Apparently James had a rough night last night. He had three or four of what we call ‘spells’ where his sats dropped. Sats refer to the level of oxygen in the blood. A “normal” reading is between 95 and 100 percent, but this normal reading can vary depending on the particular patient and their underlying issues such as lung diseases. In James’ case, because he is unable to suck or swallow, and therefore unable to clear his own airways, a drop in sats is usually a sign that he needs suctioning to clear is airways (nose and throat). Normal suctioning didn’t seem to bring his sats up so they bumped up his oxygen a bit which seemed to help.
They ordered another EEG to see if he was having seizures, but he doesn’t seem to be having them so that is good news. We were cautioned that just because he didn’t appear to be having seizures during the EEG doesn’t always mean that he doesn’t have them. He might be having seizures, but he just didn’t happen to have any during the EEG.
The speech language pathologist stopped in to work on James’ oral motor skills. One thing we discussed was his ankyloglossia, or tongue-tie. James has some tissue that connects from the tip of his tongue to the bottom of his mouth so he is not able to move his tongue around as freely as most of us can. Having a tongue-tie can affect the way he eats and swallows. James has been tube fed since birth so we were wondering if clipping some of that tissue under his tongue would allow him to start eating by mouth. They do not want to clip it yet because they are worried that it might cause his tongue to fall backward enough to obstruct his throat. We obviously don’t want that! But if there is potential for him to suck and swallow at some point in the future, we may revisit this.
The occupational therapist also stopped by today. She showed us some simple moves to work on when we are there. She was getting James so relaxed and he kept letting out these cute little sighs.
Yesterday they starting him back on 10 cc of breastmilk over an hour. Today they increased it 15 cc, but over a 2-hour period. He is keeping his feeds down and not aspirating. He is also giving us good diapers so we know he is digesting his meals.
They have discussed reducing his oxygen a bit or maybe try real air to see how he handles it.
