On Wednesday of this week Memphis had an interesting doctor visit. Over the past couple of weeks his saturation monitor stat has been low, meaning that his blood oxygen saturation is low. We have only been hooking him up to the monitor at night, but his normal rate of 98 to 100 had been replaced by a normal of 90 to 93. 90 is typically as low as they want them to go. On Monday night, Memphis had a regular reflux during the night, but it took him extra long to recover from it. Rather than it being a 30 second ordeal, it turned into a 10 minute struggle for him to recover his breath and calm down. During this fight, his voice and cry seemed to change. It went from his normal cute little cry, to a very hoarse cry. After another day of hoarseness, we decided to take him in to see the doctor.
Previously, at our prior doctors appointment, I had mentioned to the doctor that our saturation monitor had been going off alot during the night while he slept (reaching numbers below 90) pretty regularly. He seemed to just blow it off as equipment failure, since we technically aren't supposed to have the monitor anyway. But this de-sat that he was experiencing continued and continued to get worse. Reaching numbers below 80 at some times. We really felt that it was the monitor like the doctor said. In this appointment Memphis had a saturation of 100 percent on room air, which also confused the issue. This time on Wednesday when we took him to see the doctor, his saturation level was 87 percent. This concerned the doctor, as it should have. After the doctor consulted with the hospital, they both decided that he needed to be admitted.
Memphis was placed on the fifth floor, in the respiratory distress area. Our doctor in Huntsville had told the doctors here that he felt that he had aspirated on some reflux, and now had aspiration pneumonia. Coming in the hospital, that's what everyone thought it was. Our nurse in the beginning after listening to him wasn't convinced. They put him on oxygen which immediately fixed his low saturation, and then they started planning the tests. They first gave him a chest X-ray, which resulted in an all clear for pneumonia. At this point the surgeon discontinued his feeding for the night, so that they could perform an upper gi on him in the morning. They placed him on fluids, and let us ride out the night. In the morning after the upper gi was completed, at around ten, they informed us that his fundoplication was still integrous. This was great news, being that if it wasn't still wrapped then they would have to do surgery to fix it. So now we are at the point that there isn't anything specific that is causing his desaturations, they called in pulmonary. The pulmonary doctor came to see us and after a few minutes of talking he left to go discuss it with his supervisor. I spoke to him about the risks of us being in the hospital with Memphis(flu, RSV, and the list goes on), especially with us being here right along with the other children that are suffering from these illnesses, with which he completely agreed. After a while his supervisor came in and said pretty much the same thing I said. He said that he needs to go home on oxygen, but he definitely needs to go home. He stated that a child looking as good as he does doesnt need to be in the hospital where he can get really sick. He said that with his chronic lung disease, any little thing can push him to where he needs oxygen.
So now we wait. Everyone has said that we need to go home; pulmonary and surgery. They have started his feed back up, placed him on a new medicine for reflux. He has one more test that shouldn't take more than a few minutes. Now if we could just get the doctors on the ball to get us out of here it would be great.
On a side note, everyone has commented on how big he is, and how good he looks. He is almost at the fiftieth percentile on the growth curve. Dr. Anderson stated that most all CDH babies don't even place on the curve in the beginning. Hopefully this just shows how strong he is. He is a little fighter, but this time he needed a little help. We are so grateful that this help is available to him.
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