  That has tracheal stenosis, but not to the severity that was seen on the MRIs.  God has big plans for this little peanut. I can't wait to watch them unfold. And, I am so glad Mark and I listened to our hearts and not our heads.  That our children followed willingly, trusting that God was leading.  And what a wonderful thing it has been to watch our children see firsthand our God work! Our God heal!

"Now to Him who is able to do immeasurably more than all we ask or imagine,
according to His power that is at work within us,
to Him be glory in the church and in Christ Jesus throughout all generations,
for ever and ever! Amen."
Ephesians 3: 20-21

Tuesday, January 29, 2013

Healing Levi's Heart


I am hesitant to write this as none of it is set in stone, but I wanted you all to know what is going on so you can be praying specifically.
The cardiologist called this morning. They were going to meet tomorrow with the cardio/ENT team to discuss Levi's heart and tracheal conditions but they have postponed it until next Wednesday.  Reason being, they want to do a sedated echo next Tuesday to look at Levi's Arterial Valve.  People have 2 arterial valves. Levi only has one very large one.  They want to look and see if there is enough tissue to divide the valve into two working valves.  IF this can be done,  our little guy will be able to have two working ventricles. They would then patch two very large holes and do a Right Ventricle-Pulmonary Artery conduit to re route his blood.  (His pulmonary valve and aortic valve are not where they should be.) 


If the arterial valve can not be divided he will have to have the Fontan procedure which will produce a single ventricle heart. The RV-PA conduit would not have to be done.

While the 2 ventricle surgery is a longer, more complicated surgery, the end results are better.  Levi will live a normal life with two ventricles. With the Fontan his heart will only last 10-20 years before he would need a heart transplant.  So, please join us in prayer for his arterial valve to be able to be divided into 2 valves!!

Next, it looks like the tracheal stenosis may be dealt with before the heart.  Reason being, the doctors feel Levi's pressures are good enough right now to wait 4-5 months for heart surgery.  They are concerned that his trachea may not handle being on the vent for such a long surgery and then the recovery time.  If they do the trachea first they can do the heart 3 months later and his trachea will be good to go. So unless this changes next week, it looks like his heart surgery will not be until summer and his trachea surgery in the next couple of months.  They are also going to try and do his cleft lip and palate at the same time as his trachea.  The trachea surgery sounds pretty simple but the recovery does not sound fun. They will cut a slit in the trachea and then take a piece of cartilage  from Levi's ear and use it to widen the circumference of the trachea.  He will then be placed on a ventilator for 5 days to allow the trachea to heal in the correct position and not close back up.  This 5 days however will help with the healing of the cleft as well.

Our little guy has finally gained a pound and he has grown 1.25" since coming home!! Continue to pray for weight gain as he doesn't have much he can lose when the surgeries start up!

We will continue to update the blog as we find out more but for now be praying for the valves! We will know by next Wednesday!



Thursday, January 24, 2013

Surgery Day

Today was Levi's surgery. He woke up remembering he could not eat. He had no complaints until Samuel ate. Then he was a bit mad. He walked around carrying a spoon yelling "NO!"
This was short lived however. We arrived at the hospital at 11:30 and everyone was ready to take us early. So we were rushed through the registration process. Levi was a bit worried once the nurses started checking his stats. His oxygen level was low hovering between 79 and 80.  He ended up falling to sleep and not waking until they gave him some medicine to help him relax. This medicine made him one silly little guy and by time I carried him back to the surgical unit he was not worried in the least!!  He is one brave little trooper!

The ENT doctor came out about 2pm and explained Levi's stenosis.  Levi does have tracheal stenosis that will need to be repaired.  It was not congenital.  It was caused by his first heart surgery. The vent was put in I such a way that it rubbed on his trachea creating scar tissue.   However, it is a very thin stenosis, 360 degrees. He said it is repairable and not a severe type.  Thanks for your prayers for this because on the initial X-rays his trachea was nor only narrow, but twisted.  No twisting is present!

I will update this post when we hear from the cardiologist. Keep praying!

