Penthouse Suite, Communication and a Good Night Kiss

As would become our custom while my mom was here, I again went in as early as I could while still getting a decent amount of sleep, and she would give Elliot a chance to be in his own environment before having to go to the hospital. I really wanted Elliot to be there as little as he HAD to be, but also spend some time with me, his Mama, and see his Papa though as of yet he hadn't. 

  The ICU rules said 12, even immediate family, for both the visiting child's health and the patients.  If something were to happen and the patient need resuscitation or emergent help it would be easier if there weren't children under foot and having to deal with a scary situation. The ICU is also home to a lot of "super bugs" and it made sense not to expose the little guys to that.

As we hung out in Brian's room, him mostly asleep, I caught up on email and facebook, the messages continued to pour in, and I relished reading every one. In the first few days I quickly realized it would be impossible for me to personally reply to every message or email, which I still wish I could have.  They really meant so. much. 

Brian was responding a lot more and even communicating though his voice was still really quiet and whisper like. Our sister Rachel stopped by meeting Grandma Gwen who was watching her boy Henry and we showed Brian a picture of himself- we were unable to procure a mirror that would reach his face since the collar prevented him too much movement. He grimaced to see himself, and I again explained what had happened and his injuries.

My aunt Karen came and visited until Elliot got there with Nana, Grandma, Lana and Henry.  She then took him for the day with plans for him to come back that evening with other friends. He did a lot of car hopping as well as people hopping! Praising God for Elliot's patience through everything! 

We spent another day camped out in the waiting room, relinquishing the private room for another family.  It was strange to think about other families who had been there for days watching US be the newbies and hear all the news, the doctors coming in and shutting the doors to have a conference and the faces emerging, drawn and resigned. Having worked there, I recognized the bereavement package the family emerged with. It was so hard to watch them walk past us to the elevator, their shoulders slumped, pain tangible. At the time, I don't think I realized how close we had come to getting the green booklet ourselves. 

The trauma doctors came by on their daily rounds and dangled the possibility of transferring to the floor and out of the Intensive Care Unit. They were concerned where to send him because the floor that usually takes head/neck/spine traumas was the seventh floor, Brian's home floor.  His coworkers would be taking care of him, and they wanted to respect Brian's privacy and make sure he was comfortable with that. I asked him several time, rephrasing several times to make sure he understood and every time he said he would go there. I agreed, they're the best at what they do, and I would rather go to a floor that knows best how to care for Brian's injuries than to a different floor for privacy. I assured Brian I would be his CNA and that it would just be Nursing care he would get there. I wouldn't want MY coworkers helping me bathe! 

 Brian worked with OT- standing up, even- and asked me to help him brush his teeth. I had been pretty vigilant with the teeth brushing, being a bit of a fanatic myself, but it was good for Brian to take the initiative. Before we were married I had made Brian promise if I were ever in a wreck or a position where I couldn't do it myself that he would come brush my teeth and wash my hair. He said he would, and I agreed to marry him. And repaid the promise. 

That afternoon, when spending time with Trenton and his Mum, Brian was trying very hard to get something across.  He finally rubbed his stomach and got eat out with his voice. They rang the nurse and he got to "eat" an ice chip and try a drink of water. Both made him cough and cough, and the nurse surmised he wasn't QUITE ready to eat real food or even be evaluated by speech therapy. I think the concern was a combination of having been asleep for five days, and intubated, his throat may have "forgotten" how to swallow, and on the other side of the coin, that it's impossible to know if that part of his brain was injured in the fall: maybe he didn't know how to swallow any more.

As we were waiting in the lobby, one of the social workers I knew from my employment walked by and stopped to check in on us. She explained that she thought all employees automatically qualified for short and long term disability after the hospital merger, instead of having to opt in like before. I had wondered how I would find out if Brian had checked that box on the benefit form last November.  Stacy promised to look into it and get back to us... and it was so!  I could only sigh with relief! God was so good!  She could find that out because she had the same benefits, and Brian worked there, again, I was so thankful we were at Southwest, and that it was automatic!  It wasn't his whole salary, but it was something. I couldn't even imagine how the bills would pile up and I knew I would be willing to go back to work if I needed to, but hadn't even thought that far ahead.

