Friday, August 29, 2014

The Longest Day of My Life

I finally added photos to this post. They are in chronological order starting with after they had taken Magnus for surgery when our children came to the hospital to see us.

Telling the kids about Magnus and learning about tumors

Trying out all of the gear that doctors and nurses wear

 When we came up to see him they were taking an x-ray to make sure the breathing tube was placed properly because M had tried to pull it out yet again.


 Nurse Beau... best nurse ever.



 Daddy and his boy

 Swollen little eyes and face

 They had to go in from two different locations because the tumor was so large and difficult to remove

 Jean and Matt

 I had been awake for way longer than anyone should be at this point

 I spy a sweet baby face

 Our home for the next couple weeks

It's been a crazy week, obviously. The days fly by here at the hospital with procedures and therapy and just making sure Magnus is happy and taken care of. I need to hurry and catch up on this here blog before I forget too much because the days are already running together.
So, we are to Sunday morning/early afternoon. They took my baby away and told us where we could wait. Because it was a Sunday and semi-emergent surgery, nobody else was in the OR waiting room. I loved it. No one was really even in the hospital besides doctors and nurses. Andy and his parents went into the waiting room and I decided to go for a walk around the hospital. Like I said, nobody was there. It was empty and quiet and perfect. I called and updated my mom so she could update everyone else. Andy's parents were keeping his side of the family in the loop. I found the Child/Life Specialist and spoke with her about talking to my other children and explaining what was going on in simpler terms. I had arranged for Rachel to bring them to the hospital before the surgery so they could see Magnus but they had moved his surgery up unexpectedly, so they didn't get to see him beforehand.
Rachel brought my 4 kiddos to the hospital a little bit later and it was so good to see them. I went and got them at the hospital entrance and led them to the OR waiting room where Rochelle (The CLS) met us. She had little cloth dolls dressed in hospital gowns that had blank faces so the kids could color them with markers. She also had a bag full of hospital stuff like hair caps, face masks, gloves, bandages, and other stuff. We explained in very simple terms what was wrong with Magnus and what was being done to fix it. We showed them the photos that we had taken beforehand of Magnus and explained what all the tubes and wires were for. We asked if they had questions and they didn't really say much. At one point Daphne had to go to the bathroom and I walked away from everyone with her to take her there. She looked up at me with very sad eyes and asked, "Is Magnus going to die?" I just about lost it but kept it together and told her that everybody dies sometimes and we would just have to see how Magnus was doing and we would find out more later. Kind of a crappy answer, but she seemed pacified, so I didn't press it.
After the kids talked to the CLS and were tired of coloring their dolls, Rachel and I took them up to the playroom. I left them there since Rachel was going to take them home afterwards. Rachel gave me a big hug before I walked out and I started crying again. I said goodbye to my cute kiddos who were already enthralled in the things they were playing with and I walked slowly back down to the OR waiting room.
The doctor had told us that he would call in updates every couple hours. When I got back Andy was sleeping in one of the rooms off of the waiting room and his parents told me the nurse had called. She said that they had just started the surgery about 20 minutes before and they had already given him a blood transfusion, but that he was doing well. I was hoping to get away without a blood transfusion, but apparently that wasn't going to be the case.
I took some pillows and went into another quiet, dark room and tried to sleep. I just lay there, wishing for sleep to come (it had been about 32 hours since I had slept (minus a short nap I had taken during the day on Saturday) and I was just beyond the point of tired by now) but it didn't happen. Every time I closed my eyes I just imagined Magnus on the operating room table with the back of his head cut open and it made it impossible for me to even feel tired.
After about an hour of wishing for sleep to come I got up and went out to where Andy's parents were. We started talking and it was nice because the time passed a little more quickly. Another phone call came from the nurse and she said they had just reached the tumor and sent a piece off to pathology for a biopsy. They had to give Magnus another blood transfusion, but he was still doing really well. Other people came in to see us... the hospital chaplain, a social worker, and others. I didn't really feel like talking and they didn't stay too long.

