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.)

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