sayin see ya later...

It is so beautiful outside today. I have a great view of the mountains (and 2 parking garages.)

I have taken for granted the feel of the cold winter air on my face.

Thankfully, we are being sent home from our "home".

I feel at peace with our life long journey. It has been some of the hardest, yet most rewarding, experiences in my life.

I look at 2010 and sigh. It was such a hard year. So many things happened. We spent most of the year in the hospital.

Not the way I wanted it.

As the end of the year comes to a close I feel like my family was/is so blessed. We are bringing this last chapter to a close.

I am laying I'm bed snuggling with Zachy. May all you have a safe new year.

Here's to 2011!

More bad days and a bad night...

I am sitting in the corner of our hospital room watching the nurses clean off my Zachy and change his bedding for the 4th time in the last 2 hours.

I feel utterly helpless.

He is in pain and is not keeping anything down.

I know this was the best choice for us. I don't regret the surgery we just had.

I know it will be the best thing in the long run.

We just have to make it through all of this.

Right?

We are going to make it through this.

We just have to make it through this...

a quick post...

I really haven't been ignoring this blog, apparently the email address I have to blog with doesn't want to post them.

I will be adding more later.

Zach is back in the hospital. We were readmitted yesterday and given the diagnosis of communicative hydrocephalous.

His head isn't draining the fluid it needs to. They will at some point in the next 2 weeks be placing a Shunt in the right side of his brain. Zach has an infection in his bowels. They can't operate with any infection in the body so for right now they are placing a drain in his spine.

We will be up here @ PCMC for at least a week.

Merry Christmas to us!

The sound of silence...

We are home. It is wonderful.

For me, however, being home brings with it fear, anxiety, worry, silence, and more often than not tears.

I can hear people thinking, but Jenn your home! You are in your own space, no noise, no one bugging you ever 4 hours to take vitals or make a poop check.

All that is true. I feel the same way. I AM happy to have those things again. But those things are GONE!

I have sever Post Traumatic Stress Disorder. It is under control 90% of the time. The other 10% can be SO debilitating.

I am on alert 24/7.

It's the morning now. I fell asleep while typing this post. Haha.

The night was really hard. Zach woke up at least. 4 times in a lot of pain. He had thrown up a few times and I was SO worried. After giving back the meds I had just gave him, I called our neurosergon. He gave me reassurance that because he didn't have any other symptoms he was okay.

I did okay for the most part. There was the one part where I woke up to him having gotten out of his bed and was trying to join me in mine!

I asked what he was doing. He said, I dettin out a bed. Mom I need you. After getting him settled in his spot, he would either ask to hold my hand or put his hand on my face. He had to hold some part of me the whole night. I have never seen him like this before.

I am watching him now fighting to make the pain go away. He keeps asking for me to sit by him.

This a new place for me right now. I am SO happy that we are home. It's nice to have my own bed, bathroom, tv and kitchen! I just wish I had a soda fountain and an ice machine. That would be Awesome!!!

The sound of silence...

We are home. It is wonderful.

For me, however, being home brings with it fear, anxiety, worry, silence, and more often than not tears.

I can hear people thinking, but Jenn your home! You are in your own space, no noise, no one bugging you ever 4 hours to take vitals or make a poop check.

All that is true. I feel the same way. I AM happy to have those things again. But those things are GONE!

I have sever Post Traumatic Stress Disorder. It is under control 90% of the time. The other 10% can be SO debilitating.

I am on alert 24/7.

It's the morning now. I fell asleep while typing this post. Haha.

The night was really hard. Zach woke up at least. 4 times in a lot of pain. He had thrown up a few times and I was SO worried. After giving back the meds I had just gave him, I called our neurosergon. He gave me reassurance that because he didn't have any other symptoms he was okay.

I did okay for the most part. There was the one part where I woke up to him having gotten out of his bed and was trying to join me in mine!

I asked what he was doing. He said, I dettin out a bed. Mom I need you. After getting him settled in his spot, he would either ask to hold my hand or put his hand on my face. He had to hold some part of me the whole night. I have never seen him like this before.

I am watching him now fighting to make the pain go away. He keeps asking for me to sit by him.

This a new place for me right now. I am SO happy that we are home. It's nice to have my own bed, bathroom, tv and kitchen! I just wish I had a soda fountain and an ice machine. That would be Awesome!!!

Home

As I type this discharge papers are being written.  I KNOW! Can you believe it...It has not even been a full 5 days. Things are moving forward so well they said that we could just do all his cares at home.

