A Good Day

The basics of Kenny's surgery and positive outcome are that the pituitary tumor AND cyst were removed and it seems without harm to the optic nerve or pituitary gland. There was a small portion of the tumor left on the pituitary stalk that will be closely monitored and if required some day can be removed safely with a radiation treatment. The neurosurgeon believes that the tumor was benign, but that will be confirmed in the coming days. The cyst was what was causing the fluid build up on his brain that required the VP shunt to be put in on Monday, buying him time to get to this surgery to remove the problems.

Due to some complications with the surgery, they ended up leaving Kenny on the breathing tube overnight. So this morning when I got back to the hospital, he had recently had the breathing tube removed and was coming off of all of the drugs given to him the day before. Those effects can make a person have a very foul mouth and Kenny was no exception. Many times, it's fairly comical, as it was today, but he also had a very strong attachment to me today and I seemed to be the only one he wanted there to calm him down. Waking up with a tube in your throat and not being able to ask how your surgery went was very scary for him, as it would be for anyone and it took me a few hours to calm him. Add to that not remembering large chunks of time in the last week....well, you get the idea.

I spent my day tending to his every need, happily doing many things most would rely on a nurse to help with, watching his monitors to make sure he was breathing well without the aid of oxygen so he wouldn't have to sleep with an awful mask on tonight and generally, brining him up to speed on the last week of his life. In the quiet moments when he was comfortable and resting, it was so amazing to look across the room at him sleeping peacefully and knowing that he will be walking out of Northwestern in a few days a healthy man on the road to recovery.

We spoke about looking at life much differently now and how much we appreciate just being able to see each other. We looked at pictures of our sweet Charlie and his amazing smile and we can't wait to get home to hold him tight.

Kenny is such a strong guy...he found that the typical IV painkiller makes him sick to his stomach when we were at the hospital in McHenry so he is only controlling the pain with regular old Tylenol. They really don't want him throwing up because of the trauma to his brain in the last 6 days, as you can imagine and he is willing to just take the Tylenol and an ice pack to the neck to avoid further pain. I can't imagine the pain he is in...two surgeries to the brain in 6 days and you are just taking Tylenol???!!! I can't explain how proud I am of him.

Success!!!

I'm not even sure where to begin...maybe with the end of the story. Kenny is going to be just fine, they got the tumor and I am beyond thankful.

It's been a very long day...the surgery went way longer than expected, but he's going to be just fine. I'll blog later with the details...

Thank you to everyone for all the good thoughts, wishes, prayers and offers to help us. It means the world to both of us. I need to get some sleep now...so I can be well rested to spend a wonderful day with my amazingly strong husband.

Thursday

We are officially just waiting for a bed to open up at Northwestern for Kenny to move to. The doctor that we are working with there will review Kenny's most recent MRI and CT and do any other necessary tests with him and he could have surgery as early as Friday to begin the process of removing the tumor. We need to discuss specifics with him to make sure we are comfortable with his approach, but we were before and he didn't seem to us that he is a "surgery-happy" kind of guy. I'm not sure how much time we have to make this decision (in terms of the speed of the growth of the tumor, the fluid on the brain and what else the tumor is affecting)...and that is one of the many questions that we need to work through with him once we get to Northwestern.

I spoke to the nurse at 5am and Kenny had a good night. He got lots of sleep, which is good because he's only been able to sleep about 15 minutes at a time. The nurse kicked me out to get really sleep in my bed about 1130pm and he had been sleeping well last night when I was with him. The nurse said he was up a few times and is still getting up to go to the bathroom well without dizziness and is moving really well. He has also had two meals now that have sat well with his stomach. He actually asked for Coke with dinner last night. :) She said he talked about how good I am to him and how much he loves Charlie and she was impressed with his sweet words and how with it he is. She said the confusion in dates and times and what all is going on that we see (and scares me a little), is really minor given everything he has and is going through.

Pray for a call soon from Northwestern that we can start moving down there so we can start getting answers and working on making Kenny better.

Update

Just a quick update...I went back to the hospital last night about 830pm after my Mom and I brought Charlie for a quick visit with his Daddy. Kenny LOVED to see his boy and give him a few kisses. When I got back, Kenny was in amazing spirits...more awake than he had been all day. The nurse told me that the first 24 hours is the hardest...and 830pm was just exactly 24 hours since he had been rolled out of surgery. He was more awake and talking and I just keep telling him about everyone that is calling and emailing...he knows how blessed we are to have a wonderful group of family, friends and coworkers.

