Sunday

Christopher got out of bed today for the first time since surgery. He walked down to the playroom and played some Wii. He painted for a little while in his room and watched lots of tv/movies. This is the most alert he has been since surgery. This was the day he finally got some food in his little belly. He had some mac and cheese, a piece of watermelon, & a few sips of milk. About an hour later he asked for some spaghetti...so we have an order in for some spaghetti and ice cream.

They also got the results from the EKG today. They say he has Sinus Arrhythmia. He will have to have followup tests when he gets home.

All in all it has been a good day. :)

Saturday

Christopher is doing well overall. His goals for the day are: 1. Tolerate Eating (Eat Something) 2. Walk/Play 3. No Pain They took off his bandage...it was stapled to his head, and then there was a bandage holding it on at the base of his skull on his neck. He cried of course. The worst was the bandage...the staples weren't near as bad as the tape.

The incisions look good...meaning they don't appear to be infected. There are 2 of them; with one being just over 3 inches long and the other being about an inch and a half or so long. They are starting at the top of his neck going up to his skull and then shorter one is above that. The shorter one is where they cut to get part of the Dura (sp?) to graph it to his Cerebelum that they cut off. They cut off the lower part of his Cerebelum that was being herniated. I found out the 15mm Chiari Malformation is actually meaning that 15mm of his Cerebelum was being pushed down into his neck out of his skull down into/around his spinal cord. That is why one side was completely blocked off and the other side ended up being wrapped around his spinal cord. Those 2 factors made his surgery much more complicated the Neurosurgeon said. The MRI that was taken on Wednesday also confirmed that he does have Hydromyelia. This is an abnormal widening of the central canal of the spinal cord that creates a cavity in which cerebrospinal fluid (commonly known as spinal fluid) can accumulate. The Neurosurgeon said that we will have to watch and see how he does, and if it worsens he will have to have surgery again to put in shunts to help it drain. Hopefully it won't come to that.

He also had an EKG today due to his heart rate being low sometimes. It has dropped down to 54, so that's why the EKG was done. We won't have those results till tomorrow. His normal heart rate prior to surgery was 90-100, and a little lower when sleeping.

He has refused to take oral medicines...he said he's tired of taking them. I told him that if he didn't take it that he had to sit up and move his head to show us that he didn't need it....so he did. LOL He's doing good, but could be a little better. Please continue to pray.

He's out of ICU and in a regular room. Making good progress. He's peeing on his own into a hand held urinal. He's a bit nauseated and threw up a little. He's doing really well though. His neck is stiff, but he's watching TV, playing his DS and playing with a couple of action figures right now. He still has pain of course, but taking just some Ibuprofen for it. If it gets bad then he'll have to take some muscle relaxers. Just a quick update.

Quick update

Christopher is still in ICU today. They took the catheter out last night and he is urinating on his own. Yesterday they tried to wean him off the morphine and use oral doses of Loritab for pain. Today he is in alot of pain and they are giving him Morphine again. The nursing staff say he is progressing well. Last night he watched bits and pieces of the Transformers 2 movie...watch a little...sleep a bit...watch a little more.

What a Day

Today was a long day. It began at 5:30 am, and is now to the relax go to bed stage. Christopher's surgery went well. The surgeon said it was more complex than he expected and didn't know about what he found until he opened him up. Christopher's right side of his Cerebellum was completely blocking that side of his spinal canal (I'll reread this tomorrow for accuracy), and the left part of his Cerbellum was forced to find it's way under and around his spinal cord...so it seems there was some untangling to do along with cutting the skull away. He only lost 10cc's of blood (something like a tablespoon) during the surgery. When I first saw him in recovery he was asleep of course, and has some bandages stapled to the back of his head...yes...the bandage is stapled to his head. It is about an inch wide (the bandages), and about 4 inches or so in length. He is sore, and is on Lortab for the pain. He is able to take it orally, and has taken some sips of water and Gatorade. One of the times he woke up...in the brief moment he was awake...he asked to see the game we had got him for his DS. He wanted to see the back of the box...LOL...he loves his games.

The surgeon and staff at Dallas Children's has been amazing. The hospital is great, and exceeds my expectations of it's rating. It should rank higher in our opinion. We were also told by the nurses that Dr Sklar is the "MAN" to be doing this sort of surgery in the Nation, and if their child were in need they would only use him. That was comforting. Thank you for everyone's prayers. Hopefully he will be more awake tomorrow and not in pain.

On the other front. Here's a link to our friend that was in the accident in Oregon. It's a miracle that she is alive to be treated. She has a long road, but seems to be putting up a great fight. Here's a link to the CaringBridge for Laurie.

When it rains it pours

Christopher is in surgery. Surgery just started 10:20am on the 27th. He was fine going in...better than his parents were. He had been given Verced...made him act like he was drunk. He thought he was on a plane ride as his bed was rolled to the surgical room. It's very nerve wrecking to wait for all this to be done. Just keep praying for him. Now for the pours part...I have limited information.

Laurie...which is Libbey's best friend from High School, and the Maid of Honor in our wedding...was in a terrible car accident. I have limited information, so here's what I know. She sideswiped, or was sideswiped by, a tow truck that was towing an 18-wheeler. She was partially ejected from the car and the airbags did not deploy (they wouldn't for a sideswipe as far as I know). She is in critical condition and had 12 hours of surgery last night, and is in surgery today. She is thought to need another 5 or so surgeries. Both of her femur's were broke. Please pray for her as well.

