Back to school!

T.J. was finally able to go back to school today. His fever was down to 99.8, so I let him go. He made it through the whole day, but is extremely tired this evening. I'm sure each day will get a little easier.

Fever continues

I spoke with the on call Neurosurgeon twice yesterday. All T.J.'s labs have come back normal, so they feel he has just picked up a virus. They advised us to keep him on the Tylenol/Ibuprofen rotation and to continue to take the antibiotic just in case. Last night his fever spiked to 104, I spoke with Dr. Vorhees again and he said to just keep doing what we're doing and it will hopefully break soon. We are shooting for returning to school on Wednesday.

Slight scare.

We spent last night in the ER at Riley. I noticed yesterday evening that T.J. seemed kinda wiped out. When I put my hand on his forehead he was burning up. He had a temp of 103.4. I called his doctor's office and spoke to the on call Neurosurgeon. He advised me to bring T.J. in. We got there about 9:30 and his temp had gone down a little, but was still 102.6. They did some blood work and swabbed him for strep. The initial strep test came back negative, but they sent out a culture. Due to the fever and a fine sandpaper rash on his chest they feel that he does have strep. So, after 6 hours in the ER we were sent home with a prescription for antibiotics. His temp was down when we got home, but it's back up to 102.4 this morning. He is so worried that this will keep him from going back to school on Monday, but as long as he responds to the antibiotic he should be fine to go by then. The on call Neurosurgeon was really impressed with how well T.J. was doing this short of time after surgery.

Doing well

T.J. continues to make progress in healing. He gets a little over confident when he is feeling really good and thinks he doesn't need to rest as much. He then doesn't feel as well. The doctor told us he would have good days and bad, but the good will far outweigh the bad. He was able to go to church this morning and stand up before the congregation and thank them for all their prayers, love, and support during his surgery and recovery. They gave him a standing ovation. Our biggest challenge now is to keep him from wanting to do too much too fast.

We're home!

T.J. spent the morning at the hospital touring around taking pictures of things he wanted to remember and having pictures taken with his nurses. All of the staff were amazed at how well he has done with this procedure. They were all impressed with how well he tolerated the pain and how quickly he is heading home. We left the hospital around 9:00 am this morning, dropped off his prescriptions, stopped to see G and are now home and he's sleeping on the couch. Dr. Smith said it's fine to do small outings and to have visitors, but if he gets tired to just let him rest. At this time he is supposed to go back to school on December 1. Dr. Smith said at first he may want to just try going back half days and work his way back to full days. Things seem to be going very well. Once again we are so appreciative of all the thoughts, prayers, cards, food, visits, and most of all love from all of you.

The bandages are off!

This is a picture of T.J. on Wednesday morning. The resident came in and took the bandages off this morning. He's in quite a bit of pain this morning, as the pain block from surgery has totally worn off. He's needing some IV morphine to control the pain, so we'll have to wait and see how he's feeling later to know if we will be released today or not. If the pain still needs to be controlled by IV pain meds, then we will need to stay until tomorrow. He is still doing very well and sends his love to all.

Tuesday evening, feeling pretty good!

This is T.J. on Tuesday. He had lots of visitors and was able to take a couple of trips out of the room. His first visit was to see the toy train display on the 4th floor. His next trip was downstairs to the library and to McDonalds. He is looking forward to being able to get on the tram and go over to Methodist to see their toy trains.

Great progress

T.J. is pictured here with the wonderful Dr. Jodi Smith. T.J. is doing so well that they feel he will be ready to come home tomorrow. His pain level is very minimal. He's had all his tubes detached, his foley removed and is into his own pajamas. He's eating and drinking well. We are hoping he is able to go downstairs this afternoon for a concert in the atrium. Things are really looking great!

Surgery

Well, it's been a very long day. We arrived at the hospital at 5:30 am. We were taken back to the pre-op area around 6:00 am. We were joined back there by Kay (Nana) and Kurt (our pastor). T.J. was in great spirits, playing thumb war and rock paper scissors with Kurt, up until about 15 minutes before surgery. Then his nerves kicked in. He got very upset and was crying. The nurse administered Versed to help him take the edge off. When he left for surgery he had calmed down, but was still a little teary eyed. Our first update came at 9:00 am. At that time we were told he was calm upon arrival in surgery and was talking about Bella, our dog. He had been put to sleep by mask (strawberry scented gas) and was being prepped for surgery. The 10:00 am update revealed she had removed the bone segment and was proceeding through the layers to shrink the cerebellar tonsils and push them back up where they belong. The 11:00 update indicated that all was going well and Dr. Smith was getting ready to close. By noon we had received a report that he was headed for recovery. At 12:30 pm we were summonsed to meet with Dr. Smith. She informed us that she found a surprise when she went in there. She found a large amount of scar tissue. She felt T.J. must have had meningitis at some time in his life, but we were not aware of this. Possibly due to the limited range of motion in his neck to start with. She did feel the surgery went very well. She was able to return the cerebral spinal fluid flow to normal levels. She removed a 4 1/2 cm by 3 1/2 cm piece of skull bone, as much scar tissue as she could and also removed the 1st vertebrae and shaved the top of the 2nd. At this time T.J. is in ICU on the burn unit. Dr. Smith prefers this unit as it is small and gives great individual care. He is resting comfortably and is just saying he feels stiff, but no pain at this time. He seems to be tolerating liquids pretty well and we are going to try to progress to food sometime this evening. Thanks for your continued prayers and support.

