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."