The reason the blog has been so quiet this week is because that huge thing life happened. And it rocked my world. It tailspinned me through the air, picked me up, shook me. Hard. And then slammed me up against a wall before it stole my lunch money and tore my clothes. Well, that's how it felt at the time anyways.
I try to ride the line on the blog of being just enough personal so that you know who I am as a mama and wife, friend and woman. But not so personal so that my kids one day are in therapy about their mama's blog. But I feel like Greta's health has been a part of this blog since this winter where I shared with you our discovery of a possible ongoing issue in her neck. I'm so very happy to let you all know that we are home, and she is fine. She's more than fine. She is awake and sarcastic, ornery and beautiful. And I want to document this week because it was such a large mark in the time line of my life. A mark with a big sharpie drawn on it and this is my place for that.
We have had her surgery scheduled for some time now to remove one lobe of her thyroid where the branchial cleft cyst is adhered, along with the tract that connects it to her throat. She has the least common type of cyst. My girl's always gotta be unique right? Our surgeon thought based on her last ct scan that she was at risk to suffer another infection, but with no way to predict when unless we got regular scans to see the level of fluid in the cyst. So we chose the preventative route since every infection means the scarring inside her neck increases. And one day when we do decide to remove it, the more scarring means the more difficult it is for the surgeon to do their job. Infection causes things to stick together. So a normal thyroid removal might be easy to just dissect out of the neck, but someone who has had an infection like Greta's means that everything sticks to everything. Her scheduled surgery was 3-4 hours long. It's a long 3-4 hours let me tell you.
The surgery itself went really well, but when she was coming out of anesthesia she started to have trouble breathing, so much so that our doctor took a scope down her throat and saw tremendous swelling. Because of a breathing tube that was too large for her (an error that I know anesthesiologists can make, but we never of course imagined it to happen to her) and all the manipulation during the surgery, her little throat couldn't handle it. So it swelled. They had to resedate her and intubate her. When they intubate that means they have breathing tubes coming out of their mouth and is hooked up to a ventilator, tubes in the nose as well. Kids have to be asleep because it's really uncomfortable and they will instinctively pull at the tubes. The doctors wanted her to be asleep and on steroids long enough for the swelling to go down, which meant at least 24 hours. All of this meant from the time I said goodbye to her Wednesday morning for her 8:30am operation, until Thursday at noon, my sweet Greta was asleep. They moved her into the ICU and that's the first time I got to see her. There's no way to describe what it's like to see your child laying in a bed with a ventilator breathing for them, watching the nurse talk to her as she takes her temperature and blood pressure. She talks to her because she may hear you. I'm a strong person and haven't cried in the weeks leading up to this. But kissing your baby on her forehead and whispering in her ear that you are there next to her, holding her hand, and telling her you won't leave her side, that will bring tears. They began to flow, but they haven't stopped yet.
I had a constant battle going on in my mind. Logically, I know she is not sick, she is healthy and strong, and the doctors are the ones who are making sure she's asleep. None of the staff acted like she is sick. They have patients in rooms next to her who are indeed really sick. She is just a temporary resident there and they get to pick her eviction. She is not in some coma where we fear she will not wake up. And yet, holding her hand and rubbing her feet and legs when she is in that kind of deep sleep puts you in a place of fear. My anxiety was over her positions, how would I know if she was comfortable or in pain? Was she laying in one spot for two long? I must reposition her, I must switch her sides, I must I must. Do. Something. That do something part is the really really challenging part. Because there is nothing. Nothing that I can do. Time ticks at a pace that is so painful and torturous. Aaron would read to her. My sister painted her nails and toes. I would reposition her. That was kind of the job I assigned myself. My mom and dad were there through it all. They never left our side Wednesday, from the moment she went in to surgery to the moment she was awake on Thursday. I had to make them go home because only one person could sleep there.
