Still Waiting....

October 30, 2010

He is teaching us patience, all of us....

Well, here I sit....again at 3:00 am on Saturday morning. My apologizes again for the time span in between the entries. There is little change in Cory but I needed to update you on what has been happening.

The doctors have stopped his sedation and all pain meds. Cory is slowly, slowly waking up. We have removed all catheters and now we have two IV's and a PIC line. A PIC line is like a catheter but it is inserted into the arm around the elbow. It runs up the arm around his shoulder and into the chest. They inserted this type of entry because it was easier access than the catheter in his groin. He had to be sedated for this procedure so that set us back several hours on his waking up. But always keep in mind this is Cory and he is leading the show. You will think one thing but he shows you another. We are still playing the waiting game but like I said, he is making small, small baby steps to some improvement. I am very guarded now on the enthusiasm I feel about these steps he is making. Don't get me wrong, I very extremely overjoyed and would like to do cartwheels and yell from the highest rooftop but I am just too scared. Throughout this journey, Cory has made improvements only to have a setback. It was devastating to hear these reports from the doctors...it was literally a cold hand of fear reaching into my chest and squeezing my heart and it felt like I could not breath.You sit there and your world starts to spin and you just want to get off but where do you go? It happened twice these past ten days and if it happened again, I don't know if I could bear it. I just keep the faith that all of our prayers are being heard by the Lord above and He will give us what we have been asking for...

Butterflies....

Thank you all for sending the butterfly cards! The morning after I posted about Jennifer's comment on my blog, we received a huge stack of butterfly cards! It felt so good to see all the butterflies come in. When I was looking around Cory's room to see where I could put them, I really stopped and looked for the first time at the cards he has already received. Out of roughly 25 cards we had received, 20 were butterflies....God had been here all along bringing prayers to Cory for his healing...what a wonderful feeling! Thank you again for taking time out of your day to send my little boy these cards of faith....

Overwhelmed....

I want to thank everyone who has sent texts, messages, emails, Facebook messages or called or sent gifts to us. It is very overwhelming and humbling to receive all the prayers, love and tremendous support you are sending us from El Campo. I want to apologize for not returning your messages or calls but I want to let you know I appreciate you taking time out of your lives to think about us and saying a prayer for Cory. Sometimes it takes a crisis to realize just how lucky and blessed we are to live in a small town.

I also want to thank you to all the people who see or has seen Cory on a daily basis...his teachers, aides, secretaries and principals at First Presbyterian, Myatt, Hutchins and St. Philip CCE Class. I received an email from a friend, Sheryl Thonsgaard, the other day and she reminded me there are others going through the same pain we are going through as well. In our fast pace lives, I forget about all the people Cory comes in contact with during his day and how he spreads his love and joy there as well. Thank you for loving my sweet boy...your pain is my pain as well. I am fighting so hard to heal him and bring him home to you as well...don't give up on him, he is a fighter and I know in my heart, he will be healed and returned to us so he can continue to share his gifts God gave him at birth...he will be a testimony to God's love...I feel that in my heart and soul.

I would like to ask one thing...please include all the children here at Texas Children's Hospital in your prayers. There are children here that are sicker than our Cory and I know if all of our pray warriors pray for these children, more miracles will be seen here...

So I will close this entry tonight and yes, it is now 4:30 in the morning....it is quiet and peaceful now...with the only sound heard is my tapping of the keys on my laptop, the snores of tired parents and the occasional whap-whap-whap of a helicopter bringing another child here for a miracle...

Waiting on Cory...

Today, October 27, 2010, my son Cory is a week old. I almost lost him last week but God gave me the pleasure of watching him be born again....Happy One Week Birthday my darling boy....

I really don't have any solid new information about Cory. We have lots of could be, possibly this or possibly that...the only thing that is solid is we are waiting on Cory to tell us what he has to say. I know what I want him to say...."Hey Mommy..." that would be the sweetest sound. I told Cheyenne today, I would even love to hear the two of them fighting like crazy....and Chey said she would love to fight with him too.

It was hard today...I stumbled in my faith of God and of Cory. I was letting all the bad thoughts in and just couldn't keep the sadness out. We left the hospital this evening to go to McDonald's house to shower and change. I stay at the hospital at night now. I guess coincidence or not, every time I leave, Cory always takes a turn and I can't handle anymore bad news. I so desperately want to hear something good we can celebrate.

