We’re Still Here – Update

Hi Everyone! Evan is still in the CICU at Children’s Hospital of Pittsburgh. He is challenging the doctors on how to bring his pulmonary pressures down which are still super systemic.  Pulmonary Hypertension is a very serious disease of the lungs which causes high pressures in the lungs. The pressures in the lungs should be approximately half of your body’s blood pressure and Evan has shown that his can be 2x’s his body pressure. The  increased pressures in the lungs cause the heart to have to work harder because it  is receiving more blood than it should. Evan has a small ASD (a hole in his heart) which was opened during his surgery in Boston which is an essentially a pop-off for the extra blood flow so that it has somewhere to go should the pressures become to high. Evan’s heart function is normal and it is compensating  for the increased pressures…..Look at God. In order to take some of the stress off of his heart we have to determine why his pressures are so high. Pulmonary Hypertension can be caused by a number of things including sleep apnea, some type of obstruction, aspiration and reflux to name a few. Pulmonary hypertension can also be idiopathic which means there is no obvious cause which makes it harder to treat.

 

Evan underwent a sleep study a couple of weeks ago and the results of the study shows that he does have some obstructive sleep apnea. In order to determine a plan moving forward it is important for us not only to treat the pulmonary hypertension but to also treat any underlying causes. We also have to keep in mind his pulmonary vein stenosis because some treatments can cause his PVS to get worst.  Yesterday,  Evan went to the operating room where he had a pulmonology, Upper GI and ENT (ear, nose and throat) scope.  Pulmonology was looking at the structure of his lungs and to determine if there were any abnormalities and look for signs of aspiration. GI (Gastoenterology) was looking for any signs of reflux and/or any abnormalities in his digestive tract. ENT was looking for any obstructions that were contributing to his obstructive sleep apnea.  Evan had to be intubated (on a ventilator) for the procedure and was a ROCK Star like always.  We got good reports from  both GI and Pulmonology. ENT found that his voicebox was floppy so that could be contributing to the sleep apnea. When you sleep your muscles relax including the voicebox so since his is floppy it could be closing thus cutting off his airways. In order to fix that they snip the voicebox in order to open it up. Evan had some discomfort yesterday after the procedure and a dose of Tylenol made it all better.

Evan came out of the OR intubated in order to give the anesthesia time to wear off. Evan must be awake enough to breathe on his own in order to pull the vent. I came in the room  and Evan heard my voice and started to wake up and of course he started to pull on the vent so the nurses, doctors and respiratory therapists had to work quickly to pull the vent or he was going to pull it himself! Once off the vent he did fine and took a nice long nap. Evan had been NPO (no food by mouth) leading up to the procedure.  He took his first couple of bottles no issues so they are now working on changing his medicine from IV to mouth. His medicine was moved to IV since he wasn’t allowed to take anything by mouth. Anytime you have anesthesia you have to stop eating for a specified period of time before the procedure.

 

Overall Evan has been doing fantastic clinically. He is happy, talking and of course playing with those toes. He is a fan favorite on the floor and everyone has fallen in love with him. I know that this is a lot but I know that it is not too big for our God. Please continue to pray with me that Evan will be heart and lungs will be healed.

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3 thoughts on “We’re Still Here – Update

  1. Amber says:

    Hey happy baby!!! Glad he is doing good post procedure. I will continue to pray for Evan and your family Ki. This is only a test. Love you all

  2. Grandma says:

    My goodness!! Our little warrior has been through it hasn’t he?!! And through it all, his radiant spirit continues to shine! He certainly is a special child of God! I read and prayed that he would come through all procedures with flying colors and he did! Evan you are the mightiest!! Thank You Lord!!

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