Luke spent most of the yesterday at the hospital. He was sedated and had an MRI/MRA - the MRA is a longer, detailed look at the veins and arteries. This was done to get a better look at the tight, swollen area that the ENT doctor saw when Luke was scoped. We hope to know some results this week, but may not know everything until we see the doctor on November 3rd. We hope the area is safe for him to easily go in and dialate without any problems. He was concerned during the scope that a vein or artery could be lesser against the tight area, which would require a more serious surgery to fix.
Luke woke up pretty quickly and was breathing fine on his own. Last time he was sedated it took a while for his pulse-ox level to get back to normal, so this time we brought an oxygen tank in case we needed it.
Luke also had his Medical Home Clinic appointment in the afternoon. He visits the clinic every 3 months, but they monitor his weight weekly, adjust his feeding/nutrition often, and this is the team who we call about most of Luke's issues since they see him the most and know him best.
No big changes. Now that he his feeding tube has been changed to a G/J, his throwing up is a lot better. We are leaving his calories the same, but since he has been tolerating feeds well, we will try to get more into him each day. We are also going to see a new GI doctor for a 2nd opinion. Luke still has a number of stomach issues that are not being addressed, so we will keep trying until we find someone who will listen and act on our concerns.
As Rachel promised, we will do our best to update more regularly. It has been an extremely difficult year and many things just do not get done. We will share some new pictures soon.
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