There isn't that much to do.. Just the normal changing diapers and dosing meds. I do that anyway so this is nothing new. Dang... I should SO be a nurse. probably not... thats okay though.

I am excited to be in my own space again. I am in awe with how this whole thing went.

There is that saying about taking that first scary step into the darkness with faith and then looking back and saying, that wasn't  so bad at all. Why did I do this along time ago. I feel that same way. In a blessing I recived I was told that I needed to have faith. All I needed to do was take that first step in to that scary dark room full of the unknown. Once I did that my Faith would make that room glow like it never has before.

Looking at my cute son laying in his hospital bed I see someone that has unwavering faith. He is the Lords gift to me. Now he is using that spirit of his to touch other peoples lives. He makes me want to be such a better person.

This isn't the end... We still have so many Chapters left to write. I would love to have you accompany us to the next Chapter.

I would love to know who you all are. There are many of you that have come to join in Zach's fight. Don't be afraid to send your love through the comments section. Your word of encouragement have helped me so much, Zach has felt them too!

Family....

Someones life changed just now... that sound... From my bed I can watch Helicopters take off and land at the U. I have the most beautiful view. I can watch families come and go. I get to watch families who are taking home their child for the very first time. I watch tearful families leave holding one another as they go back to their homes, leaving their loved one here. I have watched my own family walk back to their cars and felt the tears stream down my cheeks. Wishing they would just stay ten more minutes.

As much as I love this wonderful hospital and despite the fact that I owe my son's life to them, most times it is SO lonely here. Now I know there are families here that have it way worse than me, who don't get to take their kids home and some just never leave. I am a person that deals with depression, anxiety, PTSD, and OCD. Yeah all of those things. All at the same time. Being here has triggered those things to come rushing back.

I do know when my limit is and I can tell when I am falling into the pit of dispare. I have truly  been blessed to know the difference in reality and crazy brain. I have a pattern, be strong, be strong, be strong, lose it all for an hour, be strong, be strong, be strong. This is how I have dealt with the hundreds of hospital stays, lifeflights, and ambulance rides. Often after I have my melt down I apologize to whom ever is there to witness it and I move on.

Today was one of those almost have a days. I say almost because every time would get close a nurse would walk in to do something to Zach. It was most annoying. We have a great night and morning. Zach slept well and the nurses were super loud. It was AWESOME!  Dr. Kestel came in to check out Zach and visit with us for a bit. He looked at the drain in Zach's head and decided to clamp it (turn it off making Zach's body do all the work) for the day. He said that he tolerated it well, they would do a CT scan in the morning and then most likely take it out. We cheered. Zach did well. Because they had turned it off we were told that we could go for a walk or get out of bed!! Zach wanted something else! "Mom get in it." So I did, I was able to hold and rock and just love on my little man for well over 2 hours. He was the most relaxed and comfortable I have seen him this whole stay. It was heaven, pure heaven! He held my hand and would squeeze it to make sure I was still there.


While we were resting our Physical Therapist came in to observe Zach. I got out of his bed and she played with him for about 5 min. He successfully kicked her hands with both feet, raised both hands to the sky, gave awesome high-5's, and got from laying to sitting and from the middle of the bed to the edge all on his own!

It was fun to watch. About 3 min in he was so done. He was shaking and asking to lay down. I told her that he needed to be done, she agreed, and left. I got him layed down and he immediately pulled the blanket over his head. I talked to him for a min and told him to go to sleep. I went over to my bed and started to read. He was so fidgety. He was complaining and groaning. He could not relax. I kept reassuring him that it was okay. Twenty min later I started to really worry, I asked him what was hurting. I started to get up and ask the nurse Kyle for some pain meds. As I sat up, Zach said my head. I watched as his little head appeared over the bed rail. His face was RED, he looked like we was in so much pain. I watched as 3 little lines of fluid flowed down his face. 

I FREAKED out told him to lay down. I opened the door and yelled for Kyle. It was apparent that the drain had been pulled out, but was still attached to his head by the suchers that were sewn into his head. He called for the charge nurse and she came in. They were putting gauze on his head to absorb the spinal fluid that was coming out of his head in large amounts. The resident was paged, he was at dinner with a girl, and had to come back to the hospital. When he got to our room he called for a soocher kit and some lidacane. Zach was hurting so much and was so red and just Hot to the touch. He jabbed the needle with the lidacane in it, into Zach's head to numb it. My heart was breaking into a million pieces. He only waited about 30 seconds when he started stitching the hole closed. It was then I started to cry. I couldn't watch anymore. I just held Zach's hand and head and sang to him.