I didn't think anything could be worse than Wednesday, and then Thursday appeared. And I was wrong. This was the day they would wean her awake from the sedative and take her tubes out. I longed for the moment of the procedure and I dreaded it. If she was not breathing well on her own the doctors had a plan of immediate steroids to use, different medications and masks, but ultimately the last resort was re-intubation. Give her another day. I couldn't do another day. Fortunately, the last resort never came. The weaning her off the meds was the worst part. Her arms were restrained the whole time but now that she was waking up she didn't understand why she had a terribly painful tube down her throat and why wasn't she able to use her hands. And why why why.
Gradually as she became more awake she could respond with a head nod or try to mouth words to me. "take it out" was the phrase she would mouth over and over and over again. All we could do was tell her as soon as she was awake enough to breath really well the doctors are going to come and remove that terrible tube. I told her as firmly as I could that she needed to do everything the doctors told her, listen to them, follow their directions because she had to make sure they didn't put that tube back. I kissed her as she nodded yes to me and I walked into the hallway with Aaron and my dad. I normally can watch but this time I just couldn't. I heard the doctors and nurses and knew that she was being amazing. She didn't scream or cry just breathed when they said breathe and coughed when they said cough and did everything like the strongest, bravest girl that I know.
I turned around and I saw her sitting up in the hospital bed with a mask on that they were having her breathe into to force some more steroids down her throat to make sure it wouldn't close. I heard her say something with the mask on and the doctors said "you need what?" and from the hallway I yelled "she needs to spit! she said she needs to spit!" That's when they let me back in the room to stand beside her and that's where I remained. I took my position back at her bedside and seeing her with her eyes open and her determined face to breathe as deeply as she possibly could was the only place I ever wanted to be. My tears dried and I found the mama that I usually am. The mama that will not let you see her anxieties and fears because what does that leave her children but with a scared mother?
We had to remain in the ICU for observation another day, but this time she was there. She was awake. She was asking me for water. And asking me what time it was. Oh, and how was it Thursday mama? It's supposed to be Wednesday! I still don't know if she understands she was asleep for 30 straight hours. I had a roommate this time who knew that her mama was there. She amazed everyone. Immediately asked them for food because she was starving. The nurses were a little thrown back by her wit and sarcasm so soon. By the way, steroids make that wit and sarcasm come out extra extra strong. They knew they had a fighter when Thursday night the night nurse and I had to get up about 843 times to tell her to stop taking all her probes and sensors off. She wasn't going anywhere. She would look at you, nod yes, promise not to take off her wires and then about 6 minutes later just as I was laying my head back down I would hear the alarms. She would look at me and her nurse and just kind of shrug her shoulders like "how'd that happen?"
She even surprised my dad, about an hour after being off the ventilator she pulled me close to her and whispered, "what's that American Girl bag in the corner?" My dad got the bag and showed it to her. She whispered (her voice was really hoarse from all the tubes still) "I know the shape of that box. I know what it has to be. Make Papa take it out of the box and put it together in front of me so that I can watch him".
And he did.
We did. We stared at her face. We held her hands. We kissed her again and again and again. She got her drain removed from the incision, we slowly had one tube detached at a time. This IV and then that one. This sensor and then the others. One by one she became more free. Free to move around the bed and then free to get off the bed. Free to walk down the hallway. And then we came home. We are home. All of us. I could write a whole other post about her brothers and how they felt this week and the troopers they have been. Maybe I will when my emotions even out a little.
Tonight I gave her a shower and washed her hair and as I was drying her off I tried to explain to her that I know a lot of people. I've met a lot of people throughout my life. And I want her to know that I have never ever met anyone as brave as she is. She told me not to say that because she didn't believe me. I told her I am not joking. I am being as serious as I can be. I told her that there are many kids who go through hard hard things, painful things, and some are brave, sure. Some braver than she is. But of all the people that I know, there is no one braver. And she asked, "not even you mama?" Not even me.
And then she proceeded to tell me that having a baby will probably be super easy for her. I laughed and told her that that's a different kind of brave. A kind of brave that is actually easier to be, and do you know what she said? She said, "I know mama, because after that you have a baby for your braveness, for me I don't have anything".
"Oh but you do Greta, you have so much. Now you know how strong you are. You know that you can do really hard things, that you aren't afraid of things you may have been afraid of in the past. Brave and strong. That is what you have now."