Tuesday, May 13, 2014

I remember...

On this day last year, I had my mother and Ann over for a Mother's Day brunch and then hopped an afternoon ferry with Tess and Charlie in order to get to Boston for Tess's surgery the next morning.

A whole year has passed and yet in so many ways, it still feels like yesterday.

I can vividly remember getting up early on Monday morning and Charlie and I giving her what would be her last real bath for the next six weeks. I remember walking to the hospital from the hotel down the street and registering her for surgery. I remember the nurses prepping her in the OR pre-surgery waiting area and the doctors and anesthesiologists coming in to discuss what would happen during the surgery and making sure all of our questions were answered. I remember giving her one last kiss and a, "Mama loves you." and then watching them take her away. I remember that they let her take her favorite blanket and baby tad in with her. I remember feeling like I couldn't breathe very well.

I remember thinking that I might never see her alive again. I remember praying. Hard. I remember leaving the hospital with Charlie to go wait out the bulk of the next eight hours at the hotel even though it felt SO WRONG to be leaving Tess there without us. I remember laying on the bed in the hotel room and watching movies on the pay per view channel to try not to think about why we were really there and why Tess wasn't.

I remember dreading having to answer my ringing cell phone two hours later when I saw the hospital's number on the caller id. What if it was bad news? It wasn't. Just the preplanned check in to keep us informed on how she was doing. They would be calling every two hours until she was out of surgery.

I remember getting ready after what seemed like an eternity, to go back to the hospital to see her in the ICU. I remember being so scared and worried about how I would handle seeing her so fragile looking? I remember feeling guilty that we had left her feeling good, and knowing that the next time she would see us, she would be feeling terrible due to the decisions we had made for her that she had no say in. I remember saying to myself over and over, "God, please help me be strong.", until it became a mantra I would silently chant whenever I started to feel completely overwhelmed. Which was often.

I remember finally getting called into her ICU room and being just so relieved to see her even if she did look so pitiful. I just wanted to touch her. Talk to her. I wanted her to know we were there and were going to take care of her.

I remember learning from the awesome nurses how to take care of Tess, who was in knee immobilizers, a wedge, and an ankle cast on her left foot and would be for the next six weeks. I remember being so worried that when she did finally wake up, she looked brain damaged. She didn't look like my Tess at all. I remember getting scared enough about it that I finally asked someone why her eyes were rolled up to the very top of their sockets whenever they were open and being told, "It's the drugs". I remember wanting her off those drugs. Pronto.

I remember being worried about her breathing and being assured that it was a normal post op reaction as well as a reaction to all of the pain meds she was on. I remember insisting on a chest xray to rule out pneumonia. I remember that it was taking her longer than they thought to be well enough to be discharged. I remember them talking to me about sending her to a rehab facility which I vehemently refused. We would take care of her at home, thankyouverymuch.

I remember trying to get her in the car to get home and being so exhausted when we finally got here that I could barely think straight.

I remember that within about three days after being home, Tess seemed to be getting very sick and Sheila came to spend the weekend because Charlie had to leave to go attend a family event on the mainland. I remember Sheila being up all night trying to help Tess breathe by suctioning her and giving her oxygen and that by the next afternoon my living room was full of EMT's and we were loading Tess up in the ambulance to go to the hospital. I remember being there for about two days when all hell broke loose, then talking to the pediatrician about whether or not I needed to get Charlie Blake and Ellie to the hospital "just in case" and his response that if I could get Charlie there then I probably should, and the next thing I knew, I was calling my dad at ten o'clock at night crying and telling him he had to get Charlie over to the mainland because Tess was being transported to Portland and I couldn't go in the ambulance with her. I remember the second Charlie came thru the Special Care doors and the instant relief I felt when I saw him. I remember meeting the intensive care team that drove up from Portland to get Tess and discussions of intubation and a medically induced coma being a very real possibility. I remember discussing with the doctor that fact that Tess did not have a DNR signed and that no matter what happened between Rockland and Portland, they were not to stop working on her if the worst should happen.

I remember leaning over her stretcher, trying so hard not to cry in front of her, and telling her once again how much I loved her and that even though I knew she was very tired, she needed to be strong and keep fighting. I remember worrying that I wasn't strong enough to handle it if anything should happen.

I remember driving in the dark, at two o'clock in the morning, knowing that Tess was somewhere up ahead of us literally fighting for her life. I remember trying not to think the worst and constantly thinking it anyway.

I remember nearly every minute of the eight days she spent in Portland trying to recover from that post- op pneumonia. There were some very scary moments, but also, some really funny ones. I remember bringing her back home and praying so hard that the worst was behind us.

I remember how long it took for her to get better from both the pneumonia and the bilateral hip surgery and tendon lengthening. The massive amount of pain she was in. How she would cry almost every twenty minutes, all day and all night for months. I remember thinking I was going to lose my mind.

I remember the guilt. Good Lord, the guilt. With every anguished cry from Tess, the guilt would squeeze my heart and make it hard to breathe. The "what ifs" nearly drove me mad. The second guessing and the regret of making the decisions we had for her were eating away at me.

I remember going into her pediatrician's office and bursting into tears from sheer exhaustion and frustration at not knowing how to help Tess feel better. I remember all the times we were told, "This is a year long recovery. She will not feel good for at least six months, and not like herself, for nearly a year". I remember not believing them when they told me that prior to the surgery and having to come to grips with the hard reality after the surgery.

I remember being so scared because Tess's lungs seemed to have gotten very damaged from the surgery and pneumonia. I remember being up at night, often, with alarms blaring and oxygen concentrators whirring trying to get her to just be okay. I remember Special Care stays at Christmas and New Years all the while knowing we had to get her healthy enough to take on her upcoming Make a Wish trip to Ohio. I remember feeling terrified to take her far away from the doctors who knew her when she was getting sick so often. I remember thinking that it was the most stressful Make a Wish trip to ever be taken.

Well, I have to say, that at around the ninth month marker post surgery, Tess turned a good corner. Her pain was gone. At least most days. We got her on breathing treatments that seem to be really helping to strengthen her lungs. She hasn't been hospitalized in over four months. That's huge! Apart from having her leg recently broken during physical therapy, Tess has been feeling good. Happy. Giggly. Excited to have her new BFF, Oreo. I guess that whole "year long recovery" talk wasn't just them being overly dramatic after all. Silly me.

At any rate, it is such a relief to see her like this. And I am so grateful that last year is over and even more grateful that I didn't have any idea going into it how truly awful it would be.

I've said it before, and I'll say it again...sometimes ignorance really is bliss.