The resident left the room with the nurse. They got to the nurses desk and I hear him say "Did the mother yank that tubing out of his head?" "The boy should not have be able to pull on it, the mom would have been the only one." At this point I was so depressed. I was thinking if I would not have been feeling sorry for myself this never would have happened. I should have been sitting with him, not in my bed reading. This could have been avoided. Not reality statements. Kyle our nurse came back in to check on Zach. He reassured me that it wasn't my fault and reminded me that what we just went through was happening tomorrow anyway. We just got done a day early.

I felt like I needed to explain to Kyle about the CT scan incident. There is NO WAY that I would have pulled that out. Zach hadn't even touched or tried to pull it out one time. I questioned whether the situation that happened after the CT scan could have cause the drain to be pulled out. Kyle looked at me and said he wasn't aware of such incident.

The nurse that caused the problem didn't document it in Zach's chart.

That news made me more upset. Zach is doing okay now. They say tomorrow we will be getting another CT scan to make sure his body is doing what its suppose to with the fluid that is in his head. If things look good he said that it would then be up to me do say when we are ready to go home. Although that might change seeing as though we were just told that Zach has C-diff. UGG!!!

I was trying to find my happy place. When in walked EMILY!!!!


All of a sudden my the hole that was in my heart was filled. My Lovey was back with me and I felt whole again. She is so much fun and had a hard time with seeing Zach. She hugged and hugged me. It was wonderful!

She is currently staying with her Daddy. He was nice enough to bring her for a visit, along with all the rest of his family. Then my mom came in. I just wanted our room to be quiet. That meant that Emily had to go...*sad face* She was happy because I could tell she was overwhelmed.

My mom visited with me and told me my sister and her 2 cute cute kids Saige and Kade were coming. They were going to bring me Rice Chex and milk! Thanks Meesa.

After they left I hung out with Zach holding his hand and just staring at him. I am so glad that I am in a place where I can be at his side through all of this.

There was a Knock on the door. My "adopted" parents walked in. Zach woke up long enough to say hello but fell back to sleep peacefully.

You know there is that saying "The lord puts people in your path at exactly the right time you need them?" Well that was Mom and Dad B. We were talking about Zach and his situation and how close to Christ he is. They just listened and encouraged. They cried with me and laughed with Zach. Zach was put on this earth to touch so many people. He is such an amazing blessing to people, not just me and my family.

I know I was handpicked to be his mother. That is an honor but it comes with lots of pressure some days.

Through this I have had a chance to see how many people TRULY love and care for my sweet little family.


I couldn't ask for more, because I feel like I have it all.

Kisses...

When I found out that this surgery was really happening I was so worried Zach wouldn't recognize me.

Then I was told that it was happeneing SO fast AND that he would lose his speech altogether I was so devistated. People told me to start teaching him signs again, however, he would also lose the use of his right hand and arm. 90% of signs require the use of both hands. I know that I could have let him make up his own signs, he did that for a really long time. I have found it so difficult for him to communicate to others that are not around him all the time. Sitting with someone for a half hour just showing them what signs he did was so frustrating. Most of the time they would just give up and Zach would end up sitting in a corner doing his own thing.

I wanted to make sure that when Zach was coming out of the sedation I could do something special to let him know I was there. I talked about our song.. It has come in handy the last 4 days. When we sing that song, I sing the lines and he sings the last word of the line. It's fun to hear him sing it.

The other thing we started doing was kisses. We give kisses all the time. Zach leans towards your face.. Puckers his cute lips and says.. MWAH! This makes me smile even typing it. I wanted to do some more than just "regular kisses."

I got an idea one afternoon, Eskimo and Butterfly kisses!!

So for those of you who don't know what those are... a quick lesson..Ready GO!

Eskimo Kiss....
    An Eskimo Kiss is a kiss that does not involve the lips. In an Eskimo Kiss two people rub their noses together gently.

Now Butterfly kiss....
   A Butterfly Kissess that does not involve the lips. It is when two people put their eyes close to each other and flutter their eyelashes. Think blinking really fast while pressing your face to another person.

Thus started Zach's love for kisses. Zach is funny.. He will only do things like this with very spacific people. I get most of the fun stuff, but Grandmas comes in a seriously close second.

Wow, I went off on a tangent.. sorry bout that...

