Relief

I have to admit, Kenny had me pretty worried yesterday...just not doing as well as I expected, even though much of it could be rationalized. But today was a great day for him. I didn't get down there until the afternoon and am now staying at Joan and Joe's again for the week (or as long as Kenny is at Northwestern). His CT showed signs of improvement and he was very alert and awake for much of the afternoon and evening. By the time I left tonight, he had started to crack jokes, which makes me believe the Kenny I love is coming back again. He continued to ask about how much longer he has to stay there which reminds me that he is motivated to go home! Now I hope that the CT tomorrow shows much more improvement so we can move quickly to his next surgery and then home again.

Recovery

Yesterday, Kenny, Charlie and I were supposed to have gone to Lake Geneva with the Packard Club for a boat ride around the lake and a nice lunch afterwards. We didn't get to go, which bummed us out because we really wanted to take Charlie there for his first boat ride. Next spring, Kenny and I have plans to take Charlie there to enjoy his first boat ride. We went last September for a boat ride there and loved it.







We were supposed to ride this boat...

And see this view of the lake...but it wasn't quite this calm yesterday.

A picture of us from last year on the ride.

And us outside the docks.

Here's what Charlie was going to wear. My Uncle Lloyd's sister Norma MADE this ADORABLE outfit for Charlie. As I put him in it for a photo shoot this morning, I realized he could wear this for Halloween, since he didn't get to for his first boat ride yesterday.

He looks a little like a "drunk on his bottle" sailor in this one!

He's so happy in the morning!

Sweet Sailor Charlie!!!

Instead of all of the Lake Geneva stuff, Charlie and I headed to Northwestern to visit Kenny. Charlie did really well, but Kenny was pretty tired, although glad to see Charlie. Because Kenny has to be flat on his back, he couldn't really do much with Charlie other than look at him. He held his hand a little and kissed him when they sat him up for lunch.

Joan came to visit Kenny and being the wonderful sister she is, she took Charlie back to her house for the afternoon to play with his cousins. He had a wonderful time and it allowed me to focus on Kenny. I realized yesterday that I can't take care of both Charlie and Kenny at the same time, at least when Kenny is in the hospital. I need to focus on Kenny, encouraging him, helping him and being his support so that he continues to make progress. I also realized it's much harder on me to see Charlie for short periods of time and then have to leave again, so I'm going to stay at Joan's again so that I can focus on Kenny. Charlie is in good hands with my mom and doesn't really realize that Kenny and I are gone. He's just happy to see us when we get back home.

Overall, the doctors are just taking it day by day with Kenny. He's doing ok, and this particular recovery is a slow process. It's a delicate balance of draining the CSF from his brain at the right speed so that it overtakes the air in his ventricles, but not too fast because that could damage the patch work they did in his nose last Thursday. As I said, Kenny's really tired and maybe it's better that he's sleeping alot right now...I know it could be his body's way of healing.

Progress

That's the picture that Kenny loves to look at of Charlie...it helps to get us both through the days that we aren't spending with him. How can that picture not make you smile??!!

Kenny's sugery on Thursday to "patch" the leak in his nose was successful in that they found the leak and were able to fix it. For it to truly be successful, he has to spend the next 5-7 days flat on his back on bed rest, giving the "patch" time to adhere to his body and form a solid barrier keeping it from leaking CSF again. This is not fun for him, as you can imagine, and he is already in a lot of pain in his lower back from just laying there. I imagine the next few days he will get through with pain killers to help the backache and sweet dreams of going home soon!

After they are satisfied it is safe for him to be more upright (hopefully about Tuesday next week), they will either replace or remove the shunt that is currently modified to drain the CSF from his brain. My hope is that we are home by the end of the week.

I feel like the days are getting harder for both of us. We had a taste of being home with Charlie and it was so sweet. We miss him more now each day and it's harder for me to stay away from Charlie. I'm torn between my two boys. I know each of them are getting wonderful care when I'm not with them...but I wish we could just all be together. And soon, I know we will all be home again, I just can't wait to get there!

I'm home now, with Charlie and am bringing him to Northwestern tomorrow to visit with Kenny. I pray he does well on this trip, so that we can stay most of the day. I know he will bring a huge smile to Kenny's face, however long we get to stay.

Tomorrow is also the day, 6 years ago that Kenny and I started dating. Since we've been married, we've still always appreciated this day too because it was truly the beginning of "us." Now we have added Charlie to "us" and I'm so thankful the three of us can spend tomorrow together, planning all the things we want to do with Charlie in the coming months.

Back to Northwestern

All weekend long, I planned to post about how CUTE Charlie is and how much we LOVE being home with him again and how WONDERFUL Kenny is doing at home. Time flew by and I never had a chance to do that.


I was going to write a great little "Thank You, Grammy" post with this picture of Charlie. His heart surely belongs to his Grammy after she took such good care of him for days and days. We love her lots and lots for that too!

This is one of those CUTE Charlie pictures I wanted to post...he is so darn cute in long pants, I can't get over it!! And thanks to Uncle Ted for these overalls!

