I heard someone on tv today say “life isn’t fair so celebrate what you have!” I look at Evan and I am in awe by his spirit. He is happier and more content then most people who have gone through a quarter of the things he has gone through. Imagine how different this journey would be if he didn’t possess the radiant warrior spirit that he has!!
Remember the intuition I was telling you about? Well, it was right again. Since Evan’s surgery I noticed that he was taking longer to eat and he would always desat to around 83 within a couple minutes of feeding. I had questioned it before and the nurses thought he was experiencing reflux. I suspected he was holding his breath while eating which was causing the desaturations. On Tuesday evening I requested a speech therapist come observe Evan while he was eating to determine if he was in fact holding his breath or something else was going on. Since it was late it wouldn’t happen until Wednesday morning. The speech therapist did an evaluation and agreed something was going on and scheduled a cookie test (aka swallow test) where they put barium in his milk and a radiologist watches to see how he is swallowing and ensure the milk is going down the right pipe. The first try showed that he was in fact aspirating meaning liquid was going into his lower respiratory tract. You know the feeling when something goes down the wrong pipe? That is what was happening to him. He can’t saturate if he has liquid where there should be air. The next step is to thicken his formula and watch until they reach a consistency where he is creating a bolus and swallowing correctly so it goes down the right pipe. The thickening agent is rice cereal and he gets 1 TBSP of cereal for every ounce of milk – pretty thick! Evan had been NPO since early Wednesday morning except for the small amount with speech and during the cookie test because the thought was maybe a chest tube if the x-Ray didn’t look better. The x-Ray looked great but the doctors thought it would be best to keep him NPO the rest of the day until speech was back in the morning to evaluate and make sure he was tolerating feeds. He was on maintenance fluids with glucose to take the edge off being hungry. He handled it like the rockstar he is – no fussing and slept practically all night. This morning he had his first bottle with thickened milk and NO DESATS! He ate 3 ozs in no time. My initial thought now that we knew he was aspirating was that it was directly correlated to the fluid in his lungs but the doctors don’t think so. They were very appreciative that I had requested the speech evaluation and we had solved another piece of the puzzle.
For a moment I questioned; did I do enough? Could this have been caught sooner? Why didn’t nurses doctors pick up on it? Etc, etc.. The fact is I can’t worry about what-if but instead what now and we know what is happening and the solution so we will move forward from here.
Since the X-Ray looks so good he has been put back on oral LASIX. The fluid is still believed to be a by-product of surgery. We are almost three weeks from the second surgery and I think it is important to remember that Evan was born with a very large hole in his heart and one valve where there should have been two. His body adapted and learned how to function despite the defect. Then we basically said no that is not right your heart should look like this and function a different way – hence surgery. Now his body is relearning how to function with his new heart and I am confident he will completely recover in time. There is some concern about an increase in pressures in his right lung that they want his cardiologist to monitor. The prayer is once all fluid is off of his lung and he is no longer aspirating the pressures will decrease.
He has had a fantastic day and been very playful and happy!