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!

Monday, January 7, 2013

Two Months Home

January 3rd marked Levi being home for 2 months.  It seems like he has always been here.  He is doing amazing and we love to just sit and watch him. He has a wonderful sense of humor and loves to tease. His facial expressions are wonderful!!! He loves to just sit and play with his toys and seems to have a wonderful imagination.  He loves to board games and read books.  Play doh is also a favorite.  He is getting pretty good at running but can't do it for very long. His new task he is trying to master is jumping!  He is determined to keep up with Samuel!! Samuel and Levi are turning into good buddies. They love to mimic each other, which can be good and bad! They are too funny to watch when they get all giggly about something.

While Levi has attached well to us he still had a few behaviors we were working on.   One, he tended to play by himself. While he let mom and dad join in he didn't really relish the other kids joining in. I firmly believe this was a trust issue. Him trusting that they wanted to play with him.   Now he let's them join in and even seeks them out!!   He also, if he fell or got hurt, would just say, "OW" and keep going, not wanting any cuddles.  Today for the first time he bumped his elbow, started to cry, and sought me out for some hugs and kisses!!!! He is figuring out that we are family. That we are always here for him. That he can come to us for anything.  My heart was happy!

He also loves to pray. At dinner he wants to be the one to pray. I so wish I could understand what he is saying. Due to his cleft it is sometimes hard to grasp all his words.  What we do understand is his thanking Jesus for each of us.  He will also point to his food, drink, and napkin for us to say what it is. Haha.

Levi goes in on January 24th for his heart catheterization.  He will also have a scope done to determine the extent of tracheal stenosis and have ear tubes put in.  After the cathe is done we will have more information as to what we need to do so Levi and run and jump with Samuel without getting short of breath and blue! Please  be praying for the doctors to have wisdom concerning our son.