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.

Day 12

Eli had a fairly uneventful day today. The medicine the doctors started him on to speed up his digestion is helping, but it is also giving him diarrhea. He has pooped like 10 times today. He did throw up once and burped like he was going to throw up two other times but nothing came out. I'm going to give the medicine a few days and see how he does. They let Eli get out of the room today. He went for a wagon ride all over the 7th floor. He just sat back and took it all in. I think he liked looking at something other than what's in his room.

Eli going for a ride

Tomorrow is MRI day and I am anxious to see the images and find out if this thing is growing and how much. I already feel in my heart that it is growing because you can see the tumor in his neck much more than you could back in September when he had his first scan. I just hope he gets into that clinical trail up in Indiana. I don't know what the doctors will do if it shows a large amount of growth and the clinical trial ends up being a bust. It's one of those things where we will just have to wait and see and hope for the best.

Day 11

Eli did really well on the 24 hour no vent trial. He is still off the vent and doing amazing! He is still having problems throwing up though. The GI team came and seen us today. They are putting him on a medication that is suppose to speed up his digestion. If the medication does not work and he continues to throw up then they said they will start running a series of tests to see what the problem might be. It just really sucks. We were all hoping that getting the g tube would just fix his throwing up. It's really disappointing. I'm glad we are still in the hospital though so they can work on getting him better. The plan is with this medicine we are going to work him back up to his normal feeding schedule that he had at home before the surgery. Also on Monday and Tuesday he is going to be getting his MRI's. Monday he will get his brain and neck and Tuesday he will get his chest and abdomen. They split it up because if they did them all at once it would take over 4 hours and they don't want to sedate him for that long. As long as we get the MRI's I'm happy.

Eli's Daddy and brother came to visit this weekend. It is so nice having other family around. I taught my husband how to suction and he helped me do trach care. We did it all by ourselves without a nurse. I think I am starting to feel more and more comfortable in taking care of him and knowing what he needs. I've had to relearn his sounds because they are different with the trach. Even his yawns sound different. As a mom you learn what each cry means and whether a cough is a sick cough or just a random cough. It's weird to kinda have to start over. I was a little jumpy to the new sounds at first. but I'm slowing starting to figure them out.  Everything takes time I guess.

Day 10

Eli is on a 24 hour no vent practice run. It's been so nice to hold him and get one of his hugs. He's been doing so well on it. They put this thing on the trach called an artificial nose. It acts as a filter and warms the air. He really likes not having the tubes everywhere.

Eli with his artificial nose

His feeding haven't been going too well. He just keeps throwing up. I don't know what's wrong and neither do the doctors. I asked them today what's the next step. I know they have something called a gj tube that pretty much bypasses the stomach and puts the food in the intestines. There is also a surgery where they would close off the top of the stomach to keep him from throwing up. I'm not sure what they will do, but he can't keep doing this. He's not even getting enough food to keep him hydrated. They had to hook him up to iv fluids. I just wish we could figure this thing out.

Day 9

There's not much to report today. Eli is not quit back to his old self. A little sleepy and he doesn't feel like playing much.
The trach he has in right now has a little balloon that the doctors inflate to keep the air in his lungs. Today they deflated it in hopes it would help with the throwing up issues he has been having. They said it might be that the balloon is irritating his gag reflex. It has helped a lot. He threw up a few times but not very much. When we put a new trach in next week the doctor wants to put in a smaller size to see if that helps even more.
Today I have done most of his care on my own. I am suctioning him 100% of the time with no help. You have to do trach care twice a day and I did most of it. I'm still trying to figure out the motions of that one. It seems so awkward and out of sync. It's going to take time to find my own way of doing it before it feels natural.

Day 8

Eli has been really sleepy today. The doctors said to try and keep him up as much as possible so he will sleep tonight. I've been distracting him with his favorite movies and trying to keep him entertained with toys.
They are trying to wean him off the vent. Today they took him off the vent for 4 hours and then checked his blood gases to see how he did. They said that he was putting out too much co2 (breathing too fast is the non doctor term) and that tomorrow they will try again and see how he does.
He also had physical therapy today. They made him pull to standing and also tried to get him to crawl. He worked really hard. The therapist and I are in agreement that he is holding himself back because he is afraid to move certain ways thinking it will hurt him. He did really well though and hopefully he starts to gain confidence soon.  
I've been watching the nurses like a hawk and trying to pick up as much information from them as possible. Today I suctioned him for the first time and later when we clean the trach site I'm going to ask to help as much as possible. They said I won't take the trach class until I've had some bed side training, that's why I've been trying to watch and learn as much as possible.
The care coordinator came by today and she is setting us up with a medical supply company and an at home nursing company for when we go home. She said that they will set up for an ambulance to take him home, which is nice because I was kinda worrying how that was going to work with us living 240 miles from the hospital.