I started giving him these kisses all the time. After a while he started asking for them. His favorite is the Butterfly. He says " d-ive me buhh-fy tiss. Then he points to the eye he wants it on first. We do have to make sure that both eyes get equal attention.

The Eskimo kiss was funn too..well... that is until he learned that doing them in super warp speed is funny.

After a while we made it a game. I would ask him for a kiss. He would give me a regular kiss... then he will say.. dive me buhh-ify tiss. I would then have to ask him which eye. He would point and we would get kisses. He would giggle and say.. hahahah "dat hunny" (that's funny.) Then he would ask for a "e-himo tiss." Then I would say HEY i need a REAL kiss... He would crawl over and roll his eyes at me... "mmmmwha."

A few days before the surgery he started asking people for kisses. He would randomly ask for one. He normally didn't do that. If you were leaving and didn't give him a kiss he would scream, as he crawled in light speed, "Wait...WAIT...WAIT...i'n tommin..Look at me... D-ive me a tiss...WAIT. "

Surgery day came and as we waited for the guys to come take him back he leaned over and took my hand. As he nerviously looked at me, he said mom... D-ive me buhh-fy kiss. Then it was eskimo followed by a real kiss... at that point he looked at me and said I wuh-u you mom.

As I walked back to his room in the PICU, I was nervious. After watching him respond to commands and crying. I heard this little wispering voice said.. D-i-ve me buhh-fy tiss. He had not fully opened his eyes yet. I gave him what he asked for while tears ran down my cheeks. It was one of those moments that I will never forget. After that special moment I got to hear " I wuh you mom."

I said a prayer of thanks to my Heavenly Father.  None of this would have happened with out him. I cannot take credit for this in anyway.

As I sit here in this quiet room, listening to Zach quietly talk and laugh in his sleep, I am reminded why I am here. I was given a job that I promised I would do to the absolute best of my ability. It is a job I cannot in any way give up on or give to someone else. I am the mother to 2 amazingly awesome children of God. He knew that I was strong enough to go through all that we are.

I have to remember that Zach is not the only thing in my life that is causing me stress and worry. I have a sweet and seriously beautiful daughter who needs attention that I can't give her. She is my lovey. She brings me joy and is the cause of a lot of frusterated and worried tears.

I wish I had 2 of me. One to love on Emily.. Hug and sing with her. One that could explain that when mommy leaves I will always come back. One that is so in love with her that she would do any and everything for. She makes me giggle and teaches me lessons I didn't know I needed to learn.

Sometimes is hard to understand why the Lord thinks that I am strong enough to be here... going down this pathway. The answer I remind myself of... I CAN'T be strong enough. I CAN'T do it all. If I could then I wouldn't need my Savior. I would have to rely on his love and strength. He has carried my little family for quite awhile. Only putting us down long enough to learn the lessons we need and to have the Faith to ask him for help again.

I would do this over again...this is how I have become Jenn.

Therapy Day 3 post surgery.

This morning was a good morning. After finding the right drug to help with his pain, we both got lots of sleep. Our nurses were great! It's not every day you get a good nurse that is a ninja.

She was so quiet that I didn't even know that she was in the room. She said that Zach didn't know either. She is now known as Nurse Ninja! I slept great. It was nice to finally have some rest.

After our breakfast and some TV. Zach and I made signs for his room. These signs will help the nurses and visitors know how they can help Zach. We posted them on the wall and the door. Hopefully they will work.

We got some cool visitors. First off our wonderful Neurologist Dr. Lloyd happened to be helping one of his patients and noticed our name on the door. He was surprised to see us. He thought we were in for more testing for our surgery. As he was saying surgery Zach turned his head and he saw his incision and said Wow you already had the surgery. Yeah... We talked for a few and we made an appt for a follow up for a few months down the road.

We finally got our therapy schedule set. YAY!

 
We will be seeing an OT 5 days a week 2 times a day. She will be helping us regain the use of our right side. Now, we don't know right now if the use will even come back but he is showing positive signs that it is. He started opening and closeing his right hand. The OT was so excited. She mentioned that OT would very possibly keep us in the hospital long than we expect to be.

Next we see...



I got really good news from our new Speech Therapist today! She spent some time with him while i was showering. She said that from their records and from the answers to the questions I gave her, she said that she thinks that he might have GAINED some speech!!! I was shocked. He has been pronouncing words better. It was such good NEWS!!!


He will also do Physical Therapy. We are not sure how much he will be doing because he currently can't sit up.