I was talking to a good friend, Jennifer, and I was telling her my fears and my joys. I told her Cory has been through so much this past week, he has had a brain bleed, low clotting function, 330K white cancer cells, blood pressure issues, brain pressure issues and now the stroke. It seems like he is continually getting hit with something else as soon as he is over one. Jennifer reassured me that Cory is strong and determined and he will be okay.

We ended our conversation and I proceeded to get in the shower. While washing my face, I heard this voice saying " He is strong but you have to be stronger...the devil is trying to get to you by making you have doubts about what God can do....the devil is also after your son....he is pure of heart and his mission on Earth is not done. Renew your faith in God that He will return Cory...you just have to go and fight."

Now, you can believe what you want but this is what I believe....that from birth, Cory has just been a different child, he has an old soul...when he was born, he was the spitting image of his great-grandfather, Jessie Gail Morton. Big Pawpaw, as Chey called him, was the most caring person I know. He had a love for his wife, Lena and his family. He loved a good joke or gag and was a hard worker. Some of the last memories I have of him was bearly being able to walk but he climbed the ladder on a combine and cut some rice. Cory was the same...Codi Klatt came to our house a few weeks back with her mom, Amy. Amy and I were doing some craft stuff and Cory just looked after Codi. Codi would get into stuff as most one year olds do and there was Cory, making sure she didn't hurt herself. Everything she touched that was unsafe, Cory would put it in our closet. No one asked Cory to watch over her, he just did. I don't know too many 8 year old boys who would do that....

After I heard the voice, I closed my eyes and with my heart, I apologized to God and Cory for being so weak and not having faith in them. I have tried to keep my faith that Cory would heal from this disease and its effects. This afternoon, I stumbled and lost faith. I told God I would fight for my son and whatever happened, I would always be there for Cory, he wasn't going to lose me! I said devil, it's on! You have tried to take my son six separate times and he has fought you off, now, you are going to deal with me...I felt determination that I can't explain. I picked up my prayer book Father Gary gave me and we came back to the hospital.

We were in a race, a race with darkness closing in to take my son. I had to be with Cory. I went into his room, held his hand and leaned over real close. I told my son I'm sorry I lost faith in him. I know he is meant for something more, God has plans for him and said prayers over his body. I have been hearing about what Cory is doing. He is getting people to stop and look at their lives, making choices about what is important and what's not. I am looking at my own life. I have had some outside issues I have had to deal with this week. Issues that are beyond my control but they still get under my skin. I finally said today I am giving them the power and they don't deserve it.

I went to the chapel tonight and said a prayer for Cory and put a prayer card on the tree. I asked God for a sign that everything would be alright. At the time, I didn't know he had sent one already. I was looking at the comments and found the following post:

Jennifer,

This morning I came to work and read your new posts about Cory. When I was done I stepped out behind our office with all of you on my mind, as I was saying a prayer I looked up and a huge butterfly flew right in front of me, it flitted around me and flew away. I have never seen a butterfly like that before, and never at my office in the middle of town. I think that butterfly was coming to "pickup" my prayer, and was going to stop at all of the other people in El Campo to pickup theirs, and deliver them to Cory. I think God sends us reminders, reminders that he is everwhere and in everything. He is working through the doctors to heal your precious Cory. My prayer for you today is, God didn’t promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and a light for the way. God bless you Jenn.

YSIC,

Jennifer Davlin

I started to cry when I was reading this post. Cheyenne asked if I was okay and I told her to read the post. She did and said that is so cool. I told her God is here...He came with the card that was delivered today. The hospital has a place on their website which gives the opportunity to create a greeting card for a patient. When we were first here, Cory received lots of them but he hadn't received anymore since the weekend. Today when we walked back in from lunch, there was a card waiting for us....a butterfly....I think God knew I was losing faith and picked up those prayers for us. Thank you Jennifer for sharing your story and restoring my faith in God....God is everywhere, it's only if you want to see Him.

Hug your families tonight...keep them close because you never know when it will all change...

Waiting....

