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.

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

AFO Leg Braces

Today Eli got his AFO's! They are so cute. We have been waiting on these things since like the end of March. Everything looks like it fits good and he is tolerating them pretty well at this point. They gave us a wearing schedule to follow for the next 7 days. After 7 days he should be able to wear them all the time unless he is asleep. I'm also suppose to look out for any redness or anything unusual over the next 7 days. If I see something I have to call and make an appointment for them to make some adjustments to the braces.

We have been so busy the last few weeks. We have been to Houston twice and Dallas once. Today we had the appointment to pick up the AFO's and then we had a pediatrician appointment because Eli's oxygen saturation has been lower than normal. The pediatrician sent Eli for a chest x ray and to have a blood draw to check his blood gases. I was a little nervous after they got the blood gas results. The lady who did it called the pediatrician and was telling them all the numbers from the blood draw and said they needed to know what to do because the numbers were critical stats. I really thought they were going to admit him to the hospital or something. Thankfully because we have oxygen at the house they gave us our instructions and sent us on our way. They are saying he has a lung infection. They put him on antibiotics, nebulizer treatments every 4 hours and oxygen 24 hours a day. Hopefully this is just a lung infection and not his tumor trying to cause any more issues.

Infections and Granulation Tissue

Eli was suppose to go get his leg braces Thursday, but instead we had to make a trip to Houston for the surgeon to check out his G tube. Ever since we got home the G tube has slowly been getting worse and worse. He has just been so active since we got home compared to when he was in the hospital. Now that we are home he has got it caught on things, stepped on it, pulled at it. It was just not a happy g tube site. The surgeon took a look at it and confirmed that it was infected and prescribed an antibiotic. They also hooked us up with some tube stabilizer things and a mesh belt to wear around his stomach to keep the tube from hanging and getting stepped on and pulled on. The medicine and all the goodies they gave us have been working beautifully and the redness is already starting to go away. Now we just need to keep the site happy until June 5th so they can take that stupid tube out and replace it with a button. I am so looking forward to the button.

Eli's trach site has also been a little weird since we got home. When we got home we had to transition from having all sterile stuff in the hospital to just "clean" stuff at home. In the hospital we used sterile water to clean his trach site and g tube. At home we were told to use a mixture of half peroxide and half saline water to clean the sites. Well not even two days after getting home he started to get this white stuff around his stoma, or trach site (the technical term is actually stoma). Anyways I had his pediatrician look at it and was told to stop using the peroxide because some kids skin just doesn't like it. So we stopped using the peroxide and have only been using the saline water to clean during trach care. Well the white has been growing. I called his pediatrician and also asked a great group of parents on tracheostomy.com what they thought. We have an appointment to see the ENT on Tuesday to have the stoma looked at. The parents on the trach forum think its something called granulation tissue or granuloma. All the parents said they had dealt with it and some kids just grow the tissue and sometimes once its removed it won't ever grow again and sometimes it keeps coming back. I guess its one of those things where it just depends on the kid.

Possible granulation tissue

Here is to hoping that everything starts going smoother and Eli starts to have an easier time with things.

Therapy and Night Nurses

Eli is doing so great at home. We are back to our home schedule, except for our new medicines, trach care and feedings are different but it's not too bad. Eli loves being around his brother and just having the freedom to do what he wants and go where he wants. I miss his voice though. His speech therapist is working with him to get use to a speaking valve, its called a passy-muir. We tried it a few times in the hospital but he hated it and would throw up and just freak out. Eli's therapist has slowly gotten him to wear it more and more. Today he wore it for 10 minutes. It was amazing. I think he has finally figured out that he can still breath with this thing on. Now we just have to try and get him to realize that he can talk with it on too. I can't wait to hear his sweet little voice again.

Eli's Passy-muir

Eli has 3 different therapist. He gets occupational therapy, speech therapy and physical therapy. Each therapist works on a different skill with him. I was telling his physical therapist the other day that it is hard to believe that he is almost 2 years old. He is still so small and with him not walking or talking he seems more like a 9 month old. It will be nice to see if he can really blossom now that he can sleep and get all the nutrition he needs. He will be getting his AFO's or leg braces on Thursday. I will post pictures and write about how all that goes. My hopes are that they will help him walk. If he is still having problems with the AFO's I think his physical therapist wants to get him a walker. I'm cool with what ever will help him get to the next level. Eli's occupational therapist works on all his hand eye coordination and fine motor skills. She is also working on getting him a belt to protect his g tube. He is so active with crawling and he loves to climb that his g tube site is starting to get irritated. I hope she gets the belt in soon. I really hate seeing him uncomfortable when there is an easy fix.

Eli hanging out outside

The 4 bags that have to go with us when we leave the house, Red emergency bag, suction machine, O2 meter and his feed bag. I feel like we are going on an overnight trip with all this stuff.

The night nurses have been an up hill battle. I have seriously thought about just not using a nurse or switching to a day time nurse. We have had about six visit us so far and we have really only liked one. One the nurses I caught sleeping. I called the company and let them know I didn't want her back out ever and they asked why. I told them she was sleeping and they suspended her and now there is like this huge investigation through the company and with some other agencies that represent disabled people. I guess they consider it neglect. I just really don't know what I want to do with the nursing situation right now. It really has me aggravated. Plus Eli is sleeping so well the nurse really doesn't have to do anything but give him his 1am medicine and make sure he doesn't get tangled in all the lines. I guess I have some serious decisions to make when it comes to his nurses.