Thursday, August 28, 2014

Before the Surgery

From the moment we enterd into the PICU until the moment Magnus went into surgery, we felt nothing but support. Everyone was so kind and sympathetic. Shortly after we were admitted I got a text from my mom saying that she and my dad were on their way to come and sit with us. We talked to several doctors and nurses about various things and just answered a lot of questions. My parents arrived and by that time we had been completely admitted and they had allowed Magnus to finally go to sleep around 2 AM after examining him thoroughly.

My parents and Andy and I just kind of sat and talked about different things. It was nice to get my mind off what was happening for awhile since they weren't going to come and get Magnus until about 4 AM for his MRI. Around 3 AM the nurse tried to wake him for his neuro exam and he was furious. He was screaming and kicking at her and telling her to go away. It was hard to watch. Andy finally asked him if he wanted mommy (I was hiding in the corner plugging my ears, trying not to hear him be so upset) and he said yes. So I went and crawled into his bed and snuggled up with him. I sang to him and rubbed his back and he fell back to sleep. I loved that time with him.

After that, Andy and my dad gave Magnus a blessing. It was a wonderful and comforting blessing. I cried silently and just squeezed myself into a tiny ball in my chair. I just kept thinking that I wanted this to be a nightmare, or anything, really. Shortly after the blessing my parents left. And then shortly after that the nurse came to take Magnus down to meet the anesthesiologist and have him intubated for his MRI. He was sleeping peacefully as we followed his bed down the hall and into the elevator. We went down to the imaging area where we met the radiologist and anesthesiologist. We talked to them about what was going to happen and signed a bunch of release papers (seriously, I think I signed away Magnus' life about 20 times that night with all of his various admittances and procedures) and then they took him away after I gave him some hugs and squeezes. 

Then we just had to wait. They told us the MRI would take about 2 hours. Andy and I talked and discussed and sat in silence and talked some more. We talked abut how different our life was going to be, whether that difference would only be for a few months or whether it would be much longer. We talked about our children and what we need to do to make sure they are given enough attention and cared for and that they know without a doubt how much they are loved and adored. We rested. Andy tried to get me to eat. I couldn't. 

Finally our baby was brought back to us. It was terribly sad and horrifying to see him in his state when 12 hours before we had thought him a perfectly healthy and happy boy. A boy who was supposed to start preschool in a week, a boy who would have his birthday soon, a boy who loved being the youngest, adored by his siblings, and being spoiled rotten. They wheeled him into his room and got him all set up, connecting him to computers and machines that beeped and blipped and monitored and recorded information. 

Andy's parents arrived around then. They were in it for the long haul and ready to stay with us throughout the day. Andy spoke to them and I sort of just sat in my chair, curled up in a ball, still not able to completely comprehend that this was happening to my child, my baby. We got a new nurse around this time, his name was Beau. He kind of waltzed in like he owned the place and I wasn't sure what to make of him. Our night nurse told us that he had been there for over 10 years and he was the best, that he made sure his patient was getting exactly what they needed, and that he advocated for the patient's parents. This made me happy, especially when he asked if we had spoken with the neurosurgeon yet and when we told him no, he said, "I'll take care of that." Ten minutes later our neurosurgeon came walking in with his team of doctors to tell us what the heck was going on since we hadn't seen him in over 8 hours when we spoke with him right after the discovery of the tumor in the ER. They told us that the report wasn't ready from the MRI, but as soon as it was they would be in to talk with us. And then he kind of gave Beau the side-eye and I giggled.  I was a glad to have something, anything--to know even a smidgen of what was going on behind the scenes. I was glad nurse Beau was on my team. 

For the next little while I sort of just wandered around the room. Magnus would have episodes where his sedation would wear off all of the sudden and he wouldn't be fully awake but he would start thrashing around and try to pull his breathing tube out. He would claw at his IV's and just be completely restless. He would gag and try to cry and it was a just the most awful thing to witness, ever. 4 or 5 medical professionals would have to come and hold him down and administer more sedation meds. They said they used 50% more than any other child his age. They told me this was good. It means he is a fighter. I know they probably say that to all parents, but it reassured me anyway. I know he is a fighter. He has always been such a tough, strong kid. 

After one of these episodes Andy and his parents went for a walk. It was just me and my baby and nurse Beau. Beau talked quietly to Magnus in the sweetest way, telling him everything that was going on. Beau asked if I would like to help bathe Magnus in preparation for his surgery. Of course, I said yes.  We took off his clothes and washed him and then Beau asked if I would like to crawl into bed with Magnus and snuggle him. I was not going to say no to that! I got in bed and held his hand and sang him songs. Magnus started getting restless again, his sedation meds wearing off. Beau turned on some calming music and told me to just whisper in Magnus' ear. It worked for a bit, he calmed down. But then the thrashing began again and I had to hold down one arm and 5 medical people rushed in and held down other limbs. While we were waiting for his meds to come, Magnus pulled out an IV... That kid is seriously strong. No one could figure out where his super human strength was coming from. The IV team came and placed a new line. Finally the meds kicked in and Magnus calmed down. I got out of his bed at this point and shortly after that the surgeon came back with news from the MRI. 

Dr Brockmeyer (our surgeon) took us out to look at the images from the MRI on the computer. He showed us exactly where the tumor was, where it was spreading to, and how it was blocking CSF from draining. He explained what was going to happen with the surgery. He explained the risks, the side effects that may happen, the worst case scenarios. It was so much, just too much that could go wrong. It was very overwhelming. On the list that may happen was things such as: right sided weakness, swallowing problems so severe that he would need a feeding tube, possibly needing a head drain for the rest of his life, paralysis,muteism, reverting back to acting like an infant, and many other equally horrifying things-- including death, of course. He also mentioned that they could be temporary or permanent.  As always, they ask if we have any questions and Andy and I just look at each other with confused looks, wondering if we should have questions after the information given, that our son could be dead sometime in the next few hours. 

We went back and sat in Magnus' room, waiting for the time when they would come and get our baby and take him from us for the 4-6 hour surgery. I pretty much stayed silent, listening to Andy and his parents and our nurse make small talk. I watch Magnus and wonder what he's thinking right now, wonder if he has any inclination of what is going on. 

Around 10:30 the phone rang and it was the surgeon telling us they are ready for Magnus. Beau gets Magnus ready to transport and we all walk along behind his bed and follow him down to the OR. My heart is beating frantically and my stomach is in knots. We arrive in the OR and meet the anesthesiologist. We sign away Magnus' life again and then the surgeon arrives. Magnus is wheeled down the hall and they stop and allow us one last goodbye before we part ways. I kiss him over and over and squeeze him tight. As soon as I stand up I fall into Andy, sobbing hysterically. I can't take it. No one should ever have to go through this. No one. Andy gently pulls away from me and gives Magnus his own goodbye while I stand there with my hand over my mouth, stifling my sobs and shaking uncontrollably. He comes back and puts him arm around me and we watch them wheel our baby away, down the hall where they will attempt to save his life and remove the tumor.


Ryan and Erin said...

I am bawling reading this post. Boston is only a few months younger than Magnus. I can't imagine how you must feel. I'm praying for your family. *Hugs*

Matt and Joanna said...

These posts are hard to read.... I am thinking about you and I'm grateful to be able to read these updates. He is strong just like his mama is!

Lisa said...

If tears could come to my eyes, they would be there. Damn cancer. I don't know how you had the composure to take pictures. Love you Sarah.