Zac's First Brain Surgey October 27, 2010

We were back at the hospital bright and early as Zac was the first to go to the OR that day. I did not get much sleep the night before, how could I knowing what was going to happen today. Dr. Cohen came in and told us everything he was going to that day. The plan was to go between the two hemispheres of Zac's brain to work on getting as much of the tumor out as he could. Then he would drain all the extra fluid that had built up in Zac's skull and place an external shunt to keep draining the extra fluid out of his head. We were told this would be a very long surgery 6-8 hours but to remember that the longer they are working on him the more tumor they are getting out.

It was go time. We walked the walk of terror as they pushed our baby boy to the OR doors. I kissed his head and sobbed my eyes out hoping that was not going to be the last time I saw him alive. We returned to Zac's room closed his door hugged each other and cried. After we pulled ourselves together all we could do was wait.

About 6 1/2 hours later we were told that Zac was out of surgery and stable. They had taken the breathing tube out in the recovery room to see if Zac was able to breath on his own, we were told he was breathing on his own and would be back to his room soon. Dr. Cohen met us in his room before Zac got there and he said that everything went well. He was able to get 30% of the tumor out and a biopsy would be done to determine what kind of tumor is was. Also there was so much fluid built up in Zac's skull that he had lost 3cm in head circumference after draining the fluid.

Zac came back to his room and it was a flood of PICU Dr.'s and nurses we were pushed to the side as they tried to keep Zac stable. A nurse was very concerned that Zac was having trouble breathing and she thought he needed to be intubated to support his air way. We were kicked out of his room while the team worked on Zac. We were more then scared at this point. Was he ok?? We didn't know.

After 30 long minutes we were brought back to Zac's room. They had to put his breathing tube back in. It was just way to much work for him to try and breath on his own after everything that had just happened to him. We were thankful to the nurse that noticed that Zac was having such trouble with his breathing. Now we had to get through the next 24-48 hours.

The Demon Deep Inside Zac's Brain

On October 26th after Zac went to MRI about 2 hours later we were given the devastating news that Zac had a very large brain tumor. We were also told the bad news news that his tumor was in the worst location of his brain, it was in his hypothalamus and wrapped around his optic nerves. From what we were told the hypothalamus is your "life line" it controls everything your body does from controlling your body tempture, heart rate, breathing, and hormones. This was not the news we were expecting to hear.

We were introduced to Dr. Cohen one of the best pediatric neurosurgeons in the country. He said he was going to do Zac's brain surgery that day, he was just waiting on an OR to open up. The day drug on and on it felt like we were in a really bad dream and not real life. As the afternoon turned into early evening with no OR coming open any time soon Dr. Cohen made the decision to hold off on Zac's surgery and do it first thing in the Morning of the 27th. He said that Zac was stable enough to make it overnight. We were told to go home and try to get some rest.

I am attaching a picture of Zac's brain tumor. This was the MRI scan done on the 26th. The large white mass in the center of his brain is the tumor. I have not shared these pictures with very many people. This just gives you an idea of what our son has been fighting for almost a year.

October 26, 2010 Our Nightmare Begins

On the morning of October 26th I had finally gotten some much needed sleep after not sleeping for two weeks straight. I turned on my cell phone and it had exploded with voice mails from the hospital wanting to talk to me right away. I got a sinking feeling in my stomach while I frantically tried to get a hold of the hospital. I kept getting transferred from person to person and panic set in. While on hold my call waiting beeped and I saw it was Dan calling me. I decided to hang up with the hospital and answer Dan's call. I knew if he was calling me it had to be important, he is not allowed to make personal calls at work. He asked me if I had spoken to anyone at the hospital, I said no I was trying to call them what is going on. He told me to stay calm, get myself ready to go, that my mom was on her way to watch Alexis and they had done a CT on Zac early in the morning and they had found a "large mass" behind his eyes. Dan also told me that Zac was being transferred to the PICU to be sedated and intubated and sent down for an emergency MRI and he might be having brain surgery that day. I hung up the phone then my knees hit the kitchen floor so hard that I thought my knee caps had broken.

I couldn't break down like I wanted to. I had Alexis to be strong for, I didn't want her to see mommy cry. I quickly got ready and waited for everyone to get to the house so Dan and I could head to Cleveland. As we drove to Cleveland it was silent in the car, an erie silence. I think we were both in too much shock to talk. I remember holding Dan's hand the whole ride I didn't want to let go he was keeping me strong. We arrived to the hospital and made our way to the PICU room #15 and when I walked in my world came crashing down.

I remember looking at my little baby laying in that crib with tubes down his throat and his eyes were half open and had a glassy look to them. I wanted so badly to scoop him up hold him and kiss him and tell him everything was going to be ok. But I couldn't all I could do was hold his hand and sob my eyes out. About an hour later Zac was taken down to MRI as we waited to hear the news. This was the news that any parent is never prepared to hear.

October 25, 2010 Mommy Fights To Save Her Baby

On October 25, 2010 our day started out like any other day. No sleep from Zac crying all night long, trying my best to be alert for Alexis and working on house work. Around 1:00pm I gave Zac a 6oz bottle because he was screaming so I figured he was hungry. He took down all 6oz with no problems. I was trying to get him to burp when all of a sudden all 6oz of formula came flying back up all over me, Zac, and my couch. I snapped!! I remember throwing the bottle across the living room while crying my eyes out and yelling to God "What is wrorg with my baby!!" I got on the phone and called his pediatricians office and told them I would be bringing Zac in around 3:00 that something was really wrong with him.