Both of these things going on today is a lot of stress, and I know we all have our stresses. Thank you all for all of your support and prayers.

Pre-op appointment

Woke up at 6:30, got everyone ready, grabbed breakfast at the hotel. Christopher had an early breakfast because he couldn't eat anything after 8 because of the MRI in the afternoon. We left the hotel around 8:15, the hospital is about 12 miles away...and it took about 40 minutes to get there. Traffic was backed up due to an accident and the entire 3 lane highway was routed to get off the ramp down to 1 lane thru a stop light...so it must have been serious.

We got into the Pre-op room and saw a nurse in there. She took his basic vitals and got some more history on him. After about 30-45 minutes with her we sat in the room for another 20 minutes until the Nurse Practitioner. She got more history and yet more history on Christopher. In this we talked a little about his heart murmur....keep in mind this was discussed with the Neuro-surgeon on his first consult back in April. So after the Nurse Practitioner we waited for the Anesthesiologist....this took only 10-15 minutes (I think). He came in and seemed very knowledgeable, but he also put a lot of fearful thoughts with him talking about risks and such. This was not cool, but yes there are risks. In him talking to us he asked about Christopher's heart murmur, and if he was seen by a Cardiologist recently. He was told no and that the Cardiologist that did an EKG on Christopher before had said it was an "innocent" murmur, and he never had to see him again. The Anesthesiologist said he needed to be cleared by a Cardiologist before the surgery since Christopher was "not fit for surgery". That statement didn't help, and then now we had the hospital scrambling to get his old Cardiologist on the phone and his Pediatrician to get cleared for surgery. This was because they said the only Pediatric Cardiologist appointment was in July. WTF! So Lesley helped to coordinate the calls and got the hospital the numbers and names they needed. The hospital was able to get all the info and keep the ball rolling, so after wondering up until 3:30pm if the surgery was still on...it's still on for tomorrow. There are more fears now, and I also question why the Neuro-Surgeon didn't inquire more about the murmor...but Lesley assures me of her confidence in Dr Sklar...she has been in more contact with Sklar. More later if I feel up to writing more tonight.

Schedule for Christopher

Hi all. Here's the schedule so far. His surgery on Thursday will be 4 to 6 hours on average is what we are told. Please pray for the surgeon to have steady hands and a sharp mind.

Wednesday, May 26

9:45 AM – pre op

1:00 PM – register in Admitting

2:10 PM – MRI full spine w/ gated CSF (no contrast)

Thursday, May 27

8:30 AM – surgery: Chiari Decompression

Background

We are starting this blog to keep friends and family updated on Christopher, his Chiari surgery, related procedures and recovery....

Christopher started having severe headaches and nose bleeds early in 2010. He also would say things tasted funny that he was accustomed to eating. He would go to the nurse often during school. He went to his pediatrician and she was worried due to the odd tasting food and nose bleeds with the headaches. Naturally the thoughts went to a tumor in his head. The pediatrician wanted and MRI right away. His MRI revealed he actually had a Chiari Malformation. What is Chiari Malformation? The Chiari Malformation is 15mm...sizeable enough...especially for a 5 year old (now 6 as of May 17th). The Chiari Malformation was causing his brain to push down on his Cerebelum, and for it to herniate...which equals major headaches. He has been getting 3 to 6 (or more) a day. They are sometimes the sort of headaches that make him nauseated, and some even had him grabbing/squeezing his head. Naturally they have laid him up and made him cry due to the severity. There isn't anything other than Tylenol that he can have, but it doesn't really help. The malformation is serious enough that a car accident or other accident that causes a whiplash motion could cause the malformation to sever his spinal cord.

We were trying to get him in at the Mayo Clinic, but the appointment was too long to make him wait. His pediatrician had already set a consultation appointment with Dr Sklar in Dallas, TX for April 13th. We couldn't get him into the Mayo till June, so we decided to go ahead with Dr Sklar. He has top credentials for this surgery, and is a teacher of the Chiari surgery in Texas. He was one of the 5 Neurosurgeons for separating a set of conjoined twins. Here is his office and some info on him.

Christopher's surgery is scheduled for May 27th in Dallas. He is having an MRI on the 26th that will take video of his spinal fluid moving thru his spine in real time. This will take about 2 hours, so he will have to be put under for this also. The poor guy will be put under 2 days in a row, but luckily the MRI anesthesia will not be fully under...just enough to keep him from moving around.

We will be in Dallas for over a week. I hope that he's out of the hospital before we leave, but I don't currently get PTO at work...so I can't miss that much work and not to mention the travel costs. We looked into the Ronald McDonald House, but they don't make reservations....you have to show up and see if they have room. It's an awfully risky thing to do when you travel over 1000 miles. In addition to this there is a conference in town, so the hotels that give a medical discount are completely booked up. We found a hotel 12 miles away, so in Dallas this means a 20 minute drive at the quickest.

We will be very happy to have this behind us. Christopher is a 6 year old boy, and full of a ton of energy...but the headaches really change his demeanor. We will update this blog as his surgery and recovery progresses so that you can keep up to date. Thank you to everyone that has been praying for him and for his surgeon to have steady hands.