After we were all sure Brian understood what we were asking and what he was saying, we got the okay to move up the 7th floor and the best view in the world.  Marisyl was there again, and she got everything ready for the transfer, but we waited for a bed to open up and didn't actually end up transferring until late in the afternoon. She didn't mind, since Brian was doing so well and she'd been there now four days in a row.  Before we left, she inserted a nasogastric feeding tube, going into his nose and down to his stomach to give him some nutrition. His last real meal had been Friday night, since we were going out for breakfast, and it was now Thursday.  No wonder he was so hungry! He had also lost quite a bit of weight, down to 120 and they were worried about his recovery if he couldn't regain it by eating regular foods. 

   Some of my ex-coworkers had been floated to help transport patients and it was crazy to see them after almost a year off, and they were so sweet in helping scoot Brian over to the seventh floor bed and carry buckets of stuff upstairs.

Where we were met graciously and taken the best care of. We got the room with the best view, and here's the best thing: We were shed of the volunteer wardens and Elliot could go into the room.

 As soon as he was settled and everything in place, I went to the waiting room and got Elliot from my Mom, and we three went back. 

 "Look, Elliot," I said. "Papa has owie. Poor Papa, has an owie!"

 Elliot signed "pain" and then "pain" again with "more," seeming to understand his Papa had a really bad owie, and more than I thought he would. Brian tried to reach out and pet him, and his mouth worked to get the words out  

"Hey, Buddy."  

 I hadn't thought to worry if Brian would know Elliot or not. 

Of course he would. But when Brian did know him, relief filled my every pore. Thank you, thank you, thank you, Jesus.

We tried to keep the number of people in his room to a minimum, and our nephews, Ethan and Espen, were pretty pumped to be able to go finally see one of their favorite people, thought disappointed to find the waiting room to look almost exactly the same. They were really intrigued with the staples on Brian's head, a little apprehensive but also curious. 

We spent the evening taking turns going back and forth visiting Brian and finally packing up the waiting room. There were bags of food, Elliot's stroller, diaper bag and car seat which got a lot of mileage being brought from car to hospital to different car to hospital and back to my car. We had our little laptop, our big camera, my backpack of snacks and guestbook, paperwork that seemed to grow daily- Brian's leave of absence paper work and checks I hadn't deposited. We would pack it all up and make a mass exodus to the cars, usually myself, my mom, Elliot, Mum and Dad Wilson and Lana, with a few stragglers. 

That night I went back alone to say good night, and told Brian I was going to bring Elliot home for the night, and he nodded, saying, "Have a good night." and then.

He puckered right up. 

It was the sweetest kiss I have ever had. Even the first one, on our wedding day couldn't compare. It went from my lips straight to my heart and settled there, making it swell and swell till I felt I would burst with its wonder. 

As we walked to our cars, the air was balmy and warm, Elliot was solid and sweet in my arms, my Mom was there and the sweetest in laws a girl could have, and the magic of my first kiss in a week still lingered.  My heart felt so light and happy, I let out a woop.

And it felt so good, I did it again, and me and Elliot and my Mama went wooping with happiness, twirling with joy like crazy people in the warm evening. 

I was so happy. 

God is so good! He had already done so much! I couldn't wait to see what He would do next.

Every evening when I got home, I would get the mail, sort out the piles, cards, junk, bills, carefully recording people's gifts and recapping the day for Brian, when he wakes up. I usually put some laundry going, and tried to tidy things up a little bit. I would have a little snack, lay Elliot down and drag myself to bed around eleven. 

Thinking back, I see that was all I could manage. It didn't feel hard, but I couldn't do anything but go straight to the hospital and come straight home. Anything else made me feel panicky- what if I missed something with Brian? And I was on autopilot a lot of the time, doing what I needed to and little else. They were sorting through my sweet sweet great grand parents house and I so badly wanted to go there, to see it, to help, pick out a treasure to remember them by for myself, but every day I would tell myself: I could go on my way to the hospital, but the next morning the need to get to the hospital and see Brian was too great and I could only go straight to the hospital and see him. 

 

Alive in Christ, Breathing Alone, and a White King Tut

Wednesday morning, May 8,  I woke up with a smile on my face.

For one thing, we had been pretty much been guaranteed that Brian would be taken off the ventilator which was an exhilarating thought.

For another: My mom was already in the air, winging her way west to us.  

I remember after I had Elliot, exhausted emotionally and reeling from an especially hard delivery, I would tell myself, Everything is going to be okay when Mom gets here. If I can just hold things together till she gets here, everything will be fine. And it was. She was as in love with our little newborn as we were, and she made breakfast, lunch and dinners, would bathe Elliot and dress him while whispering sweet nothings in his ears while I tackled the momentous task of simply showering.

