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….