October 25, 2010

Here I sit again at 1:00 am in the waiting room of the hospital. We have had an awful day. The doctors ordered a cat scan to be done this morning. At lunch, we received the report that Cory had a stroke on Tuesday and the damage is showing itself today.

We always knew that damage to Cory's brain was possible, you just can't have the trama Cory has gone through and not have some effects. Dr. Stevens can't tell us what he will be like when he is no longer sedated. She had a devistated look on her face. I think she realized the other day when we showed her and Dr. Thompson pictures of Cory just what they were working to return to us. They saw the silly, fun loving boy but they also have learned what the pictures don't show...a child who is very determined, smart, extremely headstrong and definitely wants to do things his way. I have told them through this journey that what you see with Cory as a patient is what you get with Cory as a child.

Dr. Stevens, Dr. Thompson and Dr. Whitehead made the decision today to slowly lift the sedation on Cory....now we wait and watch. It is so hard to go into that room and see Cory this way and think what is going on with him. I talk to him, touch him, tickle him and just lay my hands on him. I see him respond with a rise in heartbeat and breathing and his blood pressure get a little high. I as a mother who believes in the power of prayer and love, you can't tell me that Cory won't come back to us. He will...God has a plan for Cory, he isn't through telling this story and he has lots more to accomplish in his life.

When Hurricane Rita was making a beeline for Hwy 71 several summers ago, Wesley and I were making plans to board the house, pack the kids and move to safety. I had always been a person who obsessed about a hurricane coming and we should leave now!! When we were finished boarding the house, Wes and I sat outside in the dark talking about what we should do, I told him I think we needed to stay. I said you know me, I always want to leave but something is telling me that we should stay because we will be alright. I just had this strong force in my stomach telling me not to go. Wesley said what about the kids, we have got to go and I said you know I won't put them in danger but I think we should stay. Wesley said we would stay that night and in the morning, we would watch the news and then decide. I agreed. The next morning we woke up to find Rita had turned and then we watched the traffic jam across Coastal Texas.

My point to that story is I have that same force. I believe our God has more plans for Cory. I told Cheyenne this afternoon that God put us through this because Cory is supposed to teach his doctors how to deal with brain issues and AML. I have documented everything going on so when Cory is older and can understand more, I will explain to him what happened and I will let him read my blog. I believe Cory will have the detemination to become a doctor and possibly be the key to cure Leukemia. I do believe!

I am also realistic. I know now we will have issues from all of this. I had hoped we would recover and he would be like he was. I don't underestimate my son's will to live and I don't underestimate my son's desire to return to me. I have seen how he moves when he is being poked and pinched, he gets upset! I try to explain to him what is going on so he is not scared and will understand. I view Cory like he is locked in a box with no way to communicate with the outside world, only hearing what it says. I tell him everything will be alright, he is very sick and I will not leave this hospital without him by my side. I will no longer stay the night at McDonald's until Cory is out of ICU. He knows we leave even when we don't tell him...I firmly believe that because everytime we had problems, I was at McDonald's house. Coincidence maybe but twice, I don't think so, he knows!

I checked on him a few minutes ago. He was laying on his bed with his cross from his godmother, LaShelle, hanging directly over his wounds and his prayer blanket from St. Philip's across his feet. He has his bible verse that was picked out by our ACTS Teens which was turned into a wall hanging by one of Cory's good friends, Amy Beery Klatt. I remember Father Gary coming the other day and watching him pray over Cory. We both held one of Cory's hands and said the Lord's Prayer, a Hail Mary and a Glory Be to the Father. I closed my eyes and felt the power of pray coming from Father Gary when he held his hands over his wounds and said quiet prayers. My chest swelled with faith and I believed my son would be healed and returned to us.

I want to take the time again to thank you all for the prayers, words of encouragement, texts, cards and everything else you have done for our family. The doctors are the support system of Cory, helping him return to us. You back home are the support system for us. We have been on a roller coaster ride for the past 120 hours. It doesn't seem like we have been here that long but it also feels like it is longer.

I want to close tonight with a bible verse read to Cory by another one of his good friend Ester Rodriguez at his bedside this afternoon. It is Jeremiah 29: 11-14

"For I know the plans I have for

you," says the Lord. "They are plans for

good and not for disaster, to give you a

future and a hope. In those days when

you pray, I will listen. If you look for me

in earnest, you will find me when you

seek me. I will be found by you," says

the Lord, "I will end your captivity and

restore you fortunes. I will gather you out

of the nations where I sent you and bring

you home again to your own land."