It was different this time, I wanted her there, more for Elliot's sake and with that my peace of mind, knowing his Nana would be there with him, taking him on walks and reading books and doing baby sign. If there is anyone in this world I would defer Elliot's care to it would be her.  But I felt okay emotionally, and wondered if I would collapse on her, even if I felt okay.

The night before we had a bit of trouble finding someone to stay with Brian. I wanted to make sure they didn't need to restrain him and I was willing to find people to stay over, however, we had a 2 hour window between 6 and 8am  that was uncovered. Including the ventilator-which he SHOULD NOT pull out, he also had a central line- leading to the vein near his heart- another IV site, a foley catheter and neck collar. A determined patient can do a lot of damage in a short time! Brian's good friend Brandon came in "on his way" to work and sat with him. 

I drove in to the hospital early, as Gwen and Lana had Elliot, wanting to be there when the Trauma Doctors rounded and, if possible, speak on Brian's behalf to convince them to extubate. I knew it would be a long hard day if he was again, awake, and wanting the tube out.

I made it in time, and Marisyl was there again, her bright smile and musical accent a welcome sight and sound. She explained that she had turned the ventilator down to "almost nothing" and showed me how to read the numbers- it could see how much of the breathing work Brian was doing by himself and how much of the time his lungs were "riding" the vent. It was so weird to think of my young, healthy husband's body getting "lazy" and not knowing how to breathe for itself. He was doing pretty well, but still not 100%.  I talked to him, and told him about his injury as he kept touching the collar.
At first I thought he was tugging at it and after a few times of me saying (as I would to Elliot,) "No, no, Honey, don't pull on that" and him giving me the stink eye I realized he was trying to figure out why he was in a collar he was so familiar with. I explained his injuries as simply and gently as I could and told him how great he was doing and how happy we were to see his eyes.  I read to him what I had been reading that morning, changing the adverbs to fit from me to him.

Always be full of the joy in the Lord. I say it again-rejoice! Let everyone see that you are considerate in all you do, remember- the Lord is coming soon! Don't worry about anything; instead pray about everything. Tell God what you need, and Thank Him for all He has done.  Then, you will experience God's peace, which exceeds anything we can understand. His peace will guard your heart and mind as you live in Christ Jesus, and now, dearest one, one final thing.  Fix your thoughts on what is true, and honorable and right and pure and lovely and admirable. Think about things that are excellent and worthy of praise... And this same God who takes care of me will supply all your needs from his glorious riches which have been given to us  in CHRIST JESUS. Philippians 4:4-9,19

It made me teary to read "as you live in Christ Jesus" as I felt so keenly how close Brian had been to death.  God wasn't done with him on earth, and we truly are living in Christ Jesus, how else can one live? In Him, we live and move and have our being.

One thing that I found interesting about being in a coma was that Brian definitely had "sleep" and "awake" times.  There were periods of time where he was more responsive and would open his eyes readily and other times where it was almost impossible to rouse him.

Before I had been there an hour, the Respiratory Therapist came in to turn the vent down even more and measure his breathing and see how he would do before they actually extubated. The trauma docs came in shortly after and I was happy to see Cassandra Sappington, one of the PAs that I knew from before and Brian works with her husband.  She said, "Oh! I do know you!"  It made me feel better that even though Liz, who had been following us closely wasn't there it was Cassie who had an equally personal relationship with both of us.

Brian woke up when he was hollered at a few times, grudgingly going through the trial of tests normal to an assessment: "Open your eyes, Look to the Left, Look to the right, Squeeze my fingers, Push up on my hands with your feet, Can you give me a thumbs up?"

They were worried with how drowsy he still was, and I was glad Andy had sedated him so he could rest the night before. Cassie asked him if he'd like the tube out and he nodded as well as held up his one finger "yes" signal.  She expressed her concern about the depth of his breathing which was in the 600s on the vent, saying they might have to come back later in the afternoon after he'd have a chance to wake up more.

At that news, I saw a look of steely determination cross Brian's face and I saw him gathered every ounce of strength in his weakened body.  On his next breath, the numbers shot up to over twice that to a 1300.

Cassie and Dr. Dulabon laughed and they agreed they would extubate, since the patient was so determined.

It was a little disturbing and a little gross to watch the extubation, but I wanted to be there as they checked his airway and pulled the long tube from his lungs and... out! He coughed and coughed which was "good" and he continued to all day, spitting out the mucus that had collected on the tube for four days.

