1 Year Adjusted

Today is Nicholas' 1 year adjusted birthday. This is the day he should have been born a year ago. A lot has happened the past few days. Tuesday he got a port placed instead of a Broviac. This is a permanent access site for IV fluids, IV meds, and blood draws. It is common for cancer patients. The surgeon felt this was the best thing to do since it is so hard to find a vein and they had a hard time getting a Broviac in a few weeks ago. It sucks but at least he won't be pocked a million times each time he has a shunt malfunction. The port has to be flushed once a month and a home health nurse will come to our house to do that.

Neurosurgery has let peds take over for a while to rule out any reason besides Hydrocephalus why he isn't eating. Yesterday an ENT doctor did a scope of his throat. He commented that he probably isn't a good eater and that his vocal cords are very immature. He said they look like a newborns. He also said that it looked like he could be having some reflux. He also had an echo of his heart done yesterday. The pediatric surgeon who placed the port ordered an echo because he thought his heart looked enlarged. Everything is fine and his heart is normal size.

Today he was supposed to have a sedated full GI scope but there was an error in booking the OR so it is rescheduled for tomorrow. He has started to eat more. Today we are up to 18 ounces of baby food and formula combined. He only had 7 ounces yesterday and less all the previous days. He is more willing to eat the baby food than drink the formula. The GI tomorrow will give us an answer about whether or not he has reflux or some kind of irritation that is causing him not to want to eat. They are going to place a feeding tube while he is sedated so he doesn't feel them putting the tube down his nose. He can still eat orally with the feeding tube but he needs his nutrients so he has to get it. The G-tube has also been brought up but that will be a last resort if he doesn't start eating.

All of his stitches were removed today. If he was eating normally, we wouldn't think anything is wrong with him. His eyes have been crossed but are improving. Now I'm wondering if he really did need to power through this shunt thing and the not eating isn't Hydrocephalus related. The peds doctors said that it isn't uncommon for kids who have been so sick, had so many surgeries, and in the hospital for a long time regress and stop eating. He might just have to work his way back up. I asked for a speech therapist to see him to work on the eating. He has missed PT, OT, and Speech at home for 4 weeks in a row. He is happy and active so as soon as he eats normally we should be able to go home.