Cautiously Optimistic.....

This post was actually supposed to be before the changes post....bear with me please....

October 24, 2010

We started the day with a visit from Dr. Stevens. She said we have a good report. Cory’s levels of plasma were looking good. His pressures were good and all his responses were normal. We like these short reports. She said we would get together at noon for our next consult.

We then were surprised by a visit from Jennifer Kollja and Jill Mach and they came bearing gifts. Jennifer’s little boy Colton, had made Cory a Halloween basket because Cory would not be able to go trick or treating while still in the hospital. He put some scary monsters, candy and a book. Jennifer said he put it in there because his mommy could read to him. He said just because he is asleep, he could still hear her voice and he is right. Jill and Holden, her son, picked out things to decorate Cory’s room for Halloween and Holden sent a little pumpkin, that’s because a big one wouldn’t fit. They also brought Casa!! and some tea from Mikeska’s…mmmmm, both were so good for breakfast. I am so blessed to have friends like them. After breakfast, Mom, Jill and Jennifer, forced me to leave the hospital and go for a walk around the block. I did not want to leave the 3^rd floor. I knew Cory would be in good hands but I didn’t want to go. I ended up going for the walk because I figured three against one, I would sooo lose. I have to admit, it did feel good to get outside and not think about the issues we are dealing with. It felt good to have a conversation that didn’t involve pressures or white cells or chemo. At one point, I did allow myself to think about tomorrow for a brief time but I pulled myself back to the present.

We returned upstairs and just hung around the waiting room. We had different people visit throughout the day and there was no changes. At our noon consult, the doctors said all his numbers looked good and we were still shooting for a Wednesday or Thursday timeframe for bring Cory out of sedation. They just want to give him more time for his body to heal and regain strength. Dr. Thompson said if we have a good 24 hours, we will have rounded the corner. We were hopeful but after the last scare, we didn't celebrate that much.

I was again "kidnapped" and taken out of the hospital. It was decided I am not eating enough and I was going to be taken to eat more than just an 8-pack from Chik-fil-a. I thought we were going a few blocks away but as we continued to drive, we went further. I started to have a panic attack...why are you continuing to drive....I can't go this far....what if he needs me? I almost crawled out of the door in the middle of traffic. I just wanted to get back to my baby!! We went inside to eat and a few minutes later, I received a text from Wesley saying he was at the hospital. Only then was I able to relax. I did eat something and felt a little better. We made it back to the hospital and there wasn't any changes. We had more afternoon visitors. We waited for the evening consult with the doctors but they didn't make it. We decided to go back to McDonald's house for showers and a good night's sleep. We were cautiously optimistic that things were getting better and again, we should have known better.....

Changes....

October 24, 2010

On this post, I want to explain what it’s like to walk into the Pediatric ICU and down to Cory’s room….

When you go to visit Cory, you have to go past a number of points in the journey. From the waiting room, there is a door into another world. There is a small room that has several doors to places I don’t ever see. On the wall to the left is a large picture, 6 ft wide and 5 ft tall of chalk drawing of babies in various stages. On the other wall, is a metal shelving unit that holds plastic covered pillows for us to use at night. You walk through this area through another door to a washroom. It has more pictures in black and white of kids playing in the water, on trees, in the park…just being kids and enjoying life. There are two sinks on the left with a large linen closet next to it. This holds pillowcases, sheets and blankets for us to use when we sleep in the waiting room at night. On the right side, there are four sinks. I have to share this story. The first time we went to see Cory, it was my mom, Cheyenne, Wesley and myself. My mom went to the double sink and we went to other ones. Mom started washing her hands and we just looked at the faucets and couldn’t figure out how in the heck do these things work. They weren’t motion operated, no faucets, what the heck. Just so happened we looked down and saw pedals on the floor. The light clicked at the same time, that’s how they work. Boy, did we feel stupid but we laughed and it felt good at the time. It is very important to wash your hands and there are gel dispensers all over the hospital. They stress wash up and do not spread germs. When you are finished, you have to be buzzed into the unit. Oh, and you have to wear a pink pass before you can enter as well.

