Monday, September 30, 2013

Homeward Bound

I slept on the windowseat couch last night and when I woke up this morning, I listened to the nurses give Brenna medicine and I looked out the window. The moon was a small crescent and looked exactly like a Cheshire Cat smile. I felt like it was a little "God Wink" echoing the lyrics of Sara Groves, "It's Gonna Be Alright".

We have noticed a huge leap in Brenna's speech in the past 24 hours. There aren't the long pauses and hesitations that we have become accustomed to. Somehow, this surgery, or the medication she has received afterwards, has affected her speech. My sister made the comment that she couldn't believe she was really talking to Brenna. Maybe part of this is due to us seeing her in such terrible shape in PICU and now seeing her healthy and happy, ready to go home, but I think there is more to it than that.

I feel nervous to take her home. I don't want to move her incorrectly or cause her extra discomfort and want to do everything exactly right. She is so eager to move, get dressed and get out of here. However, I am going to miss several aspects of the hospital. The nurses are so kind and positive here-- maybe some of it is a "fake it till you feel it", but if so, that works for me. When we take Brenna out in her wheelchair, no one stares or makes a comment. I thought I had outgrown the whole stare anxiety years ago when she had some unique behaviors as a toddler, but I find myself just wanting her to feel comfortable in public and not conspicuous. It feels safe and insulated here, with a predictable routine and a lovely red button I can push when I am in a panic and don't know what to do for her.

There aren't any call buttons at home, but there are some knowledgeable friends who are willing to help us and stop in those first few days. So, we are taking a deep breath, eating our Cheerios, and packing up to come home. We'll see you soon.

Sunday, September 29, 2013

Solid Foods and a Goal

The doctor came in at 7 this morning and said that the incision looks excellent and that she is healing nicely. I asked him when she might be able to go home and he said that tomorrow would be a reasonable goal. Part of me is so excited to take her home and part of me is nervous. She has had great care here and I am hoping we can match that care at home.  After the doctor left the room, Daddy asked her if she heard where the doctor said that she could go. "The zoo?" she asked. She is such a zoo nut.

Brenna ate her first cracker since surgery today. She visited the garden and her physical therapist helped her out of the wheelchair so that she could walk along the paths. Brenna did really well. She is not requiring much pain medication right now, despite her activity level.

Right now she is watching "Because of Winn Dixie" and happily resting in bed. She has been awake all morning long without a nap and talking up a storm. She is very excited that her cousins got a new puppy and has been talking about that quite a bit.

Ms. LeMoine and her girls are headed our way this afternoon and Brenna is excited to see them. She plans to show off her physical therapy skills during their visit. We'll have to see if we can get her to stand up straight, without slouching her shoulders. It still throws her to be so much taller and to see  everyone else from a higher perspective.

Her french toast just arrived and she is nibbling away. Hopefully she will reach her goals today :o)

Saturday, September 28, 2013


Our morning began with Brenna taking her oral meds without any nausea, followed by her "wing and a prayer" IV coming out. It had begun to leak and was probably a bit precarious because of its location and the constant need to roll her side to side each two hours. I felt sick to my stomach when the nurse checked and verified it was leaking, about a minute later it slid out. We probably had close to 200 people or more praying over this tiny IV. You might find it interesting that it dislodged just moments after she finished her last IV antibiotic, which she now no longer needs since her drains are out. I sincerely believe God allowed it to continue working in that tiny vein for every moment it was needed and then let the angel holding it in let go of it since his arm was falling asleep. God knew she would start drinking for us today, the doctors would figure out the problematic medicine the night before and that we wouldn't have to go through the trauma of an EJ.

