all about Collin

first let me apologize for not posting sooner. Things have been crazy around here to say the least. Not to mention I came home to a broken laptop.  :(  (good news though, I got a NEW one)  YaY!!! Oh and paid cash for it. (hubby is taking Dave Ramsey’s Financial Peace Univ.)
And I wanted to take some time to clear my head and remember the details to have for us for Collin later.

Most of you follow me on facebook, so you know most of what has been going on. For those of you who don’t and for me to have a clear recollection,  here we go.

We arrived @ Children’s last tuesday just before 8AM. We were to be there by 8:10am for surgery @ 10:10am.
We check in, fill out a couple forms and are immediately called back to the “holding” room, where the nurses, anesthesiologist, Dr, etc come to check Collin over, ask questions of us, and go over the procedure once last time. 
Things move rather quickly for awhile.  Our young adults Minister from Church comes by to see us & Collin and to pray with us prior to the surgery. (He also has a son Collin’s age and they are our neighbors)
My Mom & step dad arrive and we are just hanging out WAITING. and waiting and waiting.
During all of the waiting Collin was able to go to the Ocean Room and pick out a toy. All kids having surgery get to pick a toy from the Ocean room, which is basically a large closet FILLED to over flowing with toys.

  
Collin chose a Dr’s kit…how appropriate.
And he proceeded to use us as his patients.

   

When the Nurse Practitioner came in to check Collin out, she asked if she could get anything for him…he said “a drs suit”. What he wanted was a pair of scrubs like all the drs were wearing. She told him she could not get him a pair in his size, but she could get him a hat, mask and shoe covers.  He agreed and she came back with them… 
 
the future Dr. Collin  ;)

And the waiting continued, so we were allowed to go to the toy room, where Collin could pick out a couple toys, games or books to occupy some of the time.

He has been wanting this very book from Kohl’s for a long time, so this really helped to pass the time along.
 

We also opened presents from our cousins in Indiana. THANKS Susie & family…Collin says “these are the BEST cars EVER”.

and the wait continues
Finally @ 12:05 pm (TWO hrs after he was to be in surgery) they came to get him. And we were off to the waiting room.

I did not get any pictures of them taking him bc he was crying and I was crying and my Mom was crying and it was just a mess.

The surgery itself was to take 1hr…and @ 1;10pm Dr. G came in to talk to us. He did find an abnormality and was able to realign Collin’s pathway for his spinal fluid to drain. He had been re-absorbing the spinal fluid prior to this. He was a little concerned bc when he first went into Collin’s head he did not know where he was at…turns out bc of the dilated ventricle he was not in the correct spot and had to come out and go back in. He thought there could be some temporary nerve damage to Collin’s left side, but assured us that it would only be temporary.  He tells us he will order a CT scan for the morning to be sure.
Now just more waiting until Collin is out of recovery.
Shortly Dr. G comes back in to tell us Collin is starting to wake up a little, but it will take some time and that he decided to go ahead and have the CT scan done today.
WAIT
WAIT
WAIT
About an hour & half later  they come wheeling Collin out of recovery for us to join him for his CT scan.  He is groggy, but alert and wants either Me or Daddy to be with in his sight at all times.

His Thomas (aka Comfy) blanket and Handy Manny (aka his son) got to go into surgery with him.

He lays real still for the CT scan and now we are on our way to his room.
Once in his room he is in and out of sleep, but does not complain about pain.

his bandage is in the shape of a heart. One nurse commented that in the 11yrs she has been @ Children’s she has never seen a heart bandage. We have no idea who did this as Dr. G was surprised as well.  :)

The CT scan showed no damage and Collin is moving both sides of his body equally. :)

PRAISE THE LORD!!!

Collin does get sick three times…mostly from the anesthetic. He eats some crackers and popsicles and drinks sprite.
 
Collin sleeps pretty good through out the night and still does not complain about the pain. He does not act too much like himself, but that is to be expected.

The next day, he is allowed up to move around some and that makes him feel better, but he still wears out easily. What do we expect the poor boy just had brain surgery.

The view just outside of his window was of a HUGE playground.

About 3:30-4pm we were released to come home…YAY!!!


THANK YOU ALL for your prayers and words of encouragement. They have meant SO much to us. The blogging world is AMAZING!!!
I just LOVE how so many come together through the Lord and the internet.

We go back to Dr. G on Monday for a follow up and will have another MRI in Aug-Sept.
If all goes well, after the MRI we should be able to start weaning Collin off his seizure medicine. That will be another PRAISE!!!

Tuesday June 23, 2009

10:30AM…
Collin will be having surgery.

