Can you believe I have finally sat down and updated this blog?!?! I am sure some of you are thinking 'Well, it's about time you shared what's going on with Cory.' I want to apologize for the long time between posting...Cory keeps us, Mom and I, on our toes during the day and when he finally goes to sleep at night, I am just too tired to blog. Tonight, I drank some caffeine too late in the day so I have the energy to stay up and post.
Quick rundown of Cory's progress:
-he can walk without assistance
-he can eat without assistance
-he is trying his best to talk again, he will move his lips but the sound is so low we can't hear it BUT he will say 'No' when he doesn't want to do something...some things never change. :-)
-he can brush his teeth
-he throws a fit when he takes a bath
-he still loves Taylor Swift, country music singer
-he still loves his Nintendo DSI, handheld game
-he can write his name
-he loves all his therapists and nurses. He gives the smiles and hugs when he sees them
-he is starting to understand more
-he can put on his shoes by himself and gets dressed with very little help. He has a hard time getting shirts on
-he can still give the looks he is know for...if he is mad at me, a look that says 'would you do something already?!?'or when he is trying to pull a fast one by you
December 8, 2010
I will start from here and try to give details..."try" being the key word...
We stayed on the 10th floor until December 5, 2010. Our counts started dropping and our doctors decided it would be best if we moved to the 9th floor, the cancer floor. Our nurses are trained to handle and watch for things that the nurses on the 10th floor are not, any reactions to meds, any open wounds, how to handle his IV's and things like that. We have a very nice room but not a good view. We overlook a parking garage and the top of St. Luke's Hospital but we do get to see the helicopters land at St. Luke's and if we look to the left, we can see Life Light land on top of Methodist Hospital.
Our days consisted of therapy in the morning and afternoon and were pretty quiet until Wednesday, December 8, 2010.
A little background...
Cory has what is called a PICC line inserted into his upper arm. It is inserted in a peripheral vein and then advanced through increasingly larger veins, toward the heart until the tip rests in the distal superior vena cava, the large vein that brings blood from the head and arms to the heart or to the cavoatrial junction, the point at which the superior vena cava meets and melds into the superior wall of the right atrium of the heart. The PICC is a form of intravenous access that can be used for a prolonged period of itme so we don't have to stick Cory every time meds need to be given or blood drawn.
This is not Cory's arm, only a picture I found on the Internet to give you an example of what it looks like.
This is how the PICC is inserted.
We had been having issues with the PICC line since we left PICU. We could not get blood return in the gray port, only out of the red and even then, we had to position Cory's arm in a certain way because there was a bend in the line at the shoulder. The problem with the gray port was a type of film had developed over the end. It was like a flap meaning when something was pushed through it opened, when something was being drawn out, it closed. It also was gradually getting worse because the flap was not letting anything go through. We had been able to manage with the problem but when we moved to 9th floor, the bottom dropped out. That Wednesday morning, we had someone come in and try to break loose the flap. It worked but little did we know what it would cause that afternoon.
Wesley and I were sitting with Cory trying to figure out what he was saying. Cory had something on his mind and was trying to tell us but he just couldn't say loud enough for Wesley or I to hear. I got up and grabbed his MagnaDoodle and wrote his name at the top. I put the pen in his hand and told him to write what he was trying to tell us...He was frustrated, we were frustrated. He started moving the pen around and wrote this:
Well, needless to say tears flowed and smiles abound...it might not look very good but it is his name written with his left hand. As I was hugging him, he felt awfully hot. I asked Wesley if he thought so and he agreed. We called a nurse to check and she said his fever is elevated and he was red and with those statements, things started changing. The nurse drew a blood sample from the red port and gray port and sent it to the lab. Cory was immediately re-connected to his IV in both the red and gray port with fluid drips and was not allowed to be disconnected until further notice. We received word from the lab that he had some type of staph infection. He was put on two antibiotics, Zosyn and Vancomycin. This was all completed within a two hour time frame. I have never seen people move so fast but thank God they did. Cory was facing a life-threatening infection and we caught it in the nick of time. He received these meds every eight hours and we had to do blood work every morning to see if the antibiotic levels were high enough to fight the infection. By that Sunday, December 12, 2010, the doctors were confident Cory had beat the infection so they discontinued the Vancomycin but left the Zosyn on for the remainder of the 10 days. We were very lucky...it was determined that the infection was caused by the flap that had developed on the gray port in the PICC line that was dislodged. We decided Cory would have this line removed and a new one inserted into his left arm.
We continued with our days recovering from the infection and going to therapy twice a day. Cory regained the strength he lost and then some. He was slowly becoming aware of his surroundings. He re-discovered his right side but at that point did not have any movement in his right arm. Toward the end of the week, we had a schedule worked out for Cory the week before Christmas. We were at the end of our monthly chemo cycle so that meant bone marrow and lumbar puncture procedures. Those were scheduled for Monday and we were also going to do a flow study on Cory's spinal fluid. It is a procedure where contrast is injected into the spinal fluid, picture are taken and then pictures are taken again 24 hours later. We needed to know how the spinal fluid flowed around Cory's brain. If he passed, he would receive chemo into the spinal fluid. If he didn't...well, I really don't know what would happen. On Tuesday, we scheduled a dentist appointment. What?!?! Why a dentist appointment while Cory is fighting cancer? Cory needed to have his teeth cleaned, x-rays taken and two teeth checked for possible cavities. This was my decision because I wanted it taken care of now while we could and not wait and the cavities get worse and we would be in a position that we couldn't. Wednesday, we didn't have anything scheduled. Thursday, we were going in to change the PICC line and Friday was Christmas Eve.
Results of the week:
Monday: Cory did good during the procedures. His bone marrow and lumbar punctures came back clean!!!! and the flow study contrast given and first set of pictures taken.
Tuesday: He had a good report from the dentist. No additional cavities, several loose baby teeth, sealants applied to his molars and the cavities filled. Second set of pictures taken for flow study.
Wednesday: Recovery day from above procedures. Passed flow study, chemo would be administered to the spinal fluid.
Thursday: PICC line replaced and chemo given. Third round of chemo started.
Friday: Recovery day from the week's procedures and spending the afternoon with family.
We had a special guest come and stay with us starting that Wednesday evening....CHEYENNE!!! I had two of the happiest children that evening...Cory was happy to see his Sissy and Chey was happy to see her Bub. Cory did not let go of her and he did not let her out of his sight. Cheyenne slept with Cory the week she was here and they looked like a set of twins, on their sides, facing each other and holding hands. I took numerous pictures of them but promised Cheyenne I wouldn't post them because she had morning hair.
Christmas Weekend
We had a long Christmas weekend. It started with the kids spending time with their dad and Shanna Friday evening. Saturday, my dad and Wesley's dad and sister and her husband came to visit. Sunday, Wesley's mom and my Mom came. It was wonderful to be able to spend the holidays together. I know you are saying 'But you were in the hospital?' Yes, we were in the hospital without Christmas lights and a tree, not able to attend any type of Christmas Mass, didn't have a Christmas Dinner but Chey, Cory and I had each other and that was enough for us. It didn't matter that we were here eating McD's at 2:00 Christmas Day watching Cory continue with another round of chemo...we sat together, saying our prayers of thanks for Cory being here, all the blessings we have received this year and thinking we would gladly give up this year's traditional Christmas to have more Christmas's with Cory at home in the future. I am posting this one picture of the kids Christmas morning...Sorry Chey, I couldn't resist...Love ya baby girl!!!
My Best Christmas Present Ever....
I am going to stop here for the night. My next post will catch everyone up...my eyelids are getting very heavy.
Love to all,
Jenn