Dan got home and I remember passing him in the door way as I walked out with Zac. I was on a mission to save my boy. There was a long wait at the Dr. office and all Zac was doing crying. The lady behind the desk asked me if I needed to feed him my reply was "No he needs to be in a hospital" Finally it was our turn to be seen. I told his Dr. everything that had been going on for the month. He checked Zac over and didn't have much to say. I told him he had two choices 1. Admit Zac to Rainbow today or 2. I would find a way to get my son admitted to Rainbow. My last words to him were "My son is dying please help him" The Dr. walked out of the room and came back a few minutes later and I was told that Zac is a direct admit to Rainbow and to go now. I thanked him and the Dr. left the room. I sat there for a bit holding Zac as tears ran down my face. A nurse came into the room and asked me if I was ok I said no. She asked me if I believed in prayer, I said yes. The nurse stood over Zac and I and prayed for his healing, I sobbed as I held my baby. She then asked me if I had eaten that day, I said no. Sh walked out of the room and came back with $20.00 she said to please get some food and put some gas in my car. I hugged her and cried the left the office. In the parking lot there was a mother that asked me if I was ok, I said I'm on my way to Cleveland to try and save my babies life. She wanted to do something for me but she didn't know what to do so she prayed for us.

I got home and packed a bag for Zac. I remember Dan kissing him good bye and he cried as we walked out the door. The drive to Cleveland was long, quiet, and scary. Being alone for that long with all my thoughts running through my head was bad thing. Around 7:00pm I got to Rainbow Babies ER in Cleveland we were a direct admit so we were taken right into a room in the ER. There were Dr's asking me all kinds of questions and were doing exams on him. After about 2 hours in the ER we were taken to the 6th floor to a room for Zac to stay in for the night. I met two Dr's that did a full exam on Zac and I told them everything that had been going on for the month of October. I wasn't given a plan for the night was told that labs were going to be drawn and he was going to be watched over night. Around 10:30pm I decided to leave for the night. I felt bad leaving Zac but I had to go home because Dan had to work in the morning and I had to be home to watch Alexis. I remember going home turning off my phone and falling asleep for the first time in two weeks. The next morning I would wake up to my worst nightmare!!

October The Month From Hell!! 5 Months Old

On October 4, 2010 I took Zac to the Dr. because I noticed his head control was getting worse, his eyes were "twitching", and he was no longer rolling over from tummy to back. His "reflux" was worse than ever and was becoming more and more fussy every day that passed. I was told that Zac could possibly have CP and that I needed to get him to a GI Dr. right away to get an upper GI done because of the "reflux" getting worse. I went home and got the upper GI scheduled for that Saturday at 9:00am.

On October 8th I just had a feeling something was really wrong with Zac I had noticed that his eyes were rolling and shaking around so I called the Dr. office and was told that if I am so worried about Zac to take him to Rainbow Babies ER in Cleveland. I was able to get my mom to watch Alexis and had Dan meet me in Cleveland when he got off work. I sat in the ER waiting room for almost 4 hours before finally being seen by a Dr. I was trying to explain to the Dr. everything that was going on with Zac but everything that Dan and I were trying to tell her were falling on deaf ears. We told her to please look at how Zac's eyes were "twitching" around and she said "Well hes still tracking objects so he can see" At one point Dan asked if this could possibly be a brain tumor and could we get a CT scan. The ER Dr. felt his soft spot and said "well I can't feel a brain tumor so that's not it". Again we were told there is no way that we could be seen by a neurologist on a Friday. We were told to switch his formula again and up his reflux meds and we were sent home.

I took Zac to get his upper GI done that Saturday and got the results a few days later. Zac did not have reflux the upper GI came back normal. By this point we were at a loss as of what to do. We just took everything day by day. Zac would have episodes of screaming and crying for almost an hour at a time. We would try to feed him and he would gag and puke up 6oz bottles all at once. At times all he would do is sleep sometimes almost 20 hours straight sometimes only 10 minutes at a time. I was a zombie at at my whits end. I was not sleeping because I was up for hours at a time with Zac trying to keep him quiet so Dan and Alexis could sleep.

One Saturday morning around 3am Zac was screaming at the top of his lungs and had everyone in the house awake so I decided to take him to our local ER for some help. I told the ER Dr. everything that was going on so he decided to do some blood work and a chest xray to rule out phenomena. Everything came back normal. They had sent down the on call pediatric specialist to check out Zac too. She also noticed his twitching eyes and again I asked to get a CT scan and was told that they were not able to do a CT scan on baby his age at that hospital. She said the vomiting and fussiness was most likely his "reflux" acting up and was told to put lots of cereal in his formula to help with the spitting up. Again we were sent home with no answers.

Sepetmber 5, 2010 4 Months Old

September was a fun busy month for us. We took our first family trip to Pennsylvania to visit some family and to just get away for a weekend. Before we left I had noticed that Zac's "reflux" had gotten a bit worse so I took him to the Dr. before leaving and he was taken off his Zantac and put on Prevacid and also was put on a special formula for babies with colic. Zac had been getting a bit fussy more often and was spitting up a lot more. I was told the new med and formula would fix everything. If only that was the truth!!

August 5, 2010 3 Months Old

On August 5th mommy turned 32 and Zac was now 3 months old and amazing us more and more every day. He was rolling over from tummy to back and holding his head up like a champ while pushing up on his hands. We had a feeling Zac was going to be doing everything early, we were so proud of his progress so far. Zac was a very happy go lucky baby that didn't cry much, ate like a champ, and was a pretty good sleeper. But over the next few months all of those things started to change.