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