Once you enter the unit, it is a maze of halls as you walk, you pass Pod 1 that contain 10 beds, keep walking to Pod 2 that contains 10 beds.  To the left is Pod 3 with 10 beds and that is where Cory is--Room 25 at the end of the hallway. Off our hallway is Pod 4 and it has 10 beds. During the days, these hallways are busy with dozens of nurses and doctors working on saving a child. At night, it is quiet and that is my favorite time to visit.

Some days that walk is so hard to make. You want to hurry up and get there but are terrified on what you will find. I make that walk getting my mind, heart and soul prepared. I look at the faces of his nurses and count the number of people standing outside of his door. I cautiously look in his window and let out a sigh of relief when I don’t see anyone in his room. My heart does skip a beat when I see a nurse or some other medical staff in there I haven’t seen before.

Cory is in the center with his head leaning to the side.

I then look at Cory and I am always taken back. I am posting a picture of what our baby boy looked like before he became so sick. His wonderful teacher, Stacy Ermis had taken some pictures in class on October 12. He looks so different now. They had to shave to right side of his head when they had to do the surgery. He has an incision starting in the front of his ear up and over moving to the back of his head and then turning up and coming to the front of his head stopping right at his hairline on his forehead. It is described as a backward question mark. Because of the surgery, he is swollen and today, Sunday, he is starting to bruise. He has two black eyes and it looks like he is bruising down the sides of his face. He has the breathing tube and another small tube in his mouth and kept in place with tape. At any given time, he has at least three IV lines and he has four monitor pads. Two at the top of his chest close to his shoulder area and two lower on his belly. He still has the two catheters in each groin. On his legs, he has two different things. He has the inflation wraps to prevent clots in his legs—I don’t remember the technical name. It inflates and deflates and it stimulates the circulation process. He also has a pair of boots. They look like ski boots…these are used to keep his feet in a normal position. Kathy, one of his nurses said when you lay down, your feet fall flat and if they stay in that position for a period of time, there could be some damage. These boots keep your feet in a position like you are standing.

Cory has three machines he is hooked up to…

1.       The monitor for his heart rate, oxygen level, blood pressure and one other thing I can’t remember

2.       The monitor for his breathing tube. I learned today what the different colors are for on this machine. As it works, there are green and red circles. Meagan said when we see a red circle, Cory is breathing. When we see a green circle, the machine is working. It was very reassuring to see lots of red ones.

3.       The monitors – 5 machines – for all the medicines he is receiving.

I can’t even count the number of tubes and lines running everywhere.

I always tell the nurses hello and talk to them…I want to know who is taking care of my Cory. I want to establish an open line of communication with them. I tell them what type of boy he is, his personality, his likes and dislikes, I tell them how he sleeps and how he loves. All they see is a very, very sick little boy and I want them to know who this little boy is. I tell them how he is throwing curve ball at them now, keeping them guessing, always on their toes is exactly the little boy he is when he is well. I warn them he is a flirt and he will have them wrapped around his finger when he is awake. I tell them the about the bond he has with his sister which runs very deep and strong—they may fight with such intensity but they love just the same. I describe their bond as twin-like but they are eight years apart. I tell them it is important to stress to her Cory will heal and be cured, it will just take time.

The nurses along with the doctors are working to save my Cory but I know they are not the ones that make the ultimate decision. They, along with all who are praying for Cory, are only the support team….we give Cory every opportunity he has to live and thrive! The ones who are in control of this journey are Cory and God. They are walking hand in hand down the long path to healing and returning to us….Father Gary came today and prayed over Cory and anointed him with oil. While he prayed, I held Cory’s hand. As the prayers were being said, I felt a powerful energy come over us. It was strong yet very gentle….I watched Father Gary hold his hands over Cory’s head wound and immediately felt the healing begin. It was a wonderful thing to experience….I thought I was witness to the rebirth of my son.

I will be honest, I am still unbelievably scared that we could lose Cory to this disease but I stop those fears and put my faith in God. He has carried us through so much in our lives. I just know Cory is not through, God needs him to teach us more….