Levi  came through his surgery like a champ. Honestly, he is the bravest little guy I know.  His ear tubes are in and there was a lot of drainage. I can't imagine how uncomfortable that must have been for him all these months...years.  Excited to see how they effect his speech 
and hearing!

Now for the AMAZING miracle!! In November, the ultrasound and echo showed Levi's heart as working with only 1 ventricle and a very narrow pulmonary artery that was only allowing drops of blood to pass through.  TODAY, they found 2, yes 2, good sized chambers and a nice sized pulmonary artery functioning as it should!!! Praise be to God!!  The cath doctor is not able to see how the valves are attached, but...if they are good our little guy will have a 2 ventricle heart!!! They will repair the holes.  So, our new prayer request is that Levi's valves would be found to be in perfect order! This will be told by another echo. I am sure our cardiologist is going to be surprised when he sees the results of today's cath!!  

The Cardiologists will be discussing Levi's test results next week to decide where to go from here.

Thanks for your prayers!!




Thursday, January 17, 2013

A Hope and a Future

Last night the hospital called.  We have all the details surrounding Levi's surgery. 

January 24th, at noon, we will arrive at Children's hospital. Levi's ENT surgery will begin at 2pm.  During this surgery the doctor will be putting in ear tubes and doing a scope of his trachea to determine what needs to be done for his tracheal stenosis.  There is a chance nothing will be needed to be done. Please be praying this is the case! 

At 3 pm he will be transferred, while still out, to the cath lab. This will last around 3 hours. Then he will be in recovery for an hour and transferred to the heart floor to rest for 6 hours.  We had hoped to come home that night but will have to wait and see. If any intervention is done during the cath we will automatically have to stay the night.  Also, due to the 6 hours of rest we are talking midnight or so, so they may ask us to stay because of that.  If we have the option, we will come home even if it is that late.

Levi will not be able to eat any food after midnight on the 23rd. Since his surgery does not begin until 2pm, this is going to be very hard for Levi, who loves to eat ALL DAY LONG.  He also can't afford to lose much weight! Please be praying his tummy feels full and he is not miserable all morning and early afternoon.

We were also told, while the doctors usually let parents stay back with the child until they are put to sleep, this is not the case for Levi.  Due to his airway being considered "critical" they will not allow us to be with him while putting him under.  This is going to be hard on him and us! 

As I was talking to Levi about all the upcoming events his face just fell. He looked very sad and said, "No" then pointed to his heart.  He clung onto me and kept saying , "No."  As Little as he was I believe he remembers his first surgery in China. Obviously, any heart surgery is going to be painful, but on top of painful he was alone.  Now, we were blessed because New Day always sends a nanny with the child to the hospital and this nanny stays with the child. However, in China, nannies are not allowed on the floor until the child is moved down to the regular floor. So, Levi was alone. He woke up to a ventilator alone.  He experienced fear and pain alone.  Once he was feeling better and moved down to the floor his sweet nanny was there to comfort him.  But, until then, nothing.  I keep explaining to him Mommy and Daddy will be there with you as soon as you wake up. We will be there the whole time except when you are with the doctor.  I am not sure he comprehends this. Please be praying for his peace.

Pray that the ENT and Cardiologists have steady hands and God's wisdom to determine the best treatment for Levi.    We also ask that you pray they would find things not as bad as they believe. That God would have already been healing Levi's heart and trachea.

Pray for Samuel who will be at home overnight for the first time without us. That he would also be at peace and feel secure.

On a less serious note, two nights ago I watched a webinar about living life with a single ventricle.  Levi has been asking to play soccer because Samuel will be playing this year. I keep telling him I do not believe he will be able to do that but maybe he can help daddy coach.  Well, the doctor doing the seminar said that kids can play sports. It has nothing to do with the Fontan it has to do with the strength of the heart and whether or not arrhythmias are present.  Well, I went and told Levi he may be able to play soccer and he threw up his arms and yelled, "YAY!!"  He was so cute. So excited at the possibility.  

So we will meet this surgery head on  in hopes that Levi can run, jump, and play soccer like all little boys should!

Thanks for your prayers!