Kenny up date

Sorry it's been so long since last update. It's been crazy around here. Kenny is doing great! After about a week of being low key by choice he is now up and going full speed or at least trying. He's limited for up to a month which is hard on us all. After coming home on Friday we had two rough nights where I ended up sleeping next to him. Slowly during the week he got more energy and his head didn't hurt as much. He's now doing great! But we still need to keep him on the calm side.
Thank you everyone for your prayers they have been felt so much. Please keep praying as on the 16 of this month Kenny will get all the staples that they put in his head out. This will be hard on both him and I. And then on the 5th of Oct we will have an appointment with the Neurosurgeon.

We're home

We were able to come home last night! We got home around 6pm. Kenny went right to the couch in the living room asked for a juice box and just laid there quietly. He did eat a little mac and cheese last night. And he had a very unrestful sleep. I know because he was next to me all night. He woke up at 5:30 and after a trip to the bathroom he said his head hurt. So he is now resting on the couch in the family room after he got some montirn. Now the adventure begins please continue to pray for Kenny to get better. It is hard to see my very active little boy not wanting to do anything except rest. Though it is the best thing for him.

Over night and morning of day 2

Kenny was up and wake part of the night. Kevin and I took turns sleeping. He did ask for dinner but then didn't eat it. I reheat the mac and cheese 2 times and he still wouldn't touch it. Both times after he said he wanted it. Around midnight Kenny to off the bandage on his head. It was too tight according to him. Then there were labs around 5:30 and they had to draw blood. Not a happy camper then about an hour later one of the plastic surgeons came in and took the drain out. Again not happy. There is a good chance we could go home today. If Little man eats and can continue to keep it down. We are planning on taking a walk down to the coy pond later today and hopefully that will help him want to go home. Here to what the next few hours hold.

Afternoon of day 1 in hospital

Kenny has slept a big part of the day and isn't eating much of anything. He has had a popicle and that is it when asked if he wanted a milk shake he shook his head. We got him one anyway with hopes that once he see's it he will change his mind. Also he is getting puffier expecally around the eyes. The most that he has talked is when Memaw and Buppa came by with r2d2 toy for him. He needs to eat in order to go home. Please pray that he will get his appitite back.

night one in the hospital

Kenny slept most of the night. He threw up once. They will be moving us from the picu into the a room on the first floor. Both doctors have come in this mornign and talked to us and are happy with the procress he has made. He has yet to eat.
This morning at 4am he did ask to watch tv, :) and said he was thristy. He was able to drink some water and hopfully when he wakes back up we will be able to give him some juice. They are working on taking him off the mophanie and on to tynolal and motrian. We are paising God of all that he has done.

Surgery

Kenny is in recovery! Things went well. Both the doctors said that it went according to plan. We are very thankful for that. The surgery it self took about four hours. He will be in recovery for about two hours and then in picu (pedicatric intesive care unit). Most likey we will be there just over night. WE will then transfer to a regular room. Where we will stay for two more nights. He does have his head wrapped and a drainage tube. Kevin and I want to thank everyone for there prayers and love it was so felt. I will keep you up dated on his process as it happens.

Mornign of surgery

Kenny's surgery is this morning. We will be leaving the house around 5:30 and they will start at 7:30 this morning. He will be in the operating room for 3 to 4 hours. Then to recovery to PICU and then a room. We are trusting our Lord Jesus as we wait. We know who is in control and who is not. Kenny is God's child and there for he will take care of him. We welcome your prayer as we trust in our all mighty Lord. Thank you

Have surgery date

Kenny will have surgery on Wednesday Aug 25. the doctors will start at 7:30 in the morning and it will last about 3 1/2 hours. Thank you for your prayers.