Aunt Aimee came up tonight to visit. She brought mom pumkin chocolate chip cookies and ate the all...

I forgot to thank Alesha and Jenny for coming up last night. They helped me so much. I needed to laugh after such a stressful situation.

They turned the pressure up on Zach's drain today. The higher the pressure the more work Zach's body has to do to absorb the fluid that is created. It's sort of like having hydrocephalus.

We are currently waiting for dinner. Zach has requested Hamwach (sandwich) again. I will be having... something. Maybe.

Our first real scare.

On my.. I am so tired. This has been one of the longest days ever. Zach did well in the morning. He was talking and playing, I even had him laughing. It was fun to see his personality shine through.

I had a tough morning. I hit my wall about 9am. I was not in a happy place.

By noon we had graduated to the Neuro Truama Unit. In Jenn terms we got moved out of the PICU into our own room with a door and our own bathroom!!! Yes, it's that big of a deal!!

Zach had been acting off all day. He had been telling me that his face and head was itchy. That worried me because at one point he had decided that he needed to try and pull out the drain from his head. Yeah that didn't go over to well.

They decided to change pain meds, from Morphine to Loratab. They thought that the morphine was causing him to itch all over. They gave him Zantac for his empty stomach and the Loratab for the pain. He settled down and ate some food! He was so happy about getting food. He looked at me and said.. Mmmm good. It was awesome. We had some visitors (Aunt Kristen, William, James, Daddy, Lisa and Ari.) After the first set left he was so agitated. I was worried about him. He had not slept at all today. Then when the next set came by, he was doing really well. He was trying to sleep. Then he started getting uncomfortable again. By this time all of the visitors had left and he was not doing well.

This is when things started going down hill. Our awesome Nurse Kyle gave Zach another dose of Loratab. We waited for a bit for it to kick in and Kyle left for home. Monica started her shift and I told her that I was worried about how he looked. He had a really red blochy face and he was so hot. He kept saying owe mommy. After talking to Monica again she noticed that the redness on his cheeks was spreading. I noticed that his face and scar where starting to swell really bad. Monica rad and got the main charge nurse and they came and watched Zach for a bit. He was so sad and uncomfortable. At this point I knew something was majorly wrong and if we didn't figure it out I would lose my little boy. It was spreading SO fast. I watched his face change and swell.

He blew one of the IV's. It was located in his elbow pit. It was so red that I was so worried about it hurting him. They removed that IV and we went forward. They changed his fluids to the last IV he had. It was in his foot. He screamed so loudly when they started it flowing. I was feeling so sick at this point.

Thats when I asked for prayers. I was loving him and quietly talking to him. There was nothing I could do. I pleaded to my Heavenly Father to hold Zach until we could figure out what was going on. Once again the lord came through. I was promted to look at his foot. It was so swollen that it was almost triple the size. I rand and got Monica. She quickly took out that IV too.

The Neurosurgeon called and said give him Benydrl asap. They put the dose in and with in a few min I could tell that things were getting better.  He was not crying and complaining as much. And about 20min later he was finally asleep.

They took him off of the pain meds to get them out of his system. They started oxcycodone about an hour ago. He us snoring up a storm. He has been in such a sad place today. He didn't have anyway to fix it... Neither did mommy.

Well my friends. I am finally headed to bed. It's chair fold out bed but it works for me!!!

My wall

This says it all. Typically when we are in the hospital this is the point where we are headed home with a happy cheerie Zach. This morning over breakfast I hit my wall.

This is when I get depressed and just want to cry the day away. I know that's not a reality, and it wouldn't do me much good.

Zach had a bad day last night, so I get to have mine today... Its only fair!

Doris Day- A bushel and a peck

Let me tell you a little bit about Zach. Zach is a super amazing 5 year old that is..well, awesome. He LOVES music of all kinds. He has such an ear for it. He has been dancing here in the hospital to Mom's Ipod.

Zach has one song that Mom sings to him that helps when he is feeling overwhelmed and frustrated.

The song is above. We only the first part but the whole song is cute!

Zach knows the words to this song and will sing it with me. This is the song I sang yesterday when we had the CT incident. Calmed him right down.

Enjoy~

Triggers

It is just after 2:20am. Why am I up? Hmm lots of reasons. 2 of my best answers? The fact that I am currently "sleeping" in a rocker and the other triggers.

Many people have different triggers. You hear a song and you flash back to when you were 16 hangin out with your best friend. A smell, the taste of a specific food, they all can take you back to those places and your not quite sure of how you got there.

