10 Changes Since The Last Update

It's been way too long since I posted an update on here. So here are 10 things that have changed since my last post.

1. Divorce 
Eli's dad and I seperated in 2014. It took a while, but we are on good terms now. We Co parent as well as we can considering how far apart we live.

2. We moved to Indiana
The boys and I moved from Texas to Indiana in 2014 after the separation. It definitely makes co parenting more difficult, but it was the right decision for me and the boys. I have more family in Indiana, and it's just nice to have them around.

3. Eli talks
Eli started talking in 2014. He now talks in complete sentences. He can be a little hard to understand sometimes, but it's so nice to be able to have conversations with him.  He's so funny, and says the craziest things. He keeps us laughing for sure.

4. Eli eats a blended diet
Eli no longer eats with a feeding pump. In 2015 we started him on a bolus blended diet. He now eats at normal times like every other normal kid. He uses a brand called Real Food Blends. It's been a game changer for him. He has so much more energy now. He runs, plays, jumps, spins in circles.  He's still pretty small for his age. He's only 35 pounds, but he's gotten a lot taller.

5. I got remarried 
June 2017 I got married to an amazing man named Jason. He's been such a great addition to the family. He's patient, kind, and loving to all 3 of us.  I am so grateful to have him in our lives.

6. Dakota and Eli fight like cats and dogs
You can tell the boys are brothers, because they fight about everything. It gets really annoying, but a few years ago Eli wouldn't have been able to verbally fight with his brother. I just need to keep reminding myself of that, but I am a nornal momma who can only hear fights about the color of the sky so many times.

7. School
Eli started the 1st grade this year. He has an amazing nurse that stays with him at school. The school has been great with making arrangements for Eli, and making sure he has what he needs to succeed in school. They're a great group of people, and I feel blessed that they've made school so easy for him.  Oh and Eli's favorite subject is PE. Who would of thought he would love PE, and his PE teacher would be his favorite teacher. They have a special bond.

8. Stay at home mom
Eli makes it pretty much impossible for me to work. I've tried a couple times to work part time, and I always end up having to quit. Eli always ends up getting sick. We dont have home nursing, so when he's sick I have to pick him up from school and take care of him. It kinda sucks, but we make it work.

9. New trach length
Eli now has a custom length trach. His tumors were collapsing his airway, so they had to make the trach longer to hold his airway open. They wanted to put him on a vent, but we still have a DNR for him. We want him to live life to the fullest, and we think a vent would only make it harder on him to run and play the way he wants to play.

10. New hospital
In September we will be taking Eli to Cincinnati Childrens hospital. They are going to be running a bunch of tests to see if he is a good candidate for airway stents. These stents would be amazing for Eli. His left lung has been almost completely blocked for a few years now by the tumor. If they could put these stents in and hold open his airway it could change so many things for him. We know the tumors can't be taken out, but if we can make life better for him, and he can live a happier and easier life then let's do it.

Well those are the main changes in our lives. I'm going to try and start blogging again. It's still a very therapeutic thing for me to do. I think I'm going to try and do more than just updates on Eli though. I want to be able to share the things that our entire family deals with as a special needs family. I want to share products that help Eli. I want to share how I stay organized as a stay at home mom. I feel like Eli's story touches so many people, but if another mom, brother, sister, etc comes across this blog I want them to see that there is hope for happiness in this crazy life, and that they're not alone.

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.

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.

Home Sweet Home

After 20 days in the hospital Eli and I were so happy to be home. It has been a mad house though since we walked in the door. I've been dealing with medical supply companies, nursing companies, organizing Eli's room and medical supply closet. It's just been non stop. Eli has enjoyed every minute of it though. He was so happy to be home. As soon as I put him down he went straight to the room and started pulling out toys. He's not liking the night nurse situation. I think that if I was comfortable with changing his trach myself I wouldn't need them. Maybe in a few month we will transition to no nursing, but for now I need their help and knowledge.

Our CPR baby. Such and intimadating class. I felt like I needed to just record it for future purposes. It's a good thing they gave us a written instruction paper for home, in case my brain decides not to work.

Eli's first ambulance ride. It was a long trip home in the ambulance, but the EMT's were very nice and chatty.

