Blogging from my phone is getting frustrating. That's the reason you haven't heard from me.

Things at our house are going well!!

Zach and Emily were both diagnosed RSV and Croup. It's been a fun few weeks for our family.

They are both at the tail end of the sickness, thank goodness.

I am so ready to be healthy and get our little family back into our normal.

Zach is doing so well. Now that his sickness is almost gone, he has become so mobile again.

He is crawling and scooting! He has climbed the stairs!!

He talks circles around me! It's AWESOME!! I am happy! We will hopefull start school again for him. I am excited to finally get him in the routine again!!

Emily is off track again, her teacher said that she is doing amazing academically. She is in the top 1% of her class. She is reading on an almost 2nd grade level! I am so proud of her. The only thing her teacher is worried about is her social skills. She says she is often "distant." Considering the things that have happened in her life, esp recently, I am not surprised! We are working on that though!

She is doing well. I have put into place some new disapline and structure. It seems to be working well!

Things are finally moving forward. I hope to start school soon too. I am changing my major. I am not quite sure exactly what it will be yet, but I have a pretty good idea!

Stages of greif

Over the last few days I have gotten the feeling that people got the feeling that I expected Zach to be the same old Zach. That he would be doing everything he was before.

That is far from the truth. I hear people tell me at least he is alive, talking, home or remember he just had surgery.

While all that is VERY true and I feel so blessed to have those things, there is more to it.

From the very beginning of Z's life I have always prepared myself for the very worst possible outcome.

I still HAVE to do that. It's not something that I can just skip and move forward.

In this case, I prepared to watch my son die. I know that sounds horrible, but there was a reason for it. I have to go through the emotions and feelings so that if it did happen I wouldn't be blindsided. There has been many times when I have not been prepared and was hit with so much grief and heartache I was not able to function.

It also helps me celebrate the little things my children do. We cheer and clap as they poop or burp or sit up. It allows me to take a step back and really be able to see the hand of the Lord in our lives.

I also go through the stages of grief all the time. When Z was born we grieved the child, pregnancy, and normalcy that should have happened. This weekend I grieved the little boy who was taken away.

Everything I have ever known in my 33 years of life has gone out the window. The way we did things in my home has to change. EVERYTHING. This doesn't just affect me and Zach, but it affects Emily more.

She is struggling. She has been tossed from house to house, no routine. Everything about her home has changed. Where she sleeps, plays, eats, and watches tv. Then there is the fact that everytime zach had a seizure she didn't know if he would come home alive.

She was so scared for this surgery to happen. She was scared her brother wouldn't be the brother that she has known. Thankfully he is, but she is still struggling. She has been very sweet and helpful with him. She loves her brother so much!

I have been grieving for my daughter and the chaos she lives in. I am thankful and so blessed to have the outcome we have received.

Give me a day or so to grieve and I will be back to my happy self.

I wouldn't nor have i ever let this grief get in the way of taking care of my children. EVER! They will always come first. If you know me well enough, you know that's true.

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...

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.

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.

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!

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.