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!

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!

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