Day 7

Today has been a weird day. Eli's lungs look good and he is breathing better, but now we are having issues with his stomach. He has been throwing up off and on all day. They have been playing with how fast the formula pumps into his g tube all day. So far nothing has worked. I'm starting to thinks its one of two things. He is either dizzy or he has a stomach bug. When he sits up he gets this look on his face and wants to lean against someone. That's why I think being dizzy might be to blame.

On a good note we did get to move out of picu and into pcu which is an intermediate floor. We have our on room with a bathroom and a couch for me to sleep on. They said he will be here the rest of his stay since he is on the vent and tomorrow I start my training. I got a huge binder with all the stuff I have to learn including a cpr certification class. Lots to learn before we can go home. I'm already thinking about how we are going to drive him 240 miles with the trach. Not really sure how that will work, but I'm sure they will teach us. It's been a long day and I'm ready for bed.

Note To Self

We have been in the PICU for 6 days now and these are some of the things I have learned. Someone else is always going through more then you are. Since being here I have seen several families loose their children. I've seen them in the waiting room trying to decide do we pull the plug or do we wait it out. I've spoken to them and prayed for them. I've seen their sadness and confusion. I've learned the dreaded sound of the alarm going down the hall to take a child to surgery so they can take their organs and donate them to another child sitting in another ICU somewhere. I've seen the families gather in a large group in the waiting room and enter the ICU 2 by 2 until they have all said their goodbyes. I've seen siblings playing in the waiting room, but having a look of knowing that something isn't quit right. It's really been an eye opening experience for me. I know Eli has a rough road and has had to go through so much for such a little guy. But I also know that there are families going through so much more. People say I am strong and I am a great mother, but I'm just doing what most moms would do and that is stand by their child no matter what. If anyone reads this say a prayer for the families who have lost a child today. Pray they find peace and understanding. Pray they stay strong in their faith and lean on their friends and family.

Day 6

Eli has had a very rough morning. They changed out his trach at about 7:30 to the smaller one. They also started taking him off all the sedation and pain meds. About an hour after the trach was changed his oxygen started to drop into the 60's. They bagged him and suctioned and they weren't getting anything out. ENT came and did a scope to make sure the trach was in the right position. Then they did an x ray to check his lungs. They said that he has a lot of fluid in them which is understandable since he has been on all the meds and laying down for 6 days now. They started him on these weird breathing treatments where this machine pulsates air into his lungs while giving him medicine at the same time. It's kinda like a breathing treatment with a nebulizer but completely different.

Right now he is resting comfortably, but we are going to be in the ICU for one more day because of all the problems with his lungs. They did end up giving him some methadone today and now they are just waiting to see if he will need more or if his body is good to go without any medicine.

Day 5

Today they took Eli off the paralyzing medicine they had him on. He's still on the sedation medicine but he is kicking around and trying to roll over. He's even opening his eyes a little. He's also giving the nurses hell. He pulled the tubes that go into the trach out a few times already so they put him in some soft restraints. Tomorrow they are suppose to change the trach to the smaller one and start taking him off the sedation medicine. They warned me today that some babies who have been on these meds for this long may go through withdraws. They said if they see signs of that they will put him on methadone and some other medicine to help him through the withdraws. I really hope they won't have to put him on methadone, but if it will help him then I guess that's what we will have to do.

I also wanted to say a big thank you to everyone who commented here or sent messages on babycenter. You guys are amazing and have really helped me get through these first 5 days.

Day 4

Eli is still sedated and on the paralyzing medicine. There really is nothing new to report. They upped his meds the other day and since then he hasn't been kicking and getting mad like he was before. We are just hanging out and waiting for them to say its time to wake up.

Day 3

Nothing new to report today. He's still sedated and they plan to keep him that way until day 5. They told us this morning that his echo was normal. The only thing they saw was his left top part of his heart is a little bigger, but its not causing any issues and blood is flowing the way it is suppose to. They started giving him pedialite in his g tube today. It's only 5cc an hour but so far he is tolerating it fine and there is no leakage right now. Other then that there is nothing to report except everyone else went home today. It's going to be lonely until he wakes up. The waiting room has some books, so I guess I'll be reading a lot.  

Day 2

Eli is doing good today. They still have him what they call paralyzed. It's like a medical coma. He has been moving around some though and kicking his feet. They did an echo of his heart this morning. They're concerned the obstructive sleep apnea has affected his heart. The doctor said they probably won't come tell us the results of the echo until tonight. It just confirms for me that we made the right decision to get the trach.

It's nice to see his personality show even when they have him all druged up. The nurse likes to keep the kids covered up when they have lots of tubes and stuff on them. Eli will kick both legs until she takes the cover off. He hates to be covered up because he is hot natured. He can feel like an ice cube and still won't let me put a cover on him at home. It's nice to see its the same here. I'm praying he heals quickly so they can wake him up. I'm ready to see his smile and feel his sweet hugs.