And sleeping...so sweet.

But then it got to be Tuesday and Kenny developed a cerebrospinal fluid (CSF) leak from his nose. This is one of the complications of the surgery to remove the tumor...because the surgery was done through his nose, they "patch" it back up inside, but the area can develop a leak. It's like a leaking faucet. And Kenny's nose certainly looked like one. It started on Tuesday morning and we went to Northwestern...it stopped and they couldn't verify that it was in fact a CSF leak, so we went home. Tuesday night, it started again so we headed back downtown. Kenny was admitted Tuesday night.

The neurosurgeons decided today to correct the leak by utilizing the shunt that Kenny had placed a few weeks ago. They removed the tubing from Kenny's belly to his neck line today to externalize the tube to allow that to remove the CSF properly, rather than through his nose. This was a fairly simple procedure done in his room today.

Tomorrow, Kenny will be having an operation to try to identify the leak in his nose and "patch" it properly so as to prevent any infection. The tissues would normally just grow in this area, but the ENTs and the neurosurgeons would rather not risk the chance of infection and try to patch the leaking area instead. Again, this is a common surgery that is done with a CSF leak to fix it.

Kenny will be in the hospital through the weekend as they continue to drain the CSF by way of his modified shunt. By Tuesday, they will make a determination if Kenny NEEDS the shunt or not. It has always been the belief that the shunt was only necessary to relieve the hydrocephalus and would not be something that Kenny needed to function, but it would be left in because to remove it requires another brain surgery. Now with the shunt being modified to drain the CSF, they will determine if he needs the shunt and if he does not, they will complete the removal of it. If he does need it, they will put in a new one. Either way, Tuesday he is having another brain surgery...again, a common surgery, but brain surgery nonetheless.

The hope is that he will be released in a day or two after the surgery on Tuesday next week.

He is in GREAT spirits...he says that he hasn't felt this good in WEEKS...that he FEELS like he has so much energy. It's great to see him like this, but so tough because he's stuck in a hospital bed again. I truly believe that his wonderful attitude and the fact that he is feeling so good now will help him recovery very quickly from both of these surgeries in the coming days. We both know this is just a pothole in the road to recovery and we remind ourselves of that and quickly it will be patched and we can be on our way home again to be with our Charlie boy.

This is Kenny and Charlie before leaving for Northwestern on Tuesday night. Kenny has such a hard time because he can't carry Charlie around...so he was just hanging out with him on our bed while I packed a bag. I just think this is a sweet picture.

And a close up of them...we both LOVE our Charlie boy SO much!!!

So, thank you again to everyone who is calling, emailing, writing, asking if they can help us. You are...just by being wonderful family and friends to us...we appreciate it so much...it brightens Kenny's day.

Home Sweet Home

We are home...and it's so good to be here. We were both going CRAZY being in the hospital on Wednesday and then it took until 530pm to be released on Thursday, so that was a long day too. BUT, we made it home and not that Kenny is running right now, but he moved as fast as he could in the house, up the stairs and straight to Charlie. He just couldn't wait to see that sweet boy of ours and Charlie looked up at him and grinned his big old gummy grin. I think that alone healed Kenny...that and sleeping in is own bed.

Kenny has a long way to go, but I can see a difference in him already and we haven't even been home 24 hours. The next few weeks will be filled with lots of doctors appointments, physical and occupational therapy and blood work. As much as those will be exhausting for Kenny, they will also heal him, giving him things to do to keep moving down the path to recovery.

Since I haven't posted pictures in awhile...I thought I would add a few now.


Wednesday, August 27 at Northern Illinois Medical Center. We were just waiting for a bed to open up at Northwestern in the Neuro ICU. A short visit with Charlie each day always made Kenny smile.


Thursday, August 28: I left the hospital in McHenry a different way for some reason that day when I was driving Lauren and Charlie back to our house after a visit with Kenny. Right across the street from the hospital sat this Bluesmobile...I wish that Kenny could have seen it. This is his all time favorite movie...he and Dominick even own a Bluesmobile. So, I figured I would stop and take a picture or two of it on the way back to the hospital. While I was home dropping Lauren and Charlie off, I got the call that they were ready to transfer Kenny. I knew it would cheer Kenny to see the car, so I still stopped for the pictures on the way back to the hospital to meet him to transfer to Northwestern.

Sweet Home Chicago is right...we are so thankful we live so close to an amazing medical community like Chicago, with talented doctors, ready to do amazing procedures on people to help them.

A close up..."we're on a mission from God." I'm a person that believes in signs...and I looked for many in the last 10 days or so. Signs that everything would be alright...signs that would calm my fears. For some reason, finding this car, right across the street from the first hospital that Kenny was treated at, just an hour before getting the call to transfer him to Northwestern...it was a sign to me. I ran in the hospital, showed Kenny the pictures and couldn't contain my excitement to be moving to Northwestern and getting ready for another surgery that I knew would heal him the following day. He loved that the car was there and that I took pictures for him to see. I promised him a visit to the car after we were home again. But I knew...everything would be alright.