I was having a weak moment earlier tonight…releasing some of the tears I have held for so many days, thinking how our life has changed and trying to accept our new reality when I heard in my mind for the first time in days….I love you Momma. I heard my baby boy’s voice just as clear as if he were beside me wrapped in my arms. I told him I love you too baby and don’t leave me cause I’m not leaving you….I am not leaving you…..

Roller Coaster....

First of all, let me apologize for the long delay I had in writing an entry. The long nights finally caught up with me Friday and the time when I usually blog and wind down came, I could barely keep my eyes open. I am not sure if the time appears when I am actually on the computer or when my entry posts. I had made a promise to myself that I needed to get on here and blog while my days are fresh and the information is clear but my body is telling me I need to take care of me. It sounds very selfish when I say it....my job as a momma is to take care of my children. For the past seventeen years, that is all I have done, focus on their needs, wants and desires. Like Cory, I am walking a tightrope in life right now. I have a force as strong as a freight train to stay strong and to be there for Cory because I want him to know he is okay and Momma is walking with him on this journey together but then I want to break down and cry my eyes out and never stop. It hurts to see my son laying there not responding to my "I love you" or coming to check on me when he has been outside playing. I have to got to stop and take care of me or I won't have the energy to help Cory finish the fight. This journey is not about me, it is about Cory and getting him healthy and home....

Now time to catch up on Cory's journey.....

October 22, 2010

We started out our day with a good report...Dr. Stevens met with us and said we had another drop in our white cell counts. We had dropped to 12K! Yea! She said it was wonderful news. She said his clotting levels were still not where we want it to be so we would go ahead and do another plasma replacement. Dr. Stevens said they were going to make a change with the plasma transfusions. In the past, they were doing blood tests on Cory every 4-6 hours and depending on the level, they would give plasma. Now they would be giving it as a continuous plasma drip. Proactive instead reactive. We were glad Cory was doing so well and feeling a little relieved. We had an uneventful morning and some visitors. This type of activity is good for Cory but they are really good for me. It gives me the opportunity to process the information I have heard about Cory but it also gives me a break mentally from this.

At our lunch consult, we had more good news. Cory's white cells count dropped more to 5K. Woo Hoo!! We asked them just what number are we striving for and Dr. Stevens said 0. They reported his clotting issues were slowly getting better and everything looked good.

At this point, we were bouncing on air. We thought Cory was doing well and the doctors were shooting for Tuesday to bring Cory out of sedation. We started to celebrate just a little to soon....

Mom and I had left the hospital around 3:30ish to go check into Ronald McDonald's House. It is a group home type place where families receiving cancer treatment that do not live in Houston can stay. There is a nominal fee and you are assigned one chore that must be preformed once a day. We were assigned to straighten magazines and chairs in the great room. When we are able to get back to the hotel, I will take pictures of the house and post them. We had received all the information about the house and we returned to the hospital to pick up the rest of my stuff. As we were waiting for some of the visitors to leave the waiting room, Cory decided to change the direction of our path. I am going to throw a medical term out, ICP, Inter cranial Pressure. This number is important with Cory, this is the amount of pressure in the brain. We want to keep it as low as possible. A monitor is inserted into Cory's head to give us a reading of what's going on. We would watch those numbers and hope and prayer they would stay the same. Cory threw us a curve ball, his numbers shot up to 40. The nurses moved into action and administered medicine to bring the numbers back under control. They were on the phone to Dr. Whitehead, our neurosurgeon and to Dr. Stevens and Dr. Thompson. Cory’s blood pressure also jumped and medicine was also administered to bring that under control as well. We were notified that all of this occurred. Dr. Stevens said the meds brought Cory’s ICP back down to 35 and his blood pressure was back into acceptable range. Dr. Whitehead ordered another cat scan or CT to see what was causing the spike in numbers. Dr. Stevens said Dr. Whitehead was probably watching Cory’s CT as it as taken and her gut was telling her Dr. Whitehead would probably take Cory back into surgery and see what was going on. While we were talking to Dr. Stevens, Dr. Thompson walked in. He said he received an update and they found a small bleed right along the drain tube. It was not a lot and it looked like it was because the tube was clogged. He said Dr. Whitehead looked at Cory’s ability to maintain his brain and blood pressure numbers and the amount of blood and where it was at and decided to not go back into surgery. He was going to see if Cory could take care of himself. I asked Dr. Stevens how long the pressure level was at 40 and she said only a few minutes, the nurses moved quickly. I asked a question but was scared on the answer—is that enough time to cause any damage and she answered no. Dr. Thompson said we still had plenty of room for Cory’s brain to expand and he didn’t see any place that it might have been pushing on the skull or if the spinal fluid levels had changed, meaning his brain had expanded. We were still okay. We were devastated this happened but relived that he was able to maintain the numbers. He brain pressure had finally settled down to 30 and he maintained his blood pressure. It was a small step backwards….