Doctor appointment and staples removed

Kenny had his staples taken out. He did pretty well, I got to hold him while it happened. He freaked out more over the fact that it was happening cause he knew it.
After that we went over to Dr. Williams office to see the plastic surgeon. We got some of our questions answered. We know that the surgery will take about four hours and that it will be similar as what happened at four months. They will enlarge the front of his skull. They will have to put some filler in the skull where they will space it out because of the bone won't grow back this time.
It will be about a month of recovery as far as Kenny not being able to do anything that he could hit his head on.
We are waiting on a call from Dr.Brahma's office to find the answer to some other questions we have and also for a date for the surgery itself.

Thank you for your prayers and thoughts.

Kenny's procedure

So we set an appointment to do a ICP (internal cranial pressure)test for June 21. In between the when we had the MRI and June 21 Kenny started to complain of headaches when he was real active this is a symptom of pressure on the brain.

June 21 comes and we head to the hospital for the procedure. We knew that this test would keep us at the hospital for 24 hours. They Kenny some "Happy Juice" so when he left us he was a little goofier then normal. They placed a monitor into his skull. this took about 30 minutes to do. The recovery was the hardest because he was coming off the medication and was crying for me. Kenny finally settled down and we were moved to a room. Now for the hard part keeping my very active boy laying down on his back for 24 hours with the exception of going to the bathroom and eating.

I want you all to know he did great! The tv was are friend that day but even when he got sick of watching tv he would play with his two figurines of Buzz Lightyear and Woody, that his Memaw got him. They were a very big help. I know that God's hand was on him that day because that is the only way Kenny would of stay so still for such a very long time. I know I couldn't of done it.

Let me explain how the test works: the monitor in his skull monitors the pressures in his skull by numbers.

1-10 low

11-15 moderate

15-20 high

over 20 not good

We were able to stay in the low category most of the time with spikes in high end. Except when he was sleeping for three hours he was above 20.

We found this our the next morning when the doctor came in the next morning.

That's when we found out that Kenny would have to have surgery to enlarge his skull.

I am not sure just what that all entails though I do have a good idea because of the surgery at 4 months.

So here's where we stand: Kenny will have the 2 staples removed form his head on Monday Aug 2. After that appointment we will head over to Dr. Williams office the plastic surgeon who worked on Kenny at 4 months. Hopefully after that appointment well will know when the surgery will be.

Please be praying for Kenny for the 2 as he doesn't like pain at all and freaks out and moves a whole lot.

A LITTLE LAUGH

While in the hospital Kenny had to get up to go potty. He turned and looked at the monitor that was hooked up to his skull. He turns to me and asks "What's this?"

"It's monitoring your brain." I explained to which he said. "I always wondered what my brain looked like. It's green squiggly lines!"

Because there are so many friends and family that are praying for my family and especially my son. I thought I would do a blog so that you can all know what is going on. And for those that don't know what's going on this will help fill you in.

Kenneth Carl Schwob was born Aug 6 2005. The doctors were a little concern that his head wasn't shaped correctly. We found out a few weeks later that he had what is called Craniosynostosis. Basically when Kenny was inside of me his to front lopes of his skull fused together. The results surgery at 4 months old. Which he came out with flying colors!
We were told that there was slim chance that he may need surgery later on in life.
As we went to follow up appointments with the neurosurgeon we were in formed that most likely Kenny would not have to have surgery at all.

Fast forward to June 2 of this year. Kenny fell off an inflatable slide at a gym I was attending and got a concussion. We ended up over night at Scottish rite (Children's hospital). They had taken a CAT scan and found something in his skull that didn't look right. So two weeks later Kenny is have an MRI which showed that the inside of Kenny's skull was ridged and not smooth like normal. Also he has Chiari, this is where part of the back of the brain shifts downward through the bottom of the skull area.

Dr. Brahma informed us it looked like his skull was to small for his brain. And wanted to do another test to see how much pressure was on his brain. This would let us know if he would need surgery or not. Dr. Brahma said that if the pressure were low and he showed no systems then there would be no reason to do surgery.