Sunday, March 1, 2009

Good Things Come To Those Who Wait

Today, marks SIX months since the longest day of my life.

Six months since my Kenny had his pituitary tumor removed.

For the last six months, I have relived parts of that day in my mind. It just takes one word to make me think of some moment that day.

These last few weeks, it’s been hard for me not to think about those moments from the evening of August 24, 2008 – August 30, 2008. I don’t think I will ever forget them, but so our family has written history, I want to record some more of that time.

And more importantly, I want to celebrate with Kenny for all he has successfully recovered from. He is something to celebrate and be proud of.

Let me go back a few days before his tumor was removed, when he was at a local hospital.

I had been looking for a sign. Something or someone to tell me I was making good decisions, even though I wasn’t sure what I was doing. This was scary serious stuff. I’m a planner and need to have some time to plan and think to make the best decision possible. What I longed for was time to do research, to understand what we were dealing with, how bad it was or how good it was, time with the doctors at Northwestern to ask my massive lists of questions to. I needed to plan for this and there wasn’t time to plan.

I felt out of control. And I’m a girl that needs to be in control.

Family and friends tried to help me and they were helpful, but I still never felt like I had the answer I was looking for. There were a few moments that Kenny would wake up and very clearly state his wishes or his thoughts on his care. I took those moments as my signs. I was searching to do the best thing for him, but also what HE WANTED. I was convinced if I did what Kenny wanted, it would be the right thing. Those were the times that it felt good, like the medical decisions we were making were right.

One sign came several times in a few days. We were trying to figure out what hospital and doctor in Chicago to take him to for the tumor removal. The local doctor was talking about releasing him, but I just wanted to keep this moving and get him well. I was scared to go home with him and then have to go back to the hospital again. We had worked with Northwestern in the past but the local neurosurgeon was urging us to go to “his” hospital in Chicago. I didn’t feel good about that. His take on what type of surgery they would do was different than what we had always been told. Nothing seemed right about it.

It was early afternoon the day after Kenny’s shunt placement and he woke up as I was having a conversation with his nurse and he said “Call Dr. C.” He must have heard the conversation because it was about what doctor and hospital to go to next. Honestly, I didn’t even remember the Northwestern doctor’s name there was so much going on. Dr. C was the doctor we had used at Northwestern for a second opinion 1 ½ years prior when we learned of this tumor. But as soon as Kenny said his name, I knew that was right. I confirmed with him that he wanted that and he said “Yes, I liked him then. I had a good feeling from him. Call him.”

And then I realized --- I had planned for this, we did tons of research when we went to Northwestern for a second opinion so many months ago. Kenny just had to remind me.

So the nurse was sweet enough to help us by finding his number for us, so that I wouldn’t have to go home to go through our records. And started our process of getting transferred to Northwestern. In the following day or two, as we told people the plan to go to Northwestern, Dr. C’s name was confirmed by several family members doing research for us, to be an excellent surgeon --- and he is. He’s the best. Thinking about that man will always, always bring a tear to my eye.

Fast forward to the night before surgery.

He arrived at Northwestern around 7pm the evening before his surgery. I had talked to Dr. C’s assistant on the way down and then received a surprise phone call from Dr. C himself. He was waiting around to see Kenny and his MRI before he went home and we talked about some of what would happen the next day, the type of surgery and he made me feel good. Like we were in the right place. I knew the NeuroICU room Kenny was being taken to and I got there soon after him. The nurse, Kenny and I started getting settled and answering the millions of questions you must answer when you check in the hospital. And in walked Dr. C. I was amazed and touched. It was at least 8pm and he was still there. On the phone, he said he needed to leave and he’d see us in the morning. But when he walked in, he said he just really needed to see us and talk. We spoke briefly, he got some of the medical information that was sent from the other hospital and he gave some orders to the residents. He’s not a man of many words, simply there, efficiently doing his job. Kenny said something to him like “Good to see you again. Get some rest, you have a big day tomorrow.” He laughed and told him to do the same.

Kenny’s parents and sister came to visit with him that night and Kenny was quite awake through the visit and enjoyed a meal before his midnight cut off on food intake. They left, and I settled in for the night with Kenny. He had a million and one tests done that night to prep him for surgery and the nurse was kind enough to give me a blanket and pillow to nap with in the waiting area. I dosed for a few hours that night in the waiting area while Kenny had a MRI done that would be used in surgery the next day. He was scheduled for something like an 8am surgery time and I knew we would be rolling early the next morning. I woke about 4am and headed back into his room. He was sound asleep and I just watched him sleep for awhile, praying that these good feelings that I kept getting would continue through the day. When he woke, I put on my cheerleader uniform and began my pep talk, making sure he knew how loved he was, how strong he was and how much our sweet Charlie needed him. Positive thoughts were the only thoughts I was letting enter his brain that morning, so that was all he would be thinking of as he slept during surgery.