Kenny's ride to the City...

Kenny, strapped in and ready to go to Northwestern.


Wednesday, September 3: Kenny looked tired...tired of being woken up by nurses alot, tried of being a human pin cushion...tired of being away from Charlie...just ready to go home.

Now why...tell me why...would a surgeon only shave half of his head (after the 1st surgery). No one will walk around like this. The nurses and I thought it was nuts that the first surgeon wouldn't just shave his whole head. His neurosurgeon at Northwestern finally said, "get this man a haircut!! His hair is driving me crazy! I can't believe they didn't just shave your whole head the first time." So, we found out they had a barber at Northwestern that does haircuts in the hospital.

Here's Kenny's haircut the next morning. He loved it!!

Kenny and I hanging out on Thursday, September 4, just waiting to leave the hospital. Those of you who really know Kenny, know that he HATES the city...he is just not one to enjoy the fast pace. BUT...he was NEVER so happy to see downtown Chicago in the middle of rush hour during a horrible rainy day (thanks to Gustav) as he was yesterday.

There's my handsome husband with a great new haircut that I happen to love on him. And he's healthy...that's the best part. And now we are home...and he is healthy and on the road to recovery.

Let's Go Home

Kenny and I are SO ready to go home. Yesterday we both started to get the itch once his neurosurgeon stopped in to see us and said that as long as things are looking good on Wednesday, we should be going home. He feels that if all the appropriate people sign off (endocrinologist, ENT, physical therapy, etc.) that patients heal better at home and keeping Kenny in the hospital longer isn't going to help him.

He still seems on track to go home, but about dinner time last night, he started showing some signs that his ADH level was changing again and not being controlled as well by the medication. Hopefully they got that under control last night or that the endocrinologist can adjust it today and is ok with him going home. That may be the one hurdle that we may have trouble jumping today.

So, I'm headed to the hospital early today, hoping to catch ALL the doctors on rounds and see what they are thinking about releasing him. It's really hard to keep up with all of these doctors and Kenny's not good at medical stuff normally, so now, with him having been so out of it last week, the medical stuff is extra confusing to him because he wasn't awake enough to learn the vast amounts that I did and have it make sense with what they are saying now.

Little Charlie...we are TRYING very hard to make it home today for good. Mommy and Daddy miss you so much and we can't wait to see you! We love you tons and tons little dude!

Progress

Kenny is doing so well. He continues each day to make a bit more progress towards healing and milestones at the hospital that get him one step further to leaving Northwestern. We both miss our Charlie dearly and look at his pictures frequently, but I'm thankful I don't have to think about his care and can focus all of my attention on working with Kenny to get better.

The last two days, he has requested no visitors because he's just been so tired. Some of the medication he is on doesn't allow him much sleep and sleep is the best thing for him to help him heal right now. He finally began getting some good sleep today and sat up in a chair for dinner tonight and then we even watched a little TV before he went to sleep. The activity late this afternoon and this evening tired him out. They are encouraging him to get up and move around to help him start to feel more comfortable and steady on his feet doing things. A physical therapist will be working with him tomorrow to make sure he is comfortable moving around on his own.

One of the "side effects" of the surgery is that he could have some hormone imbalances that could be temporary or permanent due to the work in close proximity to the pituitary gland. Overnight, he did develop one of the hormone imbalances that is called diabetes insipidus, or DI. It basically means that you go to the bathroom alot and can get dehydrated easily from that. We met with his endocrinologist today and a simple dose of medication has regulated the ADH hormone level in Kenny again. He will need to be on a pill to keep the ADH hormone in check and have blood work done a few times a week and hopefully in a few weeks it will go away on it's own. If not, it will probably be a problem that Kenny has to live with for the rest of his life and regulate with medication.

I also spoke to one of the neurosurgeons today and he is doing just great according to them. The CT from yesterday shows that his swelling and fluid retention is almost gone. He said that his MRI from yesterday is "fantastic."

I say it again...he is amazing. He doesn't remember much of the last week of his life, which I know has totally shaken him, but he just keeps trying to recover and work on his memory by rattling off facts, dates and information to me to make sure he is remembering correctly. We had a long talk last night about what has happened in the last week and I helped fill in the blanks for him. He continues to want me around all the time, I think in part because he's not confident his memory is great...when it really has come back to him wonderfully.

Physically, he looks the same since the most recent surgery was through his nose. He does have only the right side of his head shaved from his first surgery to install the VP shunt. I'm working on getting the other half shaved for him so he doesn't look so uneven. :) Hopefully Ted will be able to help him out...he's going to look great with a buzz. He does have a decent opening on his head from the shunt placement and on his belly from the shunt as well. Neither seem to bother him much and are healing.

Little Charlie...continue to be good for your Grammy. She's taking such good care of you. Mommy and Daddy love you tons and can't wait to be home with you to give you lots of hugs and kisses and Daddy's been working on some new songs for you.