Later in the evening, Cory threw us another curve ball…his brain pressure shot up again, this time to 37. Medicine was administered and his pressure levels returned to 20, this was lower than where he had been since Tuesday, which was around 25. His blood pressure was up and down all night. They were able to return it to acceptable levels with medication.

Dr. Stevens and Dr. Thompson said this is definitely a step backwards but remained positive. They said they and Dr. Whitehead felt Cory had not sustained any brain damage because he was responding appropriately when they checked his pupils and when the sedation was lifted slightly. They both said this pushes the time frame back a few days for bringing Cory out of sedation.

During our consult, Dr. Steven and Dr. Thompson said they apologized for maybe jumping the gun on the celebration about the progress Cory was making. I told them not to be, we had brought Cory from the doorway of death and the strides Cory was making were celebrations we needed to have. We all need to feel joy when you look into the face of death. I felt this was God’s way of helping the doctors. He gave the doctors the time to tend to the brain bleed and when they had it corrected, He took it back by maintaining the pressure. This gave the doctors time to tend to destroying the cancer cells and correcting the clotting issue. After the blood and cancer issue was under control, God gave the brain pressure issue back to us and the doctors worked that problem.

We were in for a long night…

October 23, 2010

We had another consult with the doctors Saturday morning. They were still watching the pressure issues but they were not going to rely on the monitor anymore. They decided to remove it and they also removed the drain tube. We all panicked, why did they decide to do that? Have they lost their minds, how were we going to be able to tell if the pressure was increasing and what if something happens to our precious boy because of this? I talked to his day nurse, Meagan and she said she felt the same way when she came on shift. She said they had been watching that monitor too closely and not watching how Cory responds. She said they check his pupils, reduce his sedation meds to see if he responds to pain and if he moves in the most natural way. They were going to let Cory tell them what they needed to know . I said that’s what Cory has been doing this entire time, keeping us on our toes.

 Sometimes when we are in the room, we see the most horrible thing. Cory starts moving his shoulders and begins to act like he is choking. It is the most terrifying sight a parent can watch when your baby  moves this way. Both Wesley and I panic and ask “Um, nurse, is this normal?” They always answer yes, it is perfectly natural and that is what they want to see every time. It means he is feeling something in his throat and our natural reaction is to gag. It was a relief to hear but even though it is a good reaction, I could do without the fear it causes.

We had a long day on Saturday. We were worried about Cory because he continued to have the increases in blood pressure throughout the day. I talked to one of his ICU doctors about what might be causing these increases and he said actually we don’t know. The only thing they could think of was Cory was irritated about something…my answer to him was, yes he is pissed. My own personal opinion about what had happened in the past 12 hours was he knew his Momma and Nana left the hospital and went to McDonald’s house and didn’t take him; Sissy was at home and didn’t take him and he had to stay at the hospital while everyone else was having fun. The doctor just smiled and said maybe your right.

He continued to receive his chemo treatments and he also started to receive something else that afternoon. Since Cory had been in the hospital, he has only received sugars to for nutrition. Today, he was starting to receive TPN and lipids. I will get the official name of the TPN and I can’t officially tell you what it is but it is similar to Gatorade and it is yellow in color. This is very good because Cory loves yellow Gatorade and the lipids are white like milk. I told his nurse Meagen Cory is very happy because he is getting some Gatorade and a glass of milk, his two favorite things although he would be happier if the milk was pink and tasted like strawberries. She just laughed.

This brings us to Saturday night…I’m sorry if the post is not as detailed as the others have been. As I said at the beginning of this post, my body was beginning to run down and the details were beginning to run together. This post hits the most important details of Friday and Saturday….my body is telling me to take a deep breath and just breathe….