Thursday, February 6, 2014

February 6th 2013

February 6th was surgery day!

We woke up early again, the neurosurgery team brought the MRI images in to show us, but we had no idea what we were looking at. She told us that the goal was resection, to remove the entire tumor. She didn't tell us what kind of tumor it was or what kind of treatment we would be looking at after surgery.

That morning was hard on Archer. He was starving. After two days of not getting to eat much, he was ready to eat and they wouldn't let him. He was really becoming Hulk at this point. The steroids were making him aggressive and grumpy too. At one point he pushed the call button and yelled at the nurse that he was starving and she needed to bring him something to eat NOW! We laughed because it was so out of character for him, but I know he was hungry too.

They came to get him for surgery around 9:00am. Just Chance and I went down with him. They showed us the waiting room we could wait in, it held about 8 people. We told them we would be staying upstairs on the 9th floor because it was roomier.

From there, we went to the holding room. We snuggled and I sang to him some more. We tried to keep the mood light and keep him happy. He picked bubble gum gas again for his gas mask. Chance went back up to let everyone know what was going on while Archer and I waited for them to come get him. He played iPad for a little bit and then they wheeled him in.

Once he was back I went upstairs so we could move all of our stuff out of the room he'd been in. We took some stuff to the car and someone took some laundry (my sister I think) so that we would have clean clothes to wear. Funnily enough, Archer had tons of clean clothes and was wearing hospital gowns. I didn't pack anything to wear for myself except a pair of yoga pants. 

Once there was nothing else to do, we waited. The waiting room was full of family and friends. You always expect your family to be there, but it was good to know that they were there to just be by our side through such a scary time. My friends who came, you know who you are, I will always appreciate you being there. And my online friends and family who I know would have been there in a heartbeat, sent a fruit basket which we all appreciated. It was perfect. 

They called from surgery around 11:00am to say that everything was going ok, he was stable and they would call again in an hour or so to update. They didn't call back again until around 2pm to tell us they were finished with surgery. The nurse was very straightforward, didn't give any details of how he was so I was petrified. They told us surgery would take around 6 hours and it was no where near that. 

We met the doctor in the waiting room and she told us that everything was great. The tumor was out, but he would need a follow up MRI the next day to be sure. I was so relieved.

After a few minutes we were allowed to go back, one at a time to see him. When I got to him, he was crying and so scared. His head was swollen and the incision and stitches were ugly in comparison to the fluffy blonde hair he had when he went back. It broke my heart to see him like that. It broke my heart to hear him crying and asking for me. He was dozing in and out of sleep, and jumped every time he fell asleep. 

The recovery time was the absolute worst for me. He was moved into an ICU room and I did not want to be in there. It was small and cold and uncomfortable. They were limiting the amount of visitors to 2-3 so I stayed in the waiting room with Foster for most of the day. He needed me too. 

Once Foster left I stayed in the ICU room with him. Chance had stayed with him most of the day, so he took a break. Once he started waking up, it was worse. He flinched every time the nurses came in, the catheter was painful and he didn't want anyone to mess with it.

We spent the night in that room, no one got any rest. Archer was sleeping, but he was waking constantly, scared to go back to sleep. They only had one chair that semi reclined and just a regular waiting room chair, so Chance and I rotated who slept in what. At one point he woke up jumping and shaking, I think from a nightmare/fear and Chance came flying up out of his chair. I think he thought it was a seizure, but he was still half asleep.

I can remember surgery day so clearly. There were some very good times, knowing my friends and family were there to support me as well as Archer. Feeling the love and prayers from everyone, both in person and online. I still say it was nearly tangible. You could almost feel the presence of prayer and love. But it was also really hard. It was the first time I'd seen him in pain and I felt so helpless. Sadly though, it got worse before it got better.

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Wednesday, February 5, 2014

February 5th 2013

MRI day. If you've never stayed overnight in a hospital, you probably don't realize that many doctors like to wake you up to do their morning rounds. The neurosurgery team at OU Children's likes to do theirs especially early, like around 5am. Archer woke up hungry (of course) that day, and he wasn't able to eat because of the contrast dye they use for MRIs. He was so unhappy about being hungry and having to have his IV that he stayed up after the doctors left. It wasn't the greatest start to the day.

I was pretty used to little sleep since Foster was only five months old at that point, but (not hardly) sleeping upright in a chair was pretty miserable. I let Chance rest a little longer and Archer and I just sat watching cartoons. He was getting really restless about not getting to eat and I told him he was turning into the Hulk about it.

They finally came up and got him around 9am for the MRI. We went to the MRI prep room and waited. I let Chance sit with him, and go back with him while I waited in the waiting room. Once Foster arrived I took him upstairs to Archer's room for some quiet alone time.

