Day 3/Day 4- Update

Hi Everyone! I’m back. I had some techinical difficulties. I hope you didn’t miss me too much :).

I decided to spend the night on Saturday since the marathon was the following day. I didn’t want to fight traffice trying to get back on Sunday morning. The evening was going great until I decided to lay my head on the pillow. I swear there is a sensor on that bed that tells Evan I am going to sleep and the monitors start going off. Around, 12 am Evan’s puls ox Pul detected desaturations in the 70’s. A pulsox looks like a bandaid and goes around one of Evan’s extremities and measures amogst other things the level of oxygen in his blood. The normal reading range for him  is 94 – 99. He had been in the mid-90’s the entire day. He was not showing any type of respiratory distress. They turned his oxygen up and did a chest x-ray. He rebounded very quicly into the 94 range.  Afterwards, he was wide awake so we talk and sang a little before he went back to sleep.

Around 4:30, I could hear the nurse telling the doctor doing her fellowship that he was desating again in the 70 – 85 range. He was not in any type of distress but he was not rebounding. The doctor, respiratory person (sorry, not sure of their official title), nurse, lead nurse for the evening all came in the room. I was sitting on the bed. I didn’t want to move because I did not want to get in the way. The doctor did not believe that the pulsox was picking up the right number. Those things can be very tempermental so they tried every finger and toe and it still said the same thing. The reason they did not believe it is because Evan looked perfectly fine. He was wide awake, looking around and sucking on his pacifier. Typically someone who has low oxygen levels will show signs of distress like blue extremities and gasping for air and he wasn’t. In this case, it was right so they ordered another x-ray which looked much better than the day before they suspected a part of his lung had collapsed again – not the case. They also changed him from CPAP to BiPAP. The same machine for he CPAP does the BiPAP.  The CPAP maintains airpressure in the lungs keeping them up. The BiPAP machine offers more assistance by allowing pressures for both inhaling and exhaling. This allows him to get more air in and out of his lungs. Once they determined it was not a respiratory issue they did another echocardiogram which showed pulmonary hypertension and small residual hole (called an asd). Aha! the problem was solved the pulmonary hypertension and small hole can cause desaturation. Basically, the hypertension causes the blood to flow back to the heart and because of the hole it allowed the blue (de-oxygenated) blood and the red (oxygenated) blood to mix sending de-oxygenated blood to his body. Very similiar to what was happening before the repair and also the reason that he still looked fine. They put him back on nitric oxide and his stats immediately went back up. Evan came out of the OR on nitric oxide but they were able to wean him off on day 2 and he had been tolerating without  it very well for 2 days.

Side Note – The #1 rule if you  have  a loved one in the hospital is don’t watch the monitors. That is the nurses and doctors job. Watch your baby. I was not necessarily worried because Evan looked fine. I eventually got up once the room cleared out and helped to hold his pacifier. For some reason, he won’t keep his pacifier in his mouth so he makes me or a nurse stand there and hold! Which we all happily do.

During, rounds I spoke with the cardiologist and he confirmed that a small residual ASD was left during surgery because of the suspected pulmonary hypertension. The hole allows the blood flow some place to go and is necessary. The hole is very small and may or may not need to be closed and if it does need to be closed eventually they will NOT need to do another open heart surgery they can repair through a catheter.

The remainder of the day was very quiet. Evan really responded well to the nitric oxide. He will remain on the nitric oxide but they will try to wean him off of the BiPAP machine to a high flow cannual. I didn’t mention this before but the nitric oxide is inhaled.



This was taken before he went on nitric oxide.

Later on that day Evan was able to visit with daddy, big brother Cameron and Grandma.

2 thoughts on “Day 3/Day 4- Update

  1. Karen says:

    Missed you and Evan yesterday but I understand about technical difficulties! Love the pictures…and the blog. Continued prayers for Evan to get well soon so he can go home and be with his family!

  2. Angie says:

    I missed getting updates and seeing pictures of the family but I understand. The knowledge that you now possess regarding his respiratory, instruments, and oxygen flow is truly God sent. Look what happens when we ask for wisdom!!! Love ya

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