The night before

T.J. had a wonderful day. He was annointed and prayed for at church. He also received a gift package from the Indianapolis Colts. This included some posters, team books, a DVD, folders, pens, pencils, etc, and a Colts hard hat autographed by Tony Dungy. The Colts have also placed him on their prayer list. During the evening the youth from church came over for prayer time with the family. All the prayers are definitely working. T.J. went to bed just after 7:30 and was sleeping peacefully before 8:00. He rested well through the night and we are getting ready to head for the hospital. Thank you all for your continued prayers.

It's getting close!

Today we got our call from Riley Hospital letting us know for sure what time to be there for surgery. We had originally been told the surgery would be around 12:00 or 12:30 pm, but now it has been moved up. The surgery is now scheduled for 7:30 am and our arrival at the hospital is to be 6:00 am.

Explanation of the surgery.

Many of you have asked what TJ's surgery entails. This is how it has been explained to us. TJ will be given a gas (with choice of scents) to put him to sleep. TJ then will be placed face down on the operating table. Dr. Smith will open up the back of his head, remove a small, 3 1/2 by 3 1/2 cm. piece of bone, use an instrument to shrink the tonsils, push them back up where they belong, and insert a piece of synthetic dura to seal this area. This will allow proper room for the brainstem and spinal column. She will then sew him up with dissolvable sutures. After the recovery room TJ will be taken to ICU for a day. The next day he will be moved into a regular room. Hopefully he will be able to go home on Thursday, November 20. If you have any questions, please don't hesitate to ask!

One week until surgery.

T.J. is starting to get a little more nervous about the surgery. It is becoming more of a reality to him now that it is only a week away. Please pray for peace and acceptance for him. He knows this is something he has to go through, but is starting to get scared. Thank you all for your continued prayers and good thoughts.

Bradford Woods

T.J. just got back from three days at Bradford Woods with his 5th grade class at Neil Armstrong. He enjoyed going on a night hike, an all day hike, learning new songs, and getting to know his classmates better. One of his favorite parts was the skits that the staff put on for the kids. We were really glad that T.J. was able to go on this trip. He only had some mild headaches and a nosebleed during the trip. He had a great time!

T.J.'s Diagnosis

On September 17, 2008 we took T.J. to see Dr. Gilbert due to severe headaches he had been suffering. At that time Dr. Gilbert believed that T.J. was suffering from migraines. Due to him awakening with headaches the doctor felt we should rule out anything else by having a CT scan. So, on Thursday, September 18, 2008, we went to St. Francis in Mooresville and had the scan done. The next evening I received a phone call from Dr. Gilbert that T.J. had what appeared to be a cyst or mass at the base of his brain stem. We needed to wait until Monday morning to hear from a neurologist what the next step should be. Talk about an incredibly long weekend! On Monday we were told that an MRI would be necessary to give more detail of the area. On Wednesday, September 24 we went to Riley Hospital for Children to have an MRI of the brain. This procedure lasted about 20 minutes. T.J. laid very still and did a great job during the MRI. I received a phone call the next day from Dr. Gilbert stating that T.J. had a Chiari Type I Malformation. He informed me that this was a congenital condition. I knew nothing about this, so I immediately went to the school nurse and we did some research together. What we found was somewhat reassuring, as was the phone call I received ten minutes later from Dr. Jodi Smith, a neurosurgeon at Riley Hospital. Dr. Smith explained that a Chiari Malformation is when the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination. Our next step was to get an MRI of the spinal column and then to see Dr. Smith for a surgical consult. This took place on October 22. The MRI showed a restriction of the flow of cerebrospinal fluid and also the beginning of a syrinx. A syrinx is a fluid filled cyst encapsulated in the spinal column. After the MRI we went to see Dr. Smith. She is awesome! She examined T.J., talked with him, and explained what the procedure would entail. She was very detailed and told us everything to expect. We decided to go ahead with the surgery, which is called a Chiari decompression. Surgery is scheduled for November 17, 2008 at Riley Hospital for Children.