It seems he will be transfered to Northwestern today to be put under the care of a doctor that we keep hearing more and more good things about. Kenny and I both feel confident that this is the right thing for him and that this doctor will help him. It's unclear right now if they will release him and then have him check back in later for surgery, or if they will keep him until he has the 2nd surgery to remove the tumor. Northwestern needs to start running a series of tests on Kenny to determine exact what the tumor is affecting right now, so that they can begin the game plan for removal. A side note...the belief is that this tumor is not cancer. 95 - 98% of pituitary tumors are not cancerous.

I will be staying on and off at Kenny's sister's house in the city. We are so lucky to have them so close to Northwestern. Once we know further how long Kenny will be there, Charlie will probably come down there with me also.



Kenny...about 10pm Tuesday night. He asked me if I had taken a picture of him that day and I said no. He wanted a picture...to show everyone...he's going to be ok.

Kenny and Charlie

My planned post was to celebrated Charlie's second month with us today. I will touch on a few moments with Charlie and then update on Kenny briefly before I head back to the hospital.

Charlie is an amazing little boy. He is so good...sleeps 8 hours each night now which is wonderful especially given the circumstances. He has just been so good for his Grammy the last few days that I have been with Kenny. And his other big accomplishment this month is his wonderful smile that he shares so often now. Happy 2 months baby Charlie...your Mommy and Daddy love you so!


This picture was taken yesterday morning, pre-surgery. Charlie and his daddy...even in the hospital he could find a comfy spot with Daddy to nap.

And here's Charlie's 2 month picture. Smiling...and you can't see it, but his shirt says "I love Daddy." And he does...I brought him to see Kenny for a few minutes in ICU today and it truly brighten Kenny's face to see Charlie and give him a few kisses and belt out a little tune for Charlie.

Kenny is doing very well for about 24 hours out of surgery. He's been resting and looking up to smile at me or say few words and then fall asleep. He should be moving out of ICU in the morning and possibly released on Friday. Our neurosurgeon here would like us downtown at a hospital early next week getting lined up for his second surgery. Northwestern is ready to take him anytime and begin running necessary tests on him to understand what they will be working with. I've spent a good part of the day on the phone getting his arraingements made to move down to Northwestern where we have been seen in the past by a doctor that we keep hearing more and more good things about. Kenny and I have talked about it and we feel good about Northwestern and hope that they can be helpful in removing the tumor.

Kenny asked me to thank everyone for their phone calls and prayers. They mean the world to both of us. I tell him about every message, email and phone call I have gotten.

My mom noticed in visiting with him today that even though he's sleeping, he wakes up and makes a very positive, funny, Kenny-like comment about something. His positive attitude is still there and we both know that he will get through this.

Sleeping Charlie

Since we brought Charlie home, he has been sleeping at night anywhere from 3 hours and longer. His sleep patterns have never really bothered me. There may have been a night or two in the beginning, but generally, I'm used to it and if I'm really that tired, I'll nap with him the next day. Last week, he solidly started sleeping 5 hours at night...and then that quickly became six hours by the weekend. I started thinking that 8 hours would definately be possible by the time I went back to work in mid September. Monday night he slept 7 hours...and last night he slept 8 hours!!! What a great kid!!! 7 weeks old and he's slept 8 hours at night...I hope he keeps this up!


This is where I laid Charlie down in his crib last night at 930pm. In the middle of the crib, a little towards the back side of it.


This is where I found Charlie at 530am this morning when he woke up after sleeping 8 hours. How did he get here??? Sometimes he wiggles around like a worm, but this is crazy!

The last week...

The last week was a little busy for us with so I thought I would do a week in review.


Since moving into this house, we've done alot of new plantings in existing landscape beds and a new one too. I've really enjoyed it and Kenny has really enjoyed it when I don't drag him into my projects! The picture above is a beautiful flowering bush we have along our walkway...actually we have several of them. I've been meaning to photograph them and I happen to catch a butterfly on one last week.

Something make me realize that all our pictures of Charlie are of him sleeping, quite and awake or smiling. So, since this is kind of my way of scrapbooking/journaling for Charlie, I thought I would take a few of him crying too. He does do that!

He really likes to get his arms and legs going sometimes while crying too!

Kenny and his dad went to a tractor/farm show in Sycamore like they do every year. I thought I would be nice and post a few of his pictures from it...I think we all know why he took this picture!!

I know these are Farmall tractors...like the one they own.

We also went to a BBQ at the Carlins. Here's Camryn and Charlie on the play mat together. At one point Camryn took Charlie's hand and put it in her mouth. He didn't like that too much!

And here's little Gwen...one of Charlie's other girl friends born in 2008.

