Feeling helpless

Eli is doing pretty good. They have him sedated and plan on keeping him that way for 3 or 4 days. It is so sad to see him laying there not moving. They drew some blood earlier and tears started falling down his cheeks. It sucks seeing him there and not being able to comfort him, to hold and kiss him. All I can do is rub his face and arms and legs and just let him know I'm there and it's ok. I know him and that probably just pisses him off even more. I've been trying to stay quiet and just let him rest. These 3 or 4 days are going to be hard. Praying the good Lord gives me the strength I need to care for him.

Out of surgery

Eli is finally out of surgery. The doctor said the g tube went perfect and the tumor in his belly didn't cause any issues. He said its just there not really bothering anything. They are taking him to the picu and we should get to see him soon.

Update

Trach and scope of his air way is done. ENT gave me pictures of the airway. He says the trachea area was a little smaller then normal and the left bronchials or hole going to the left lungs is restricted from the tumor. He also said there is a tumor in his left ear. He's getting the g tube as we speak so he should be done soon.

2nd update

Just got a call from his nurse. The ear tubes are in and now they are starting on the trach. We are all just waiting around and Dakota is practicing his mad player skills!

Surgery update 1

They just took eli back. They will be doing the trach. After surgery he will be in the ICU for a few days under sedation. I'll update again later when we get our first update.

Surgery time

Eli's surgery will start around 8:15am tomorrow. I will post updates here as I get them.

Moog Super-mini Backpack

Eli got a new backpack for his feeding pump. We had the regular sized bag by moog and it was way too big for him. We were always following him around like a dog on a leash because it was too long and too heavy for him. This bag has been amazing for him. He now has independence that he didn't have before. It is a little harder to get everything in the bag, but that's only because it is so small that it's hard to get my hands in the bag.

Eli is 20 months old and 20 pounds

The next set of pictures is just to show what I do to prep the feed bag and how I load everything into the moog super-mini backpack. I wanted to make a blog about this because when I got the bag I went looking for better instructions on how to set everything up and could not find anything. I hope it might help someone one day.

I purge all the air out of the feed bag

This is what the bag looks like with no air

I load the bag into the feeding pump

Place the pump into the front part of the bag, between all the stretchy holders to keep it in place

Wrap the velcro strap around the top of the feeding bag. I like to put the bag into the mesh pocket to keep it from moving around, but you can also use the mesh pocket to put a cooling pack.



Wrap the extra tubing and secure it with the velcro. Leave enough loose to put the adapter through one of the exit ports so you can connect the adapter to the person's feeding tube.

This picture shows the red adapter connected to Eli's feeding tube.



I took this picture just to show how big the bag is. The soap is a regular sized bottle of dish soap