Tuesday, September 30, 2008
Good news is that the doctor appointments went well and his nose looks like it's healing really well.
We both want to complain that he's back at Northwestern or be frustrated, but it's hard to because you know if his neurosurgeon wasn't a cautious man and didn't end up finding the blood clot yesterday, this could have been much more serious if it had traveled into his lungs or other unspeakable places. So, we are just thankful it was caught now, while in his leg near his ankle and that they are proactively treating it.
Friday, September 26, 2008
Thinking about giving a smile...he knows that I want him too, but he's kind of a stubborn kid!
Charlie continues to amaze us with all of the great new things he does daily. After all that we have been through in the last month, Charlie has been a great, big, bright light at the end of the tunnel and we just couldn't wait to be home with him. I've started back at work this week and it's nice when I come home that Kenny gets to tell me what Charlie did today.
Some of Charlie's accomplishments in the last month include:
*finding his feet...he loves to grab for them
*playing on the play mat with the hanging toys for long periods of time
*trying so hard to roll over from back to front...he gets about half way there, so it won't be long
*squealing in delight
*laughing and talking...he's great at entertaining himself and others
*falling asleep on his own at bedtime (naptime is still a bit of a challenge but we are working on it!)
*sleeping 10 hours + a night
*drooling more and more each day
*playing with his books that make crinkle noises -- these are a big favorite
*grabbing on to things, like toys, fingers, the bottle
*KICKING --- the boy has some STRONG legs! He moves himself across the crib at night by swinging his legs up in the air and throwing them down on the crib.
*he just graduated from about 5 - 6 oz bottles to 4 - 8 oz bottles a day
*giving VERY social smiles to lots of familiar people and strangers alike
*this isn't such an accomplishment, but little Charlie has developed eczema, poor little guy
*he has found the TV, so it's time for us to be careful when he starts paying attention to it too much. It does help though when we are trying to get him to stretch his neck to the left more!
*wears mostly 3-6 month sized clothing...there are a few 0-3 months still hanging around, especially on these warmer days
*he is the happiest little baby ever first thing in the morning when you go into get him from his crib. A sweet baby smile is a great way to wake up!
Thursday, September 25, 2008
This is what Charlie does alot of now...eating his hand, wrist, thumb and fingers and see his little leg kicking??!! He loves to kick, hard kicks at things and to move himself across his crib. He especially has become fond of the bear and bunny pictured here.
Charlie and his play mat...Grammy got him to LOVE his mat and he spends so much time there happily playing now. He grabs on to the toys hanging and really enjoys it.
Monday, September 22, 2008
Saturday I did a little shopping on Michigan Avenue (I need some work clothes that don't have drool marks on the shoulder!) and picked up a yummy Gino's East pizza for Kenny and I for dinner. As I was enjoying the nice weather and wandering around...I realized that I have a lot of things to get used to again.
I won't start my day by seeing this sign pulling into the parking lot...
Friday, September 19, 2008
Thursday, September 18, 2008
We've learned so much in these last few weeks and not just the medical stuff (although I do believe I could have another degree under my belt after all of this). Much of it, we probably knew, but didn't think too much about. We have a wonderful, amazing family that has supported us in ways we never thought we would need, but are so thankful they are there to take care of us and our Charlie. And, we have fantastic friends and coworkers that continue to call or email with offers to help us by doing any number of things for us, probably the most popular is to babysit little Charlie...we wonder why that is such a popular item!! :) We continue to be amazed at the outpouring of support and feel very blessed.
These last few days we have had some time to take in all that has happened and the wonderful offers we have received and we think about how we can thank people, because saying "thank you" doesn't quite seem like enough. Pay it forward is the one thing that comes to mind...and teaching Charlie to pay it forward and be a wonderful, kind, giving human being, as so many around us are...that's the thing that comes to mind. We wish none of what we have been through on anyone, but if ever our family or friends are in a kind of need, we hope that we can help them as much as they have been there to help us.
Wednesday, September 17, 2008
So now we send positive thoughts and prayers to no CSF leaks and more good old healing in the next day or so, to keep that schedule they gave us on track to get out of here and enjoy our porch and this beautiful weekend that we have coming our way. We can't wait to see our Charlie boy!
Tuesday, September 16, 2008
Other than that, he is doing well. The CT this morning showed further improvement, that the air is moving out of his ventricles and the fluid is taking over, as it should. Various hormone levels are kind of moving around, but that is to be expected and could cause different problems for a few months or even permanently. We are working with some great endocrinologists though, that we really like, and they are on top of it.
The plus side is, Kenny and I got to chat alot, read the RedEye, make better friends with some of the nurses, enjoy each other and watch some TV (and comment on daytime TV...seriously, have they not updated the Price is Right set since I used to watch in with Grandma in the 80s??). We don't get this much time together usually...when we are both awake...and not busy doing other things...or tending to Charlie's needs...so today was a nice day, despite not much medically exciting news.
Hoping for some good news tomorrow, like a scheduled surgery to remove the shunt...so we can get ready to head for home!!
Monday, September 15, 2008
Sunday, September 14, 2008
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!
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.
Friday, September 12, 2008
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.
Wednesday, September 10, 2008
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!
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.
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.
Friday, September 5, 2008
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.
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, 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.
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.
Wednesday, September 3, 2008
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!
Monday, September 1, 2008
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.