And Charlie and Scott...and Kenny's head in the picture too!

This is from the Orphan Car Picnic. Another event we enjoy each year.

Mike and Kenny with a sign that fits them both perfectly!!!

Charlie in his crib. I realized I haven't taken many of him in there either. He's just waking up and asking to be picked up.

Happy Charlie!!!

A Little Bit of Everything

I thought I would start off with a few cute pictures of Charlie SMILING!!! These are especially for Uncle Joe and Cousin Anna...since he's wearing his Cubbie outfit!

A partial smile...they are sort of hard to catch on camera! And his scratch he gave himself on his cheek. Those finger nails of his are dangerous and impossible to keep dull so he doesn't scratch himself...but we think he's trying to look a like a little tough guy!

And there's a great smile and his sweet dimple!!

Friday, Charlie and I went to visit some friends that had a baby girl less than 24 hours after Charlie was born. Little Camryn is such a cutie and her big brother Jason is such a sweet, smart guy!

Charlie relaxing at Jason and Camryn's house.

Camryn and Charlie laying together on the floor.

Jason wanted to get in on the pictures...and maybe supervise his sister and this boy too! :)

Doesn't Charlie just look like a stud!!??


Jason and Charlie

Charlie hanging out in Jason's chair with some Matchbox cars.

Little Camryn snoozing...so sweet!

Saturday night we went to Highwood for a cruise night and met up with both sets of our parents, my brother and many friends!

Grammy and Pops with Charlie

Charlie's middle name is Edward. Here's a picture with the living Edwards he is named for...Pops (Lawrence Edward), Charlie (Charles Edward) and Uncle Ted (Edward Lawrence II).

And Sunday we went to Uncle Jim's for some YUMMY ribs!!

Charlie's first name is Charles...and here he is with the living Charles' that he is named for. Daddy (Charles Kenneth II), Grandpa (Charles William) and Baby Charlie.

Cousin Lauren, Anna and Cousin Megan enjoying the BEAUTIFUL weather we are having.

Megan and Charlie!

All in all...a great weekend!!

What to do when the baby won't nap!

Yesterday, Charlie wouldn't nap. When I say that, I mean a good nap that lasted more than 30 minutes. He was awake...wide awake. He was a little fussy from time to time...but not awful. I had told Kenny that morning that I would nap when Charlie did yesterday because I needed one. So, of course, Charlie wouldn't nap!

Here he is...sitting in "his chair." His chair plays music, white noise and vibrates. He loves his chair and usually falls asleep in it. Does it look like his sleeping?? :)

"Why does Mommy keep asking me to take a nap??? I like staring at the ceiling fan."

So, I decided to take him for his first walk through our neighborhood since it wasn't too warm yesterday. We walked and walked and every time I peaked in at him, he was wide awake. Movement ALWAYS makes him fall asleep!

Does he look like he's sleeping??

Charlie's first stroller ride in the neighborhood.

The last 10 minutes of the stroller ride, he finally fell asleep. I quietly and gently brought the stroller in the house to let him sleep. It last 10 more minutes...and then he woke up.

Finally about 8pm last night, he pooped out. He woke up about 45 minutes later to eat and then we put him to bed for the night. Kenny and I had high hopes for him sleeping a good 6 hours or so since he was lacking in naps during the day. That didn't happen, he likes to eat too much...but as you can see below...he's catching up on the naps today!

(And no Uncle Ted, that is not a dress he's in...it's a sleep sack...a safe way to "put a blanket on him" and let him sleep with out worrying about him.)

Charlie in His Car Seat

I'm almost afraid at how fast our little Charlie is growing. I call him little Charlie because I don't think I will be able to for very long! We were out to dinner and a cruise night earlier this week when I took these pictures and I realized we may have to remove the "newborn insert" in his car seat soon. Yes, he is 6 weeks old...but look at these pictures...he's almost bigger than the gray insert in his car seat.


I think he likes his doggie friend...the toy on the car seat...but this picture makes me wonder!

Little Man

I love this little man outfit that Charlie is wearing in this picture. And he blends in well on his blanket!

Cousins

We recently spent a great day at Charlie's Aunt Joan's and Uncle Joe's house visiting with them and other West cousins who were in town for a visit. It was such a great day, good conversation and fabulous food. Charlie loved meeting so many people.


Our little guy...

Baby Kate and Baby Charlie. Kate is 11 months older than Charlie.

Kate was very interested in Charlie during this visit.

Anna, Kate and Charlie trying to sit nicely for a picture for Grandma Friedrich.

AJ, Kate and Hannah.