My triggers don't take me back to good places these days. I was "laying" (that word just made me laugh out loud) here trying to get some sort of sleep I was startled out by a noise. The very loud rhythmic humming of lifeflight.

Immediately I was whisked back to horrible times. My heart started beating fast my leg started to bounce and I honestly could not breathe. (Ok I was seriously ready to start my own blow by.)

Then the flashes came. Watching my sons life hang on by a very small thread, while doctors and nurses keep that thread attached. Then hearing those words "we need to get him to primary's, we have called lifeflight." I have the same stupid reaction every time. Then that sound comes. The sound that means I have to hand my son over to a stranger and I can't go with him. I can't protect him. I can't talk to him explaining what is about what is going to happen and how its going to be okay.

Then we walk outside. My hands shake and I start to cry. Forcing my self to stay put and not run and try to take him back. I give him one last kiss, and walk away. I stand there watching, watching them take off with my boy. Praying out loud please Heavenly Father hold him for me until I can get there. Then I cry harder. It's the same every time I hear that sound. Please Father, hold the person who's life is changing at that very second, until their loved ones get there.

As I hear the commotion out in the hall I open my eyes to see doctors scrambling, and the lifeflight crew whisking a hurt child down my hall way. That persons family just had the most horrific change in their life. I walk down the hall to take care of the gallons of water I drank last night. I am walking back to my room when the parents walk to their childs new home.

Oh how I just wanted to just hug them and welcome them into a club none of us wanted to be apart of. I wanted to explain how it gets better everyday even if your child doesn't. I wanted them to know that it's okay to have bad days! We are human after all.

In june of this year we almost lost my father to a motorcycle accident. He was lucky to be alive. I was reminded how lucky I am. I have tried to overcome some feelings I had towards him. Watching him fight for his life proving that he is as much of a fighter as we all thought he was humbled me. None of the other mattered anymore. I just wanted my Dad to come back to us. My family's lives started down a new road at that moment. We came together and linked our hearts with his and said "we are with you to the end Dad.

Again I watched as my family, including my amazing father and mother, linked hearts and said to me, Jenn we are here for you and Zach at whatever the cost. Then at that moment I could feel my faith getting stronger. As people fasted, prayed, and sent good healing vibes our way, I felt like I could move a mountain. I would help Zach fight for his life when he couldn't.

I hope those parents down the hall feel the same way. I have a sneaking suspicion they do, but please help me by praying for all the amazing kids in this hospital and their tired, worn out, but still having faith and hope parents.

It's okay to have a bad day...

It's tough being a mom. Today was one of those days when it was hard to be the mom that couldn't help their child. I hate being in a place where there is nothing I can do. I never expected for him to be pain free. Not in the least!!

Zach's morning was awesome. Then by the afternoon things changed. He just could not get comfortable. He had a situation while getting a CT scan (which turned out great!) that set the tone for the rest of the day.

The nurses that were moving him back to his bed didn't look and make sure that his head was supported and as they lifted him he hit his head quite hard on the head sheild. OUCH!

This sent him in to a crying situation that he could not control. As they tried to move him again the nurse kneeled on the drain tube that is stitched into his head. It drains he extra fluid that builds up. To much fluid causes the pressure to build and creates one heck of a headache. As i watched helplessly, and listened to him cry like I have never heard him cry before, I noticed the fluid literally shooting out of the tube. The nurse caught it and was able to pinch it so it was not flowing anymore.

We had a nurse come and reattach and stitch it back into place. I was fighting for a place to touch him and let him know i was around. He was not happy, with good reason, and I just wanted to punch the nurse in the face... FYI I am SO not a violent person, however, I can be VERY vocal and I will fight for my children.

They finally got him back up to his room and I was trying to figure out something that I could do to help calm him down.I had sung "his" song about 100 times and it just wasn't cutting it. Then it hit me.. CALL GRANDMA! I picked up my cell and we called "andma." He talked to her for a few minutes and after we hung up he calmed right down. YAY! He just LOVES his grandma.

Grandma got here a little while later and watched him while I took a nap. We got to start clear liquids today too! He drank really well and got a slushy. As we were watching him he just seemed uncomfortable. Then WAM throw up EVERYWHERE! EWW... Poor grandma was in the line of fire. There wasn't a nurse in sight so I just yelled.. WE NEED HELP IN HERE!!!