As we learned, surgeries are never on time - even when you are the first one of the day. Eventually, we went to pre-op and we sat together and looked at pictures of Charlie and talked about how good everything was going to be. The surgery was supposed to be about 4 hours, maybe 5. He was rolled in as I walked out to the 5th floor waiting area about 9am.

That started the longest day.

There are wonderful volunteers that work at the desk in the waiting area that take calls from the surgical nurses about the progress of the surgeries that day. They are like a lifeline to those waiting for their loved ones in surgery. I checked in with them and they advised me that it would be a little while before they called to say they started. I took that as my cue to head down for a big, tasty, well deserved Starbucks and some food. Amazingly, my stomach was actually asking for some food. I found Joan and our adorable nieces while getting food and loved the company and the distraction of the girls. Anna, gave me a great “get well” picture for Uncle Ken. Kate and I played – well, Kate tried to get into things and I tried to make sure she didn’t. J Kenny’s parents arrived and Joan and the girls left for lunch and nap time. News of the surgery would come out every two hours or so and all reports were that things were going well and that he was very stable in surgery.

The day dragged on with moments of me trying to read (pointless), fielding phone calls from our loving family and friends, phone calls to my mom so I knew about sweet Charlie’s day and pacing the halls at times.

By 5pm, I was going insane.

I had seen families come and go and surgeons come to talk to them all day, but where was our “Surgery is over” phone call??

The waiting room was clearing out.

Ted and Dom came to sit and wait. I thought seeing new people would calm me but it didn’t.

I realized the only thing that would calm me was Kenny.

Through all of this, all I wanted was my Kenny.

I started to make trips to the bathroom, trying not to throw up. You see, when I’m anxious or nervous, I tend to at least gag. I have a good gag reflex. I was proud that I made it that far into the day before feeling like that. As I stood in the bathroom, calming myself down, taking nice cleansing yoga breaths, I prayed that we would hear something from the OR. I just needed to know something was going well. Why was this taking SO long?? Again, this was out of my control.

As I stood there, taking my deep breaths, the phrase “Good things come to those who wait” came to me.

Well, I had sure been waiting, so good things must be coming, right??!! I added patiently to the end of that phrase and just kept repeating it to myself as I got anxious. It calmed me. I just needed to be patient.

Finally, I walked up to the sweet volunteers taking the phone calls and asked them what to do and told them I needed to know something before I went crazy. They called in for me and left a message for a nurse to call out. Minutes later, they were packing up to leave for the day and they turned the phone over to us and the three other families left waiting. They reminded us to answer it. Soon, it rang, I was called over to speak to a nurse who said “Dr. C got the tumor and he is closing up. He will be out to see you shortly.” It was well after 8pm. I screamed the news to our family and friends, which now included Joan, and cried. Thank God!

See -- Good things DO come to those who wait - patiently.

Dr. C came out to talk to us. He explained the details, why it took 12 hours, since the time I left Kenny going into surgery and I cried, tried to ask a few questions even though I wasn’t thinking clearly and hugged that man. He welcomed me into his arms.

We waited the required time and headed up to see Kenny briefly in his room. I needed to meet his night nurse, make sure she had about five phone numbers to reach me on if she needed me and thank her for caring for him. It took longer than we thought to see him and eventually, it was just Dom and I waiting to see him. I’m so glad he was there with me. Seeing the person you love, awake, but with a tube in this throat, and very scared eyes watching everything in the room, is grueling to say the least. But I needed to see Kenny that night, just for peace of mind, even if he didn’t remember it.

His eyes got huge when I walked in and he was immediately try to talk to me. I felt so bad, like I was hurting him.

I quickly told him “It’s OK. Don’t try to talk. You Are OK!”

I explained that they had to leave the breathing tube in overnight because of the length of the surgery and soon they would sedate him so he could sleep better and they would take the tube out in the morning.

As I held his hand, I explained simply that Dr. C got IT and he would be just fine.

Dom said “Keep talking to him. You are calming him down. Look at his eyes.”

Sure enough, the frantic look in his eyes was gone. Kenny was rubbing my hand and was calm. He closed his eyes. I knew he understood what I said and knew he needed to sleep. I knew he was out of it and hoped that it calmed him enough to rest and that I could repeat the wonderful news a million times the next day.

All I could think about was how scary it must have been for him to wake up with a tube in his mouth and wondering how he was and if the surgery was successful. I asked the nurse if she told him everything was fine and she said no. That was one of the only times I got frustrated with his care because even if he was coming off all the medications from surgery, somewhere in there I knew he understood and needed to know he was ok.

Dom and I left the room and then I cried. I didn’t want to confuse Kenny by seeing my tears because these tears were happy tears, the good kind.

Good things DO come to those who wait – patiently.

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