Today is the first day home by myself. I feel like I haven't stopped since Eli got up. Between trach care and suctioning and giving him his medicine and feeding tube stuff and still trying to take care of Dakota and make sure he is fed and happy too. I've felt a little stretched today. Hopefully as we are here by ourselves more the more of a routine we will get into. Right now I'm just trying to keep up with the sound of my alarm going off for some sort of care Eli needs. I don't know what I would do with out my phone. I have every feed and every medicine set up as an alarm so I won't forget. It's been a life saver, but also sometimes I'm like really its already time for him to eat again, I just fed him. Time has just been flying by. Thankfully both boys are taking a nap right now and I'm sitting on the couch catching up the blog and just breathing in the silence. It's amazing!

Eli's supply closet

This table holds a weeks worth of supplies and misc stuff. the small side table has the suction machine and nebulizer. under the table is spare oxygen tanks, a concentrator and all our travel bags. 

Day 19

Today Eli had to do a 3 hour car seat test. They wanted to make sure that he could handle the car seat with his trach and he didn't have any desaturation of his oxygen. He did really well. He watched a movie the first hour and a half and slept the rest of the time.

All that is left in order for us to go home is to complete our CPR class tomorrow. After that we will be discharged and they are sending Eli home in an ambulance. The ambulance is just in case something happens. We live 240 miles from the hospital and they didn't want to send us home freshly trained and something happen on the side of the road. I'm fine with the ambulance, I'd rather be safe than sorry.
We are so excited about going home, we miss our family and most of all Eli's big brother Dakota.

Day 18

Eli has been doing really well. They have worked him up to almost 4 ounces an hour on his feeds, which is amazing for him. Other then that all Eli really has to do all day is play and watch his movies.

My husband Floyd is down this weekend so we can take all our classes and go home. Today we did our trach care class and had to change the trach ourselves. It didn't go well at all. I changed the trach first and it was hard to put in and once it was in it was bleeding a little. Then when Floyd tried to put his in he couldn't get it to go in. The nurse had to start bagging him and we had to get a smaller sized trach. Then the doctors and ENT came in and checked him and scoped the trach to make sure everything was okay. No one really knows what happened or why the trach decided to not fit. We just hope that every trach change, which is once a month, isn't like this one.

Floyd and I are currently doing our 24 hour room in. This just means that for 24 hours we do everything ourselves. We get the medicine when it is suppose to be given. We ask for the milk and set up the pump for all the feeds. Then of course just his every day needs like diaper, bath and anything else he needs is our responsability.

We are all so ready to go home and just start this. It's getting old being at the hospital.

Day 17/MRI pictures

There really is nothing to report so I am going to fill todays blog with pictures of Eli's MRI. I'll try and explain where they are located in the body.

The bright white is the tumor

The tumor is on both sides of the neck going down

neck/shoulders/lungs

View looking from the shoulders down into the lungs

Same view as above but further down into the lungs

 

torso with the tumor up at the top by the spine

torso view with tumor in chest and abdomen

Torso with a better view of the tumor in his abdomen

Day 16

UGH 16 days in the hospital! Eli and I are both ready to go home. He is tired of being tied down by wires and being woken up in the middle of the night just to get a temperature. I told the nurse tonight I didn't want them to be waking him up. If he is asleep they don't need to get a temperature or anything else for that matter. She noted it and said they would leave him alone. I did trach care completely by myself today, I even changed the collar by myself.

Watching Toy Story with his skinny little legs

The at home nursing company came by and spoke to me about their company and about what to expect and what I expected. They asked when I wanted the nurses in the home. I told them I mainly want a night nurse so I can sleep and be 100% during the day. My patience level drops when I get sleep deprived. He said that with his SSI medicaid he will definitely have enough hours to cover a night nurse 7 nights a week. Tomorrow there is a lady coming down from the Tyler office to meet us and do an assessment on Eli. Then when we go home she will be our contact person.

