Boston Day 5 & 6 – Update

Day 5

On Monday night Evan was moved to the cardiac intensive care unit (CICU) as a precaution in the event he needed more supportive care which he would not be able to get on ‘the floor.’ He was running a high fever all day on Monday and it took a lot out of him and really made him feel crappy. Evan spent the majority of the day sleeping and I was so relieved to see him sleeping peacefully after being up nearly 24 hours the day before. We know that Evan has narrowing of his veins (PVS) which is causing his heart to work harder and we also know that he aspirated which has likely caused an infection in his lungs which has contributed to his fever. We also know that according to his CT scan, echos, and x-rays that it appears that his upper right pulmonary vein is pretty narrow and as a result the upper right lobes of his lungs are getting poor profusion as evidenced by the lingering atelectasis in his upper right lung. All of these things combined with an increased work of breathing which required him to be on one liter of oxygen continuously, and his lab work the decision was made to send him to the CICU. Once in the CICU he was given a blood transfusion; lab work done to check his hemoglobin and hemocrit came back considerably low which can also cause increased work of breathing and cause you not to feel well. Hemoglobin is a protein in your blood which delivers oxygen to your tissues. The hemocrit measures the amount of red blood cells compared to the total blood volume. Many labs had been done throughout the day to test for many things including infection, oxygen levels, potassium and sodium levels which combined with his heart/lung issue also contributed to the need for the blood transfusion. He did not require any other supportive care once in the CICU except for IV Lasix in order to remove some of the fluid from the extra volume from the blood transfusion and to relieve the volume in his lungs.

Day 6

After a good night sleep, the blood transfusion and IV Lasix and no fever Evan got kicked out of the CICU and was sent back on the floor. HIs breathing was not as labored and he was much more alert. He is still on one liter of oxygen. The plan over the next day or so is for Evan to have a heart catheterization .He was originally scheduled for a heart cath on Monday but because of the fever and the way he looked clinically they decided to hold off. This will be Evan’s second heart catheterization. A heart cath is done by inserting a catheter into a blood vessel in his groin so that the doctors are able to measure the pressures in Evan’s heart and measure the size of his veins. This information will allow the surgeon to make decisions related to surgery and prepare for the upcoming sutureless repair (I”ll explain that later). The other reason for the cath is it allows them to do interventions prior to surgery in order to relieve pressure off of his heart and make it safer for surgery. The interventions including ballooning the veins in order to open them up, placing a stent or a coil. The most likely intervention is ballooning the veins. As explained before the pulmonary veins go from your lungs to your heart and there is only so far that the surgeon can repair if the narrowing is outside of this range the cath lab offers an opportunity to open the narrowing that cannot be done in the operating room. These are all real live decisions that will be made in the cath lab based on what they find. The procedure is considered high risk because of the potential for interventions but the benefit far outweighs the risk and God. My trust will remain in Him and not a statistic. I am faithful that he will do well in the cath lab and I ask all who are reading this to do the same. There is a possibility that he will have the procedure tomorrow so in preparation he will be NPO late tomorrow morning in preparation since he will be under anesthesia and on a ventilator for the procedure.

I had to say ‘when’ last night and head to the hotel yesterday when they started the blood transfusion. I am not sure why but it made me feel queasy. So far out of all the procedures and surgeries this is only the second time I have had to say ‘when’ and the first time was when they had to draw labs out of his forehead but apparently the forehead is less painful then the arm or legs because the veins are closer to the surface but I still couldn’t watch. Evan still has his PICC line because they were unable to find any other veins hence the reason for the PICC in the first place and since his cultures are negative they decided to keep it because they need a line to run his milrinone however once he goes in the cath lab they will most likely remove his current PICC and place a new one.

I saw this yesterday and thought it was just for me:

The Scripture says “God has set an end to the difficulty.” The end of that sickness has already been set. He is the alpha and omega, the beginning and the end.   – Joel Olsteen


The hospital can be a scary place especially a Children’s Hospital because it opens your eyes to a world you otherwise wouldn’t know existed and for someone without faith and hope I can see how it would send them into a depression. The first day we got to Boston we were in a double room and we were in the bed by the door which meant we didn’t have a window and the patient by the window had the blinds closed and their curtain closed. I can’t explain to you how happy I was to get to a room with a window. Evan has to be in a room by himself because of the infection. I wasn’t happy that he had to move because of the infection in fact I had asked the nurse if a bed became available by the window if we could be moved and they had one that was coming available the next day. It is the little things but being next to a window and seeing the sunlight is good for the soul!

3 thoughts on “Boston Day 5 & 6 – Update

  1. Zennee says:

    ‘When you make a public proclamation that you have God’s back He makes a public demonstration that He has yours.’ Pastor J. Wilson

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