We went back to the neurosurgeon this past Monday. After discussing at length our options, the risks, the procedures, recoveries, etc. We decided it was in Collin’s best interest to go ahead and have Dr. G proceed with the surgery.

The surgery itself will be about an hour long. It will consist of him drilling a small hole into the upper part of Collin’s head and sliding in a tiny camera to take a look. Depending on what he finds, he will proceed to use an instrument to re-align the pathway between the two ventricles, thus allowing the spinal fluid to drain properly again.  If he feels this is not an option once he is in there, he can close up and go in at another spot on the lower part of Collin’s head and place a shunt to help relieve the pressure that is there and help with the draining.
The shunt is a last resort. And yes it could go in the same spot he will be going into with the camera, but it is safer to put it in from the bottom, rather than the top according to Dr. G.

I do apologize for my lack of medical knowledge/terminology.

Please keep Collin in your prayers over the next several days/week.
The incision should not have much pain as there is no muscle where they are going in at.
We will spend one-two nights @ Children’s and then he will be able to come home on some restrictions for two weeks until he goes back for a follow up with Dr. G.

Thank you all for your prayers & concern for our little boy.

There is a very good possibility that this surgery will eliminate the seizures and therefore the need for the seizure medicine.

I will keep you updated as I can.

Collins MRI results

So yesterday Collin went back to Children’s Hospital for another MRI (he has had several since 2006) and to meet with our new Neurosurgeon (our previous one moved to AZ) and get the results of the MRI.
His appt was in the afternoon, so this is what we started our day with…

Collin walked smack into the hutch in the dining room.  AND did not even whimper.

The good news here is he is fine and it looks 100% better today.
Always a plus we were seeing the neurology dept. :)

So, onto the appt & results. 
I first want to disclose that I am just a Mom, I am not a Dr. nor do I play one on my blog. I do not have the knack for medical terminology that MckMama has, unfortunately for me & you.

I can not remember if I addressed this before, so just in case I did not, I will catch you up. Back in 2006 when Collin had his first seizure, the ER here @ our local hospital ran a CT scan, where they found one of his ventricles (on his brain) was slightly larger than the other. This sent us down a long road of trying to find out why and what to do. While it was decided by us, as well as his Neurosurgeon @ the time to just monitor it since he was excelling in all other areas and it seemed he was still able to drain the spinal fluid properly, so there was no use in doing a risky “brain” surgery if it was not absolutely needed.

At today’s MRI and follow up it was shown to us that the ventricle is still enflamed (larger) than it should be and it is starting to push things out of the way and could be causing pressure to his brain, thus causing the recent seizures. Though they can not be sure. (remember he had an EEG and it came back NORMAL)
Because of the ventricle pushing “things” out of the way, it is the Neurosurgeon’s opinion that the spinal fluid is no longer draining properly, but is being absorbed elsewhere.

This needs to be fixed and leaves us with 3 options…
1. do nothing and wait (since Collin is thriving in all other areas)
2. a shunt
3. going into the brain with a camera to see with human eyes what exactly is going on. And then reconstructing a path for the spinal fluid to drain. 
 
All 3 options have risks. We, at this point are leaning towards option 3, but have not decided yet. We will meet back with the Neurosurgeon in a week to a month, after we make our decision to get things started.
We are placing this in God’s hands and trust him fully that we will make the best decision we can for Collin. I wish that I could say by doing that it makes this easier for us, but we are still struggling with this.

Please continue to lift our son in prayer that we will make the best decision for him.
THANK YOU!

another seizure

This morning I woke up to Collin vomiting. After the first episode he was responding to me with short one word answers. I cleaned him off and laid him beside his bed on the floor to get the sheets off the bed, when he threw up again. This time he would not respond to be with words, just with mmhmm's and uh-ah's. By this time I was on the phone with Preston to see if he had noticed anything this morning before leaving. I hung up with him and called 911, as Collin was not responding by now at all.
A few minutes later they arrived and off we went to the hospital. The ride in the squad found Collin still not responding verbally, but like he was trying to come out of the seizure and was falling asleep. I guess from what I was told by the medics that it is normal for a child to go to sleep after a seizure. 
Once at the hospital he got a work up of his vitals, but they mainly let him sleep. Then he had blood work and numerous Dr's, nurses, aides, PA's & students came in and out. The Dr. spoke with our pediatrician and with a neurologist who gave Collin's EEG from yesterday a quick read. She saw a couple trouble spots on it that could indicate a seizure disorder.
We were RX'd Keppra to prevent the seizures as well as diastat to stop one in progress. He will be seen next week by the neurologist to get a more in depth read of the EEG and for another work up by the specialist.

Right now he is back to acting just like himself.
PLEASE keep him in your prayers. And I will update you as we know anything.