Day 15

Eli is doing so good. He is finally tolerating his feedings. I guess the new medicine to help speed up his digestion has done the trick. He is also starting to get back to his old self. He is laughing and smiling  more. We played on a mat on the floor a lot today. His favorite toy in the hospital has been an empty baby wipes box that i filled with little blocks, balls and other random small toys. He likes to throw these out of the crib a lot. I just pick them up and put them in the sink and when they've all been thrown on the floor I give them a quick wash with soap and hot water and put them back in the box.

Eli in baby jail

I went to the records department today and got the written report and the DVD of the MRI. There is a lot of stuff in the report. Some of it makes no sense to me and some of it scares the hell out of me. The most interesting thing and the thing that made the most sense was the measurements of the tumors.

Neck:                   9/8/11                      4/30/12
Right side:   18mm x 13mm        18mm x 15mm
Left Side      14mm x 17mm        19mm x 22mm

Chest:
Top:             54mm x 25mm         58mm x 33mm
middle:                 5.2cm                       6.4cm

Thorasic Inlet:      5.5cm                       6.6cm
periportal region   3.3cm                       3.7cm

Some of the things that are in the report that scare me:

1. Persistant encasement of the great vessels, trachea and esophagus.
2. Small extension of the lesion into left skull base with involvement of the meckel's cave, cavernous sinus, pterygopalatine fossa, retromaxillary area, infratemporal region and vidian canal is identified.
3. Encases the trachea and the main stem bilateral rhonchi.
4. Extension of lesion into the liver, following the portal triads.

I have no idea what half of it means. Eli's oncologist is out of the country for work. He will be back after next week. I know he will explain everything to me with detail and reassure me of the things that sound bad. He is always very honest and upfront with me. Some doctors hate to be the person to give bad news so they just say I don't know what all this means, I'm not an oncologist and only explains what certain words mean.

Having faith that everything is going to be okay can be really hard sometimes. I find myself thinking about the potential deadly side effects this tumor has and I start crying. How is someone suppose to feel when they see their child unhurt, but so broken with no way of fixing him. I hate neurofibromatosis and what it has done to my sweet Eli. I hate that it has no cure or quick fix. I hate that the Lord has so much faith in me that he would give me such a hard task. What am I suppose to learn from this. All I feel is sorrow and all i want is for this nightmare to be over with. That is just how I feel today. Maybe tomorrow will be a better day.

Day 14/MRI Results

We got the results for the MRI today. As we expected the tumors have grown. They are pretty concerned about the one in his chest because it is wrapped around his lung and some vessels. We were suppose to send the vent back to the medical supply place and the doctors told them we need to keep it in case of an emergency. It's pretty heart breaking to hear people say oh these tumors don't grow and then get these results. I don't understand what is going on. I don't know what to do or how to do it. I'm at a loss of words and feel so sad and so angry that this is happening. My poor sweet Eli is oblivious to what is going on. I'm going to be getting the written report and the DVD of the scan sometime this week. When I get it I will post some of it because I don't know how to explain everything.

This is the tumor in his chest. Picture yourself looking down into his chest from the top of his head. The spine is the little white circle at the bottom and all the white in the center of the picture above the spine is the tumor.

Another view: The tumor up top is the white, the black in his lungs is air. I'm not sure what is going on in his abdomen so I can't explain all that.

My Sweet Baby Eli

Day 13/MRI

Eli got his MRI today. They had some people cancel so they went ahead and did all the scans today. It took about 4 hours. He went to sleep fast and woke up just fine. He was snuggling the nurse when I went back to see him. They said we should know the results tomorrow.

As far as feeding have gone. He was NPO after midnight so it's kinda hard to say. He started back on the formula at about 4 or 5 tonight. He hasn't thrown up yet, but he has only been on the feeds for about 5 hours and they are pumping it really slow. The rate he is getting right now is 1 oz an hour. Tomorrow we will know more with how he is doing on the new medicine and if it will work for him.

This is called an HME or artificial nose. It heats and moistens the air that he breathes through the trach

We will probably be in the hospital until next Monday. I still have to take the CPR class sometime this week. I'm not sure when that is scheduled. Then my husband and I both have to take a trach care class and my husband is only able to come down here to Houston on the weekends. So our trach care class will be on Saturday. If everything looks good we will get to go home Monday. It seems so far away. Eli and I both miss our family. It really stinks that we have to be so far from home just to get the care he needs.