I had asked the hospital patient care for some tips on explaining what was happening and explaining the surgery to him. She suggested we tell him there was something kind of like a ball in his brain that needed to be removed.

Most of our family came up to wait during the MRI and to see him after. His teacher came to see him that evening and brought toys, notes, and cards from his classmates and other classes. He loved seeing it all.

After getting the MRI, his stomach was upset so he was no longer hungry. He didn't eat anything but a popsicle that evening even though we pushed for him to eat, knowing he couldn't eat again in the morning because of surgery.

Eventually everyone left and we talked to him about what was happening, why he was there and what was going to happen the next day. He didn't really ask a lot of questions then either, he wanted to know if it would hurt, and we told him he would probably have pain, but we didn't know what to expect. Looking back now, I wonder if it was fear or just that the tumor was limiting his ability to think clearly, but it's surprising that he didn't ask more.

The next day was surgery day. I'm sure there's more I could add to this post, but this day was a rough one for me. Not necessarily emotionally, but there was just so much going on, with no sleep, trying to pump and nurse and love on Foster while I had him but also making sure that Archer's every need was met. I can't remember as much, everything feels foggy.

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Tuesday, February 4, 2014

February 4th 2013, Part Three

A barrage of other doctors came through, still asking the same questions. An older (non-student) doctor came in and spoke more at length. Archer was being admitted, they would be doing an MRI in the morning.

Chance and I just sat there, staring at each other, staring at Archer. We didn't know what to do or what to think. Or what to say, how do you tell people news like that? I sent a text to some family members letting them know, and also asking them to pass the information on so I wouldn't have to tell everyone. It was so surreal and such a strange feeling to be sitting in this hospital room, hearing news like this. It was just the three of us, and I felt like it was a dream.

Archer was scared, but he wasn't really asking questions. They came and put an IV in and he was so upset. He was going through a phase where shots and pain were so scary and nearly traumatizing. It wasn't the typical fear of a shot, he was having anxiety about the pain that he thought he might feel. I sang "You Are My Sunshine" like an iPod on repeat, trying to keep him calm and happy. As calm and happy as possible anyway.

That was my goal, my job as his mother. He didn't need to know that I was scared out of my mind or that his daddy had tears in his eyes as he sat behind him. So we held it together, we accepted that this was part of God's plan and he would see us through it.

I left the hospital when they were moving him to a new room so that I could go see Foster and nurse him before he went to bed. My mind was racing in the car alone, had I done this? My grandma and all of her siblings had cancer. Were my genes causing this?

After praying and then seeing and holding Foster, I felt better. It was like a weight had been lifted. I prayed for peace and acceptance, and I got it. I went back to the hospital renewed and ready to face whatever was coming.

He could only eat until midnight because his MRI was scheduled for the next morning. At this point he'd only had a few chicken nuggets and then he fell asleep before he could eat much else. He was miserable with the IV in his arm, but he actually went to sleep and slept for a little while. He was extremely restless though, and woke up early when the doctors came in for rounds the next day.

So that was our first day, to the best of my knowledge. I'm still working on the following days posts, trying to keep the memories separated by day.

Here is the post I wrote last year after he was admitted.

February 4th 2013, Part One

And again, other posts from Archer's Journey.
February 4th 2013, Part Two: Looking Back
January 29th
The Week After
January 22nd
January 6th

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February 4th 2013, Part Two: Looking Back

One year ago today. It seems like a life time ago, not just one year.

I took Archer to school and then went back to get him for his 10am appointment. He was excited and hopeful that he was going to get glasses. Once we were back, the doctor stated the his right peripheral vision was unresponsive, and that he thought we should go somewhere ASAP to get scans done. He said he wouldn't wait until the referral from children's hospital.

I took him back to school and talked to Chance about what he said. I googled all of the symptoms as a whole and talked to a friend who is a nurse. I knew it wasn't something I could keep ignoring. I called the family doctor back and asked the nurse if we should go to a local hospital or wait and she said "No, go to Children's Hospital now." So after having three different medical professionals confirming my gut instinct, I packed a bag for Chance and Archer and we went.

We stopped at McDonald's to get some chicken nuggets since he skipped lunch while at his doctor's appointment. We stopped to drop Foster off at my cousin's house and then headed to the E.R.

I was expecting to sit in the E.R. waiting room for hours, but after we were checked in they called him back quickly and sent us to an exam room right away. From there we waited about 30 minutes while multiple doctors and students came through asking us the same questions over and over.

Eventually a doctor came through and told us that we were headed for a C.T. scan. It was an open machine and took less than five minutes. Then the waiting began again.

I can still clearly remember the next doctor that came in. He spoke very heavily accented English, but I could tell by the look on his face that it was serious.

"The C.T. is showing a large mass."

The one thing that I understood.

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