Greg had a long run scheduled for today for his marathon training and went ahead and headed out to Forest Park for his run.  Shortly after he left, the physical therapist came in and helped me walk Brenna to the nurse's station before situating her in her wheelchair, where she needed to stay sitting up for an hour and a half. This felt  intimidating to me because I have relied pretty heavily on Greg for her therapy time. She looks so unsteady in the chair, like she could topple forward, but the therapist assures me that her foot placement won't allow that to happen. So, we took a deep breath and headed up to the garden. While there, we saw Candace, Carson's mom, wheeling him through the garden also. Brenna initiated conversation with Candace, telling her that her birthday was coming soon. Candace was surprised by the change in Brenna within 24 hours. Her little Carson, Brenna's PICU roommate, is doing really well and gets to leave to go back to Kansas tonight. They were so excited to be leaving and I am so happy for Carson that he will get to wake up in his bed tomorrow morning. Candace gave me her e-mail and I am excited to stay in touch with her. There is something that bonds you to another parent going through something so similar with their child.

Brenna was pale when we put her back in bed, after her therapy session had ended. As we laid her down, she asked, "Go on walk?". She wasn't ready to quit. She knows she has to get stronger to go home and she is working so hard at doing her therapy.

Tony and Jennifer came to visit us and it was so good to see faces from home. We haven't seen friends and family for a few days and it made the evening go by so quickly. Brenna was really excited to see them and was happy to have company. She twirled her hair and joined in the conversation a few times-- I felt like we were seeing the old Brenna again.

After the Reeleys left, Greg and I sat near Brenna's bed, talking and checking e-mail. Out of the blue Brenna stated, "I'm so glad Dr. Lenke fixed my back." I was amazed to hear her say this. I didn't know if she would say this 6 weeks from now or even a year from now. It was hard to put her through something so excruciating when it wasn't her choice, but Greg's and my judgement for her best interest. Part of me wondered if she would ever resent me for this, if she would hold the pain or the long incision scar against me. Part of me hoped she just wouldn't remember this week in the hospital, as is the experience of so many spinal patients.

I don't pretend to think that we have cleared every hurdle and are on a straight and clear road to recovery. I am sure there will still be plateaus and even set backs, but today gave us hope. And to be quite honest, we were needing a little bit of that.

Friday, September 27, 2013

Setbacks & Progress

Today started out so well, with Brenna sleeping soundly through most of the night and taking oral medicine, but by late morning the day had turned a different direction. Brenna had oral pain medication last night and tolerated it, but when she received another dose in the morning, it was followed shortly after by vomiting. She wasn't able to absorb all of the pain medication and when Greg stepped out later to switch the laundry on the 5th floor, she began to thrash in her bed and attempt to roll over.

Right now it is imperative that her spine remains straight and I had flat out panic when she began to yell and thrash. As far as we are concerned, we haven't come this far to have the wheels fall off now. Brenna's voice didn't sound at all like her and she was insisting she needed to get up to use the bathroom, despite the foley catheter still in place. I had put down her side rail earlier to hold the bucket for her and now couldn't reach across the bed to pull it back up. Asking her to relax and lay flat, I tried to partially lay across her to keep her from getting up and reached for the call button. She knocked the bucket from the edge of her bed and began to slide her leg off the bed towards the floor. Two nurses immediately came into the room to assist and supported her with pillows into a more stable position instead of the one she had tried to roll to.

It felt like too much and it felt too hard and I hung my head over the side of her bed railing and cried. Tim, with PT, came in for her scheduled noon therapy. "Well, I think we should hold off on therapy until later. We need to get pain and nausea under control and then take it from there. I'm not worried about her. She wants to do this and I know she will do this as soon as she feels good enough." He clapped my shoulder, "Hang in there, mama." 

I nodded, laid my head back on the rail and kept crying. It felt good to let it out and it felt good to be surrounded by nurses and PTs who weren't bothered by my emotions. I didn't want the new student nurse with pitying, clucking sounds anywhere near me. I wanted the no-nonsense, tough smiling nurses who have seen it all and know that it gets better.

Because it has to get better. It really does. The panic of not being able to care for her on my own at home has to be put aside, because as Greg reminds me, she is going to continue to get better and she won't be at this plateau a week from now. She is so ready to get better and when we clear the tummy hurdle, we all have the sense that she is going to take off.