A doctor came running and helped us clean him off. After that episode they gave him Zofran to help with his upset tummy. They also put his Morphine on a regular routine... HELLO why wasn't it that way before?? GERRR!

By 9pm tonight he was so uncomfortable nothing seemed to be working. I noticed that his drain wasn't doing its job. How could he relaxed when the pressure in his head was building at an alarming rate? Again I went to find help and no one was to be seen. They were doing a procedure on a little boy across the way and the boy was screaming so loud that it was making all of us anxious. *sigh* I waited for 10 min before someone came back to our pod. I talked to the Doctor and she said "Okay i will come check on him", then, we never saw her again. Zach was crying so hard that I was ready to start yelling for someone to help or start walking into rooms and asking for someone to care about my son.

Thankfully my nurse came back and was able to help me adjust him. I made sure she checked his drain. Currently he is peacfully sleeping and looks like this...


Cause that's how he rolls dontcha know!?!?!?
I love him!

Special visitors and update

This morning was such a great morning.

I woke up from the 7 HOURS of sleep and walked into Zachs room... I was greated with a bright eyed boy who proceeded to say "Hi Mom." After the tears stopped I gave him a eskimo kiss and he helped. This little boy is so amazing... I put my stuff down and walked over to his face and heard him wisper... "I wuv you mommy." These were the words i was waiting to hear.

I am so proud of my little man. He is overcoming odds that I never knew were there. Currently he is talking to grandma eating a slushy. Yes, they are giving him clear liquids...YAY!!! I that is HUGE!

We also had such a fun visit today! The Utah Jazz stopped by the hosital today to visit the kids. We got 2 of them visiting in the PICU. Tyrone Corbin (right) and #44 Kyrylo Fesenko came by and gave Zach a signed Basketball and a Jazz year book! I was so happy they brought the ball, because grandma used it to make him LAUGH!

They were so nice and made sure all of the kids were entertained and got a gift!

Zach does have his moments where he is in a lot of pain and cries. He is such a trooper. His best friend, aside from mom and grandma, is MORPHINE. Within seconds of getting his dose his is comfortable and sleeping.

I am so happy with the progress! I do know that Zachy is going to have some pretty bad days, but i say, BRING IT ON!

I am so happy

Day 1

Yeah, it's kind of a scary picture.

You're looking at a miracle! My Zach has defied the odds!!

The surgery went really well. He did amazingly well. The doctors are so surprised how well he did throughout the whole thing!

The surgery lasted 9 hours.

They brought him into the ICU to recover and come out of the sedatives.

At about 5:15pm I was able to see him. He looked so good. Not nearly as bad as I thought he would.

They were trying to keep his blood pressure stable, so they asked us to let him sleep. However, mom needed to know if her little man was still in there somewhere.

He responded to Grandma Miller first. (Like always) Then he tried to open his eyes!! Visitors came (Aunt Aimee, Uncles Scott and Brandon, adopted Aunt Lisa, Daddy and Grandma Kohl and last but not least Daddy's Bishop.) And checked on me. During those visits, miracles happened!

It started with the response to G. Miller and mommy, then he started responding to requests like "lift your arms to the sky" or "kick your feet". He DID IT!! BOTH SIDES!! He was not suppose to be able to move at all!!

Then the good stuff happened! He did THE best shocked and happy face I have EVER seen! They took my breath away.

The best part? When asked what he needed he SPOKE loud and clear and said MOM! Well that was the end of that! Mom was a blubbering mess.
I am amazed at his progress!! He is just doing so well!! He is such a strong fighter!

Our Heavenly Father does answer prayers. Having the Faith to walk into the Dark and scary room is hard, but that faith you have will illuminate even the darkest of rooms! You just have to take that first step!

Word of the day- FAITH and MIRACLE!

Hemispherectomy

I love this little man.
He just knows how to love and make his mom so happy.
I am so thankful that I get to be his mom.
This pictures starts the new book in our lives. He will make through this... We ALL will make it through this.


This is the amazing doctor that is doing the surgery. Dr. Kestle has been an amazing doctor and has helped make all of this possible. I heart him!


The anesthesiologist. He made us feel at ease. He promised that he would bring Zach back to me. I am grateful for such wonderful hospital Staff.

Keep praying for him, we need all the support we can get.

It's almost time

What a peaceful Sunday it has been. I can feel the love and prayers that have been sent on our behalf

We have been so blessed in the last few days. So many prayers answered and so many people looking after my little family.
I am currently laying in bed with my Emily watching Rudolph the red nosed reindeer. I am worried about her.

