Discharged

Eli got to come home today. They have him on a nebulizer treatment that puts antibiotics directly into his lungs. They said there was a few things growing on the culture, but mainly e coli. He is doing a lot better now.

Night Nurses

We are no longer using night nurses. We just could not find enough good nurses to fill all 7 days. I think we went through about 10 nurses and we really only liked 1. I called and asked them to switch us to day nurses and requested them to ask the night nurse that we liked to switch to days. I only want help Monday, Wednesday and Friday. I just want someone there so I can keep my house clean and be able to spend some one on one time with my older son Dakota. The agency called back today and said our nurse agreed to switch to days and was also fine with the days we requested. It will be such a relief to not have to deal with people in and out of our house.

Some of the things that really got on my nerves about the nurses. Some nurses would come in and have a know it all attitude. Some would even go as far as asking me stuff like now you know you need to wear gloves to suction. Or just stupid remarks that we obviously know. Then some of them were just lazy and never wanted to do anything. They would just sit and play on their phone. We really like our nurse because she is laid back, but also willing to help as much as possible. She is always quick to get his medicine ready before its time without me asking or reminding her. It's just going to make our lives a lot less stressful and a lot more happy. Plus Eli doesn't like all the different nurses in and out. Now he just has one he can get use to and become comfortable with.

Admitted to the hospital again

Eli was admitted to our local hospital on Monday. He started throwing up on Sunday night and he just wasn't holding anything down, not even pedialite. Then Monday morning before his appointment his secretions (the stuff we suck out of the trach) turned yellow. The doctor wasn't sure what was really going on but he wanted to get some fluids in him and run some tests. He was thinking it could possibly be pneumonia. They took some blood and a culture from his trach secretions. The blood work showed he has an infection, they just had to narrow it down. Today the preliminary culture results came back and he has 3 different bacterias growing right now. I'm not sure what all of them are, but one of them is E coli. They said they should have the full results in tomorrow afternoon. I'm not really sure how long he will be here, they were saying we can possibly go home tomorrow. I guess it all depends on what the culture says. As far as the E coli goes I'm pretty sure I know how it got there and his name is Eli. He has discovered that if puts his finger in his trach he can make noises. He has also discovered this week that he likes to dig in his diaper. He is like Al Bundy. I'm always having to pull his hand out of his diaper. I guess I'm just going to have to start keeping shorts on him while we are at home. He gets pretty hot, but I'd rather him be a little warm than go through this crap.

Update from Eli's doctor appointments today

Today Eli had two doctor appointments in Houston. The first one was for a hearing test to see if the tumor they found in his left ear is affecting his hearing. The first thing they did was check the pressure in his ears. The right was perfect and the left not so much. Then they put Eli and myself in a sound proof box and put these little ear buds in his ears so they could test each ear separately. The right ear was perfect and the left he didn't respond to any sounds at all. My husband was outside the box with the audiologist and he said that she was calling his name and he never looked to the left one time. After that test she took us to another room to check a high frequency sound wave. She said the sound waves would bounce off his ear drum and come back to the ear plug and she would be able to record this and see how well he hears them. Again the right was perfect and the left didn't pick up anything. She said she wants to do one more test before they said he can't hear out of the left ear. She said he has to be asleep for this test and that someone will call me to schedule it. I just wish they would say it instead of drawing it out like this. It's pretty obvious that he can't hear out of his left ear. I mean really how many tests does he have to fail before they just say it. I'm also starting to get impatient with the NF1 situation. How many parts of the body does this tumor have to affect before they say OK we really need to start some kind of treatment to try to slow them down. I understand we are waiting on the clinical trial in Indiana to come through with lowering the age limit so Eli can take their medication. But how long are they going to wait before they take action and do something while we wait. I feel like we are wasting precious time just sitting around and waiting.

Eli also had an appointment with the general surgeon to replace the temporary g tube with the Mic-Key button. I was really afraid that it would hurt Eli, but he really didn't seem too bothered by it. It was a real quick process. They did it in the doctors office. They just laid him on the table and measured what size button he would need. After that they put the button in and filled the balloon with water to keep in from coming out and they were all done. It is so much easier for Eli. There is nothing pulling and causing him pain like with that stupid temporary tube. At least he in comfortable in that aspect now. I just wish we could straighten out all the other issues now.

The before picture with the temp tube

The after picture with the Mic-Key button