A few hours later, pain management in check, she sat up in the wheelchair for an hour and Greg wheeled her down to the garden. I was still wimping out and hiding with a cappucino in the cafeteria when he texted me about her progress. Greg would make a great nurse, but I don't think I would last a day. She smiled when we pulled up Sam and Emily on the laptop screen for a Google Hangout and smiled again when she listened to Grandma and then Jennifer on the phone. So we begin late morning with a bang and wrap up our day with a quieter, more comfortable Brenna in her bed. I believe tomorrow will be the day of improvement :o)

Still trying to feel better

Brenna has shown us a side of her these past few days that we have never seen before. She is intensely determined to get better and has been very tolerant of the endless pokes and prodding that she wakes up to and then continues throughout the day.

I went downstairs this morning just to stretch my legs and get a new security badge. It shocked me to see the date: September 27th. I can't believe we have been here since the 24th. It feels like one long day in the hospital. When I have visited the 8th floor garden, I have on jeans and a sweatshirt, only to find that outside it's in the 80's. It just gives a reminder and awareness that there is a whole world going on outside the hospital, but it feels very far away.

I am usually a news junkie and love hearing the morning news, but our stay here has bred an ambivalence. I couldn't care less if the government shuts down or if the ISBHE gets its act together with class ratios and IEPs. All I care about is seeing Brenna up and walking again and able to act like herself.

The sound of the helicopter is a frequent soundtrack here and I wonder if Daniel, our IV hero, is on board, flying overhead.

All is well with Sam and Emily back in Charleston, so for now, we can just focus on the here and now: the moment by moment, the afternoon naps while she is napping, the surprise of seeing that the sky is dark already and not knowing where the day went.

And Brenna is still sick. She doesn't complain, just continues to try.

"We are hard pressed on every side, but not crushed; perplexed, but not in despair;"
2 Corinthians 4:8

Thursday, September 26, 2013

PICU and the 10th Floor

Staying at the Children's Hospital has been like entering another world. Instead of "Where is the best restaurant in town?" , it's "The hot showers are on the 5th floor". When someone asked our PICU nurse if she was busy, she nonchalantly replied, "I'm holding an arterial line here. I'll be out in a minute." When we didn't have a scrunchy or rubber band to pull back Brenna's hair before surgery, the nurse efficiently snipped the ends off of two blue gloves and handed me the rubber band ends to do her hair. The messy pigtails we put in stayed in for two days and the nurses would ooh and aah over her hair and tell her how cute she was.

I always thought that if my child was very sick, I would be calm and collected. Instead, when I saw her lying in PICU with her face gray and trying to cry and unable to, I felt like I might throw up and pass out. I couldn't even hold her hand for more than 5 minutes. I had to ask Greg and my sister to take turns holding her hand for me. I wasn't the mom I thought I was and that was ok.

I didn't care if my hair was brushed or makeup was on. I really didn't care that I hadn't brushed my teeth in 24 hours or that I had slept in my clothes. I didn't care if the trash company got paid by the end of the month with online bill pay or if I spilled antibacterial hand foam on the floor. I didn't care if I cried in front of strangers in the lobby on my cell phone or if my conversation annoyed them. There was something bigger going on.

The sound of crying babies isn't annoying here. Hearing a child get sassy with their mom is the welcome sound of someone finally getting better. The crunching sound of Brenna with her ice chips is music to my ears.

The drains and lines aren't scarey anymore; what's scarier is the fear that the IV in her foot will give out.

I woke up with the knot in my stomach this morning, took a long look at her and immediately relaxed. We weren't in PICU anymore. She was on the 10th floor. She was comfortable, her cheeks were pink again and the surgery was over. It's going to get better.

Friday, September 20, 2013

Sedatives and Denial

Brenna had appointments scheduled in St. Louis over the course of two days, so we opted to spend the night. The testing on Day 1 was pretty basic. They checked her lung capacity, listened to her heart and had us speak with the anesthesiologist. Day 2 was lab work, MRI and CT Scan.

While at the hospital, I attempted to talk to Brenna about her upcoming surgery. We hadn't given her a specific date, but as we met with doctor after doctor, each confirming her surgery for next Tuesday, I felt like we needed to talk about it.