She has not been herself. I asked her yesterday what was bugging her. She is so worried that her brother is not going to be able to play and talk with her. She understands so much all that is going on. I wish there was a way for me to help her. I am not in a place where I can do that. That fact makes me so sad.

I can't believe that it's all really happening. It took forever to get here and now it seems like it's coming to fast.

I am so at peace with life currently. There are things that I am in need of, but I am so happy with things right now.

Thank You so much for what everyone has done. It was all needed.

Tomorrow is going to be a long day, lots of tests and things to get together.

I will keep everyone posted.

Lots of love!

Ready...

I just had to share this cute picture.

I have been doing a lot of focusing on him lately.

I have to say.. I am ready for the challenge!

BRING IT ON!

Finding the sun...

With the change that is on the horizon, I feel overwhelmed and frustrated. I am worried about Zach and what his abilities will be.

People have questioned my choice as his mother. I know that I have to prepare for the worst, but I don't think it is my time to hand Zach over to our Heavenly Father.

Creating a safe clean place for him to live is daunting. I am doing it though. Looking at my home gives me hope that maybe one day I will be able to keep things organized.

I just finished reading a book that gave me the reminder I needed to keep moving.

I do see these trials as blessings.

I was able to attend the Temple last friday. I had a really rough time. The adversary has been causing a lot of sadness these last few weeks. I love the things I learn while I am serving others at the temple. I know that my Heavenly Father hand picked these 2 miraculous spirits to be mine. I know that Zach will be wherever the Lord needs him.

Even though I am having a tough time remembering my worth,I do know, without a shadow of a doubt, that the Lord loves me and trusts me enough to raise E and Z. I have amazing family and friends. They have done more for me than they should, but I am eternally grateful for them.

I will be posting on Zach's surgery and recovery here. I am nervous for what the future holds but I know we will make it through. Trust in the lord with all thy heart, might, mind, and strength.

A special request...

Zachary is going to have major brain surgery (Hemispherectomy)
 on Dec. 14 2010. They are going to be removing the whole left side of his brain. 

Zach has a seizure disorder that comes from the left side of his brain. He has constant seizures going on 24/7. Without this surgery Zach's life will be cut short in less than 2 years. 

Please help me (his mom) in celebrating his life, by doing what ever you chose to do.
For those that want to...
We will be having a special fast on December 12th.
We are planning on ending the fast at 6pm with prayer. You may do this in your own homes.

Prayers would also be great on the 12th and on the 14th (the day of surgery).
Good thoughts.. good vibes... any way you chose I would love the support.

We love Zach so much. He is truly a miracle. I can't imagine my world without him in it.

As his family... We have chosen to just focus on the positive end result. We are not going to be discussing the details, because we feel that will deter us from remembering why we are doing this surgery.

Thanks for all your love and support. I am so grateful for the support circle we have in place.

Love,
Zachy's mom
Jennifer Kohl.

The closing of a book

I have had a few days to internalize the information I was given this weekend.

I seem to be really good at going through the stages of grief.

Right now I am mourning the loss of the little boy I have right now.

I do know that the decisions I have made in his life were the right ones.

It was not a easy choice to alter his body the way we are.

I do know that without this surgery he will only be with us for another year or two at the MOST!

Zach's mission on earth is not over.

My life is changing. Everything that I am comfortable with is leaving.

Everything that I know has to be change. It has to change TODAY!

I don't like that kind of change. I like to have time to work things out.

Change that comes in small pieces is great. Closing my "book" forever and starting over is scary.

I am still amazed by the trust the Lord has in me to take care of this miracle.

I have really started to wonder what I have done to be blessed with all of this. Why did he chose me?

I am ready (sort of) to take this on.

So for right now I will buy some sweet new pens and take this new book, write my name on the inside cover, and begin with Chapter 1.

The journey.

I am sitting here in the intensive care unit with my son.

I have a love hate relationship with this hospital.

This place has saved my child's life over 100 times.

I adore the staff and the time they have spent helping me keep Z alive.

However, I have been here to many times. This place should not feel like home to me.

I should not know the names of nurses or have them recognize me, Z, or anyone in my family.

I should feel panic when life flight flies over head.

I shouldn't burst into tears when an ambulance drives by.

Z should not be so full of scar tissue that it becomes impossible to get an IV.

Our normal should not be having a giant needle embedded into Z's bone.


This IS my normal.

I don't like it to much.

I am thankful for it though.

The view from our room isn't so bad either.