Nurse Beau came down to the OR waiting room and brought us a soda. He sat and chatted with us. Did I mention how much I loved him? Because he was the best. Andy woke up a little later and joined us and we passed the time by talking and talking and talking about whatever. Finally it had been about 5 1/2 hours and the update phone rang again. It was the nurse saying that they were just cleaning up and making sure everything was okay inside M's head and then they would close Magnus up. She said he was doing really well and while it was a very difficult surgery, they had gotten as much of the tumor as they possibly could without damaging Magnus' brain. She said it would be about another hour and then the surgeon would be in tot talk with us.

We decided we better grab a bite to eat since we wouldn't want to leave him once he was back in the PICU. I was slightly relieved but wouldn't be completely relieved until I saw my boy again. We headed out and grabbed some Rubio's and came back to the waiting room to eat it. We had just settled in and started eating when the surgeon walked into the room.

Dr. Brockmeyer looked exhausted and a little down. He explained how the surgery had gone. He said on a scale of 1 to 10 (10 being the most difficult) it was a 10. It was one of the hardest resections he had ever done (hence the reason the surgery took nearly 7 hours). He told us that he removed about 90% of the tumor, but that there was a tiny nub that was so attached to the brain stem that he didn't dare touch it for fear of damaging Magnus beyond repair. He went over how Magnus had done (fabulously) and he would come talk with us more in the morning after they did the follow-up MRI to make sure they removed all that they thought they had.

Relief filled me at that point and I could finally eat without feeling like I was choking down sawdust. My food tasted so good. I was starving at that point, having hardly eaten anything since the night before. The doctor had told us he would be in recovery for a little while and then we could head back up to the PICU to see him.

We went up after we ate and he had just arrived in our room. He looked so swollen, but so beautiful. He still had marks on his face from being facedown for so long. I just wanted to hold him so much that my arms ached. I settled for tickling his arm and touching his face. I was just so happy that the surgery was over.

Andy's parents left shortly after that and Andy and I just settled down to stare at our child sleeping peacefully.... well, as peacefully as you can with an 8 inch incision on the back of your head/neck, a breathing tube down your throat, IV's in every limb of your body (including neck), and a foley cath up your you-know-what. He was just so beautiful.

Around 7 my dear, dear friend from Virginia arrived for a visit. Jean had just arrived in Utah to bring her son to BYU and when she walked in we both just started crying. It was so great to see her, and Matt (her son). He had left on his mission right before we moved back to Utah, and it was so wonderful to chat and catch-up with them. They were our family out east and I love them dearly. Magnus was a little bit like her surrogate grandson, since her grandbabies lived far away. She used to babysit him and take care of him at church when I was teaching primary.

After our visitors had to go, Andy and I packed up and said goodbye to Magnus for the night. We had to run home and shower (we had been wearing the same clothes for going on 36.... 37.... 38 hours?) and pack up for our stay at the hospital, then we would be back. As we walked out of the hospital around 10 PM, we lamented how incredibly weird it was that we had only arrived 24 hours before, completely oblivious that our life was about to change forever. How had it only been one day?! It had been the longest day of my entire life. I was relieved that it was finally over.

4 comments:

Amber Kei said...

Wow! Such a long day. Even reading it and feeling pieces of your emotion I can only imagine what you were truly feeling. You and Andy are such great parents. I'm so grateful Magnus has such awesome parents. Love you all!

Carolyn said...

I am so sad there are no comments on here. I know people are praying for you and thinking of you. I sure am.

life with the wigingtons said...

Hi, Sarah. I'm a friend of Tara Olsen, and she told me about your blog. We have a a little ependymoma survivor ourselves, and your experience is definitely taking me back. I am weeping and feeling this with you, and I am rooting for your whole family. Just know that you and Andy really can do this. So can Magnus. So can all your sweet kids. May God bless your family and hold you in his hands as you take one hour at a time (because can you think a whole day at a time yet? If you can, I'm amazed.) Hang in there, and know that there's someone you don't even know with a tender spot for kids who go through this and certainly for their mamas, who also prays for your son.
Sara Wigington

Rachel H said...

You have a beautiful way with words, Sare-bear. Magnus and your fam is constantly in my thoughts and prayers. I am amazed by your strength, I can't believe it's been 12 days already, and at the same time, it seems like it was only a day or two ago that I driving up to the hospital with your kids that Sunday. We love you guys and can't wait to have Magnus come home.