It was so awesome to see his beautiful face without the tube tugging on his bottom lip and the straps further distorting his already swollen cheeks. I was concerned about his lips being chapped since he's a little of a chap stick guy in regular life, not to mention in the dry hospital with his mouth being held open for days.
 

My mom and our friend Renee, who had picked her up from the airport, came straight there while I was back with Brian.  It was so wonderful to hug her and look in her eyes and I think she was glad to see I really was okay and be able to "talk" to Brian and say hello. She was so sweet to him and he was really happy to see her, in his sleepy way.


That evening, I expressed my desire to shave Brian's hair and get him all cleaned up. The cervical collar and pads had been on since Saturday and were covered in blood and sweat and spit, and I hadn't had a chance to give him a real bath. He gave me everything I would need and said he'd try to get the hair shaved before morning. I cleaned him up, even brushing his teeth and trying my hardest to get the blood out of his bangs.  Carmelle came by after work and came back to see us. While she was there she offered to help the night nurse, Jack, to maintain C-Spine precautions while I changed the sheets and while he could get to the back of Brian's hair and switch out the collar pads.  He thought that was a novel idea while we were all there, so that's what we did.

I winced as the hair came off, knowing how Brian had loved his hair longer, and remembering how I had planned to leave it when it was half shaved, thinking he'd like a say in it got shaved or not, and that he might get a kick out of the punk rocker look. But this, this had to go. there was about a two inch wide swath of hair around his whole head that had been trapped under the C-collar or missed by the OR barbers. There was a shaved circle where the first surgery had been preformed and then as the incision went at a right angle toward the neck another patch of hair was gone. It was like a very bad marriage of mohawk and monk.

And to my surprise- and contrary to Brian's earlier explanations about his oddly shaped head- he looked so HANDSOME! With his high cheekbones and the C-Collar holding his head up high he reminded me of a regal Egyptian.

His voice when he tried to talk was barely above a whisper, having a bit of a sore throat from the tube and over all weakness, but he did talk and some of it was his normal, witty remarks and it made us all giddy with delight to hear. 

Here's a list of Day Five Highlights I wrote in Brian's guestbook.

1. EXTUBATED!!
2.Waking up... slowly.
3. Spending more quality time with you
4. My mom came!
5. You sat up on the edge of the bed with Occupational Therapy!!
6.You are "figuring out" what happened though I wonder if you remember what I say.
7.You nod and shake your head "no"
8.You said, "weeeeellll" (a famous Brianism from before) after I asked if suctioning felt better
9.You mocked Carmelle saying, "Oh My" In a very derisive tone
10.you gave me quite an eyebrow raise when I asked if you knew I was your wife. In my mind, I could hear your voice saying, "Dear...!"
11.Clean DeRoyal, bath, teeth brushed, sheets changed and
12. HEAD SHAVED
13. Jesus has given me so much peace
14.I am so happy to serve you
15.I am longing for you to call me dear or
16. STOP GIVING ME THE STINK EYE!

... He has done exceeding abundantly above anything we can think or ask. xoxo

Blessings all Mine with Ten Thousand Beside

I've now gotten you through the first (and in someways worst) part of things, and I think continuing on in a chronological day by day litany might get boring. Sometimes the days dragged and not much happened for me, so if they were boring then, over a month ago, they'll still be boring now.

I'll leave out some parts and maybe just share what sticks out in my mind.


One highlight actually happened on Monday, but it seemed like another whole day and didn't notice until I was looking back in my notes. (My memory is not quite as good as I had you all thinking it was.)  Since I have it handy, I'll copy what I had written to Brian that evening.

Day 3 May 6, 2013

...It's so unreal to think my sweet sweet LOVE is unconscious in the ICU and you aren't just around the corner.  I keep wanting to talk to you, tell you and ask you things and listen to your smooth as honey voice. Really miss you, BFF.

We let you rest this afternoon, and Chandra Urban came to sing and play guitar with us... I KNEW you would love to hear that.  (She was out in the Lobby though, and I don't think you could hear where your room is.)  It was SO peaceful and refreshing. You have an AWESOME haircut, Babe, and I love you so so much. You are loved by so many and prayed for by even more. xoxo

Great is Thy faithfulness, O God my Father, There is no shadow of turning with thee.  Thou changest not, Thy compassions they fail not, as thou hast been thou forever wilt be.