"Brenna, they are going to fix your back next Tuesday. They are going to make it straight so that you can stand up tall. You'll be taller than Mommy! There will be therapy dogs at the hospital and Daddy and I will be with you the whole time."

She paused for a second. "No. I have library on Tuesday." Each time I tried to talk about next week, she stopped me to reiterate that she was not available to hang out in St. Louis. After all, her sixth grade class has library on Tuesdays. I haven't begun to break the news to her that she will be home recovering for six weeks.

Denial is a helpful place to live sometimes. It helps one to cope and stay in the moment, not letting fear of the future press in. I don't think there is any way to truly prepare her (or us) for what is ahead. I can hear the talk of PICU, a vent, multiple lines and tubes, but until I see it--- I will have a small, insulating cover of denial to tuck in around me, keeping me warm and allowing me to continue parenting and being of some use at home to my family. I know the cover will wear thin and have holes blasted into it on Tuesday, but until then, it's useful.

As Brenna cried and fretted, a nurse stayed with her almost constantly. At one point she turned to Brenna, "I'm scared, hold my hands and help me feel better." Brenna clasped her hands and the nurse turned them over, to check her veins. A few minutes and one dose of Versa later, Brenna had an IV in and all of the necessary labs taken care of.

Three hours later, I sat on the edge of her bed, waiting for her to wake up in recovery. A father walked past our curtain, holding a preschooler in his arms. Her wispy curls were whipped into a bedhead tower and she was limp on his arm and shoulder as he walked out. Sitting quietly, Greg and I just listened to the conversations around us.
"Oh, no! Roxie forgot her feather again!"
"You're kidding. Not again! She was so excited about it, too."
"She still has treatment upstairs, I'll take it up to her" and then a tiny woman scurried past us, holding a peacock feather taller than she was.

Brenna's mouth hung slightly open and she made a snoring sound. It reminded me of visiting my grandmother in the nursing home. In that moment, to me she looked fragile and precious. I still saw her as my preschooler with a head full of curls, not an anxiety ridden 12 year old who had rolled her hair into dreadlocks in front. I felt grateful that she was having this surgery at 12, when she could be treated at the Children's Hospital, instead of having the surgery as an adult, at another place where perhaps no one cared if you had left your feather behind.

To me, she is still little. And perhaps that in itself is denial. But again, denial can be a pretty nice place to live.

Friday, September 13, 2013

He's Got This

On Thursday, I dropped the children off at school with a big wave and smile. "Have a great day! Have fun at Girls on the Run! Don't forget your binder..." sounding so normal, so predictable, so ordinary. Then I came home, leaned over the kitchen counter and sobbed. The dog looked at me, sighed as if to say "Here we go again" and climbed into the bay window, waiting for Greg, who does not sob in the kitchen, to come home from work in 8 hours.

I felt overwhelmed: surgery was two weeks away, the dryer was broken, the bathroom wastebasket smelled like poop and Sam's favorite shirt had a stain. For five minutes I let it all out: the fear of surgery and complications, the fact that it was rainy and the clothes would not dry on the line, the lament that there forever is a poop smell in at least one room of my house, and that the shirt was going to have to go into the trash.

Having reached a numb point of acceptance of all of these things, I checked Facebook, only to find a message from the pastor of our "home away from home" church. He just wanted me to know that his family was aware of the date for Brenna's surgery and that they were praying. Seeing that made all of the difference. He had never sent me a message on Facebook before and when I looked at the timestamp, it was sent at the exact moment I began my sobbing lament over the toast crumbs on the kitchen counter.

I have seen God show up in the most obvious and amazing ways in the past two weeks, through checks in the mail, to the van window opening and closing again, learning that Brenna can be sedated for the most traumatic parts of her testing and having the surgery date move up from February to September.

Seeing the message on Facebook was like hearing Him whisper, "Hey. I said I've got this and I meant it."

The dryer still isn't fixed. I bleached out the bathroom wastebasket and for at least a few hours, my home will not smell like poop. Sam's shirt is still a lost cause. But I have peace. And He's got this.