Scope-a-palooza

This is just a mini update to let everyone know that Eli will be have a bronchoscopy and endoscopy on the 6th of March. The bronchoscopy will be checking on his air way. They want to see if it is still narrowing due to the tumor or if they are kinda holding their own and staying open. The endoscopy will be a first for him. I have been asking them to do one for awhile because I believe that the tumor has some how cut off or maybe made the esophagus not work properly. The reason why I think this is because anytime Eli tries to swallow whole food its like it gets stuck and the only thing it can do is come back up. I pray that I'm not right and that eventually he will be able to eat by mouth some what, but honestly I'm not an optimistic person. I always look at the what ifs in life. I know I shouldn't but its just part of my personality. Anyways I will be updating his facebook that day, it might take until the weekend before I get a chance to update here on the blog.

Feeding Tube Awareness Week 2013: Eli's Feeding Tube Story

Eli was born a healthy 8 pounds 9 ounces. He had trouble gaining weight from the very beginning. His main problem was he would randomly projectile vomit. The vomiting went from once a week to after every feed. His pediatrician ordered an ultrasound and an upper GI. Both tests came back normal. They said it looked like he just had reflux and he would grow out of it. At 6 months he was still vomiting pretty frequently, but there was a new symptom. When we introduced solid food he could not swallow it. This is called dysphagia. It just means difficulty swallowing. His pediatrician sent him for food therapy. After a few months he still wasn't progressing. Finally we switched pediatricians and got a referral to a GI specialist. The GI doctor is the one who discovered he has NF1. If it wasn't for her I'm not sure where Eli would be right now. She listened and didn't think I was some crazy mom who had Munchhausen  After a few months under her care we had to finally make the decision to put him on a feeding tube. On October 18, 2011 he had his first NG tube placed at Children's medical center in Dallas. We spent 3 days in the hospital so I could learn to care for him with the feeding tube. I had to learn to place the NG tube, which was terrifying. Shoving a tube down your kids nose is something that just isn't natural, but I did it for him.

Eli after getting his first NG tube 10/18/2011

 Eli had the NG tube for 6 months. It was a long 6 months. The NG tube did its job, but it was a pain in the butt. We had to change it once a week. It leaked all the time. It has this little Y port where you connect the feeding pump adapter. It would come apart all the time and soak everything. We were so happy when he was finally approved to get the G tube. On April 18th, 2012 Eli had surgery to have his trach and G tube placed. I was under the impression he would go straight to what is called a G button, but instead he came out with something called a bard feeding tube. They wanted it to stay in for 6 weeks to form a good stoma.

This is the bard feeding tube the day he had it switched to a g button 

The bard feeding tube was worse than the NG tube. This thing would get caught on everything, which really hurt Eli. We had a hard time keeping it from being irritated and infected. We were over the moon when he had his G button placed on June 5th, 2012.

Right after his G button was placed

The button has been amazing compared to the NG and bard. It doesn't get pulled and it doesn't leak. He has really improved since getting the button. It's easy to clean and easy to feed him with it. Eli was about 15 pounds at 14 months when he got his NG tube. Now he is 2 1/2 and 23 pounds. He's still small, but he has put on a lot of weight and doesn't look so sickly any more.

Eli eating

The things we need to feed Eli. His formula, feeding tube extension, 60ml syringe and 10 ml syringe

We add style to Eli's button with the help of Patchwork Peddler G tube pads

I love this Logo from feedingtubeawareness.com

Change is good

Eli got a nurse so i can go to college. Things have been going really well. She has been with us for 2 weeks now and Eli likes her. She's been a fast learner and she isn't pushy. We had a lot of problems when we tried nursing right after Eli got out of the hospital, but this time has been twenty times better.

There are really no other updates. Eli has a lot of doctors appointments next month, but they are all just check ups. I'll update at the end of next month to write about how the appointments went. I don't have any new pictures of Eli so I will try and take more pictures this month to add to next months update.

Sorry

I am so sorry for the lack of updates. We haven't had the Internet since summer and updating from my phone is hard. Since the last update Eli had a new MRI done. The MRI did show growth of the tumor. The doctor at MD Anderson is now working on getting a protocol together so Eli can start some medication. He says it is a mild chemotherapy drug. Most side effects are stomach related. He says he won't loose his hair or anything like that. In December Eli got a really bad stomach virus. Since then we had to change his formula because for some reason he just couldn't handle the old formula any more. After that virus he had some blood come out of his g tube stomach content. It was this weird purple brown color. The next day his poop turned black, which indicated there was blood in his poop as well. The GI doctor ran some blood work and started him on some ulcer medicine. She said if it happens again she wants to scope him to see where the blood is coming from.

I forgot to mention that on Halloween Eli started walking! We were so proud of him and it still amazes me today to see him doing so well. He still is not tolerating the speaking valve, which is heart breaking. I wish I could hear him talk. I think that is everything. I promise I will try and start updating the page more often. I've also made a facebook page for him. Follow the link and like his page. I'll be able to update more frequently from there. I just started it today so give me a few days and I'll get pictures and things added to it as well. https://www.facebook.com/ElisJourney

It's been awhile...

It's been a while since I've been able to update. We moved and things have been kinda crazy around here. Eli is still getting sick about every other week. I'm not sure what the deal is with that. We have germx in like 4 different places in the house and even Eli knows how to put some on. We have managed to stay out of the hospital though, so that is a good thing. We saw Eli's oncologist around the first of the month and he said that Indiana finally called and said they got the approval to lower the age limit on the clinical trial. He said we should hear from them to set things up. I haven't heard anything yet so I think I'm going to do some google searches and find the number to contact them myself. I just have to find the time to do it. Speaking of time I've been busier than usual because I decided to get rid of all the nurses. It was more of a pain to have them around than it was helpful. I'm super picky about the way I like things and some nurses we had just seemed so unorganized and never put things back where they belonged. Eli is happy though. He seems more at ease now. He knows if someone comes in his room in the middle of the night to do medicine or breathing treatments that its just his mom and he will just roll over and go back to sleep. We also set up an appointment with MD Anderson in Houston to get a second opinion on Eli's tumors and how to treat them. The appointment isn't until the end of August, but I'm looking forward to hearing what someone else thinks about the growth rate and the tumors invading important spaces like his lungs and liver. Sorry this blog is all over the place but I'm just trying to get this updated while the boys are in bed and I still have the energy to do it.

Also we joined a foundraiser for NF. It is the dallas/fort worth NF walk 2012. It's going to be on October 13th. I've never been good at fundraising, but I figured every little bit helps since the money is going towards finding a cure for NF (which is what caused Eli's tumors). If you want to help out and donate check out the website. We named our team Team Eli.

http://ctf.kintera.org/faf/donorReg/donorPledge.asp?ievent=1031859&lis=1&kntae1031859=5B90FCB627E44A05B0F65241B094B37C&supId=0&team=5136833&nmv=true

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.