Thy own dear presence to cheer and to guide; Strength for today and bright hope for tomorrow, BLESSINGS ALL MINE, WITH TEN THOUSAND BESIDE! 

Great is Thy faithfulness, morning by morning new mercies I see; all I have needed, thy hand hath provided. Great is Thy faithfulness, Lord unto me. <3

I have always loved that old Hymn and the words really resonated.  How could anyone walk such a path without His own dear presence, cheering and guiding?   Without friends and family encouraging and telling you ways He has provided strength for the day, hope for tomorrow in their lives? I can't imagine, and know that it was God alone Who gave me the courage and fortitude to keep on keeping on, doing what I needed to and what Elliot and Brian needed me to do.

I'm better friends with Chani's brother and his wife, but we're friends too. She had texted asking if she could come serenade and it was a beautiful gift. She has this full rich and beautiful voice that reach down to your toes and give you goosebumps.  We sat in the Lobby and sang one worship song after hymn, and the music really did restore my soul. There was a guy waiting to go into the ICU to see someone, he was standing near the phone you have to use if the volunteers are gone and he stayed waiting the whole time, listening.  Like I've said, people have such amazing gifts and are so creative with their giving. Thank you, Chani!

That night Brian's cousin Kirsten had written in his guestbook, "I can hear your voice singing along with us-because I know you would be." She hit the nail on the head, and I could hear him too.

The next morning I got a call from the hospital as I ate breakfast, and because of the call yesterday I answered with trepidation.  Please Lord, not another surgery. Let it be good news!

And it was.

Please come sit with Brian, who is waking up and getting wiggly.  So wiggly, in fact, they would need to restrain him if we weren't there to be with him.  I didn't want him to wake up confused and restrained so I told Marisyl we'd be there as soon as we could. We again threw things together and raced to the hospital.  

I think it was Sunday night that they had turned the sedation down.  Brian had opened his eyes and the wide open panic in them was gut wrenching. I couldn't imagine waking up, intubated and not knowing where you are or what was happening. We tried talking to him, but then it got worse. He started throwing up, and we were asked to leave while the nurse tried to get the suction turned on and get the vomit out. He hadn't really been awake after, because the other time they tried to turn the sedation down his blood pressure had jumped and they turned it back on.  But this was different! He was waking up!

Maybe he would talk to us today.

I spent most of the morning back with Brian, holding his hand and telling him where he was and that I was there. He squeezed my hand and his Mama's hand, which of course made her day- both of our days!  He would open his eyes when we talked to him and it was so exciting.  There was talk of getting the tube out, but those plans never materialized since he was still pretty sedated by 3.  The trauma docs don't like to extubate too late in the day in case things go south and they need to reinsert.
We had a lot of company that day, people stopping in on their lunch breaks or if they were in the area and some of my dear girl friends. We had family supper that night in the waiting room, chef salad, which was delicious after all the fast food and snacks we'd been eating.  (Thanks Elva!) Oh, and she even brought Gluten free Cupcakes: a true treat!

That evening, brother Matt and Liv got trapped back in Brian's room during shift change- no going in or out from 7-8pm, and when Liv came back she was all smiles. Brian was so interactive! Matt told him his feeding tube was mashed potatoes and Brian rolled his eyes.  He then "begged" them to take the ventilator out, clasping his hands and imploring them with his eyes.  I of course hurried back, hoping for something. 

When I got to his room, he was more awake and using one finger for "yes" and two for "no" communicating very emphatically that he most certainly DID want that tube out.   It was the same viking like night nurse, and she was so sweet in explaining that we should probably sedate him so he wasn't so frantic and frustrated and could rest.  If he was up all night he would be too drowsy to get the tube out the next day when the trauma doctors would round. We could convince them at that time to extubate right then and there if his lungs were clear and he was able to prove he was awake enough to remember to breathe.  Brian was so bummed to hear that, and he wouldn't even look at me (agreeing with Andy) but turned instead to his beloved big brother, again pleading with his hands  and eyes.  I'm guessing he thought I was no help and maybe Matt would knock me and Andy out and take it out himself? He's got a lot of faith in you, Matt.

I left shortly after Andy administered the Versed and Brian visibly relaxed and fell asleep.

I went home feeling down right giddy. We really were on the right track! It didn't matter what tomorrow would hold, or what had happened yesterday.  Today had been a good day, and that was enough.


Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done Philippians 4:6