Pictures!! :)

I know that everyone is interested in updates, but in the spirit of chronologicalness, I will start in the middle of last week. But, I will tell you up front that everything went well with Everett, and he is at home safely.

Last Wednesday, Dad and Frances came into town to watch Everett. They took him over to his Uncle Chris's house to have a fun day of playing.

They had a small ostomy issue, and supply problems (skin barriers + Texas heat = not a good idea), so they called Grandad Lynn to the rescue (have you noticed how Grandad Lynn just seems to be everywhere? :) ).

Of course, when we went to pick him up, Daddy noticed that Uncle Chris had Rock Band, so they just HAD to jam a bit. :)

Overall, I am told that fun times were had by all...now it is Uncle Chris's turn up at bat for the grandbaby factory. :)

On Thursday, Everett hung out with Mommy at work. He mostly slept a whole lot, and that was good because work can be kind of boring for little babies. :)

We went to preop on Friday in Fort Worth. Everyone was very nice and we left feeling like many of our questions were answered. When given a choice, Everett chose pineapple/coconut for his smell to fall asleep to. :) Sandy beaches here we come.

On Saturday, Everett went to Grandad Lynn's while Daddy went to work and Mommy went to Baptism Preparation Class. Meemaw came over to visit and everyone stayed nice and warm on that chilly, chilly day!

On Sunday, Mimi Candy came over to spend the night since we had to leave so early on Monday morning.

We left the house at 4am Monday morning so that we could get to the hospital in time for check-in. Mommy and Daddy and Mimi got to spend a couple of hours in the pre-surgery room with Everett before they took him to the back. Everett was in high spirits, and not at all upset that he had not eaten. The benefit of being at the hospital so early is that Everett did not have to skip any meals before surgery because his last meal of the evening is 8pm, and he doesn't usually eat again until 8am. I love that he is on a great schedule and sleeping through the night! :)

They took him back around 7:30am, and then the waiting began. Honestly, the time passed fairly quickly. They were really good about calling us every hour in the waiting room from the OR to update us on his progress. Around 12:30p, the neurosurgeon came out and talked to us about the surgery.

Everything went well. It turns out that Everett's cord was not tethered after all. What was perceived as "thickening" of the phylum was actually thickened arachnoid. The arachnoid is part of the sheath around the nerve endings. It was not compressing the nerves, but on the MRI it looked as if the phylum was thickened. The Dr. went through each individual nerve ending and found them all to be floppy. He is not sure what caused the thickening, but assures us that it is no longer an issue. Additionally, he tested all of Everett's muscles, and they all appear to be functioning normally in regards to nerve connectivity. This includes his sphincter muscle as well. So, all in all we have good news!

Waiting for Everett to get done with his MRI so that we could finally see him was EXCRUCIATINGLY long! But, the time finally came when our little man was wheeled out into his room on the pediatric floor.

He got a private room, and I was pretty jazzed about that because I had packed earplugs and everything in case we had a roommate. :)


Overall, Everett just slept a lot in the hospital. He certainly slept a lot more than Mommy did.

On Monday night, the IV in his arm failed, and we had to put another one in. The only good vein (as we have previously learned) was in his head, so they had to put his IV there. This time, they gave him a little protective cap that was just too cute. I have a picture of it on my cell phone, but I am having trouble getting everything on this computer to cooperate, so if you see me out and about and you really want to see it, just let me know. :)

All in all everything went well. Everett has been on Tylenol with codeine since Monday afternoon. It seems to be working fairly well. He still has little bouts where he could be in pain or just fussy, but they are few and far between. I tend to think they are more just plain old fussiness because he is still supposed to remain on his back as much as possible, and I think he finds that boring.

I am so glad that we got this done now. I cannot imagine trying to keep him down if he were even a couple of months older!

We have a follow up visit in a month where they will basically just check his incision to make sure that everything healed up well. The doctor expects no complications at all.

So, 2 down, 3 more to go. Tentatively, he will be getting his hernia surgery and his chordee repaired around Feb. 12 depending on the schedules of his general surgeon and urologist.

Sorry for the long update. I will try to update more as information becomes available.

xoxo
Margot

Still no photos

Well, life has been busy in Lil Man's world, so photos have not been being uploaded in a timely manner. Sorry. But, I thought that an update would be more important at this juncture than photos.

As Bachan said in the last blog, Everett will be going in for surgery on Monday, January 21, 2008. We will travel for pre-op tomorrow afternoon, and then they will operate EARLY Monday morning. They will be cutting the phylum to release a possible tethered cord.

I spoke with the neurosurgeon today, and he said that he spoke with the two other members of his practice to get a feel for what they thought about Everett. They all seemed to agree that this was the best time for this surgery. Although there is not an obvious site of tethering in the MRI (which means that it is possible that they will go in and there will be no tethering at all), they feel that it is better to operate now rather than later. The reasons are twofold. One is that it will prevent any further damage from occurring if the cord is, in fact, tethered. Once damage is incurred, it is either irreversible, or requires more surgeries to repair, so prevention is the best option here. Secondly, he will have a better recovery at this age. Since he is not sitting up on his own yet, he will not object as much to lying on his back for the days required of him. Also, since he has a colostomy, there is no danger of fecal matter getting back into the incision and infecting it. All in all, this is the best time to get this done. I will post more once we are out of surgery.

Then, here is how his surgeries will work out. After he heals from his spinal surgery, he will go in for surgery to repair his hernia. The doctor prefers to repair both sides at the same time to avoid having to go in again later.

About 3 weeks after his hernia repair, he will go in to have his pull-through done. Due to his lack of coccyx and shortened sacrum, the doctor is unsure how successful this operation will be. We are hopeful, but we will not know anything until around potty training age. His colostomy may also be moved at this time since he has a high IA, and the doctor is unsure of how much colon he really has to work with.

Then, we will do a bunch of dilation, and once he is dilated to the proper width, he will have the surgery to reverse his colostomy. Then, until potty training age, at least, we will have the normal poopy diaper situation. :) Who knew that we would be looking forward to poopy diapers so much. Someone please remind me of this when I go to change the second one. :)

All in all, Everett does not seem concerned at all about the upcoming surgeries. :) He is his normal, happy, stubborn, hard-headed self. :)

So, please keep us in your prayers this upcoming week. And I will keep you informed as much as I can. I will also try to teach Dylan how to post photos so that you are not deprived of seeing how huge our Little Man has become. :)

xoxo
Margot

Jan 12 update, no photos

Mom, Dad & Everett have been busy since they returned from California so there hasn't been time to post. Brother Goose had so much fun at doggie hotel that he just wanted to sleep for the first couple of days he was home.

Everett had a wonderful time on New Year's Day meeting Bachan's side of the family. They thought he was just grand. He also met his new cousin Nadia, born on November 4th. He was introduced to new people, sights and smell. The next time he's in California he might be old enough to sample the food.

On January 9, Everett met his neurosurgeon... now that's how many doctors? The diagnoses of caudal regression was confirmed. He has a very mild case that shouldn't cause him any problems, though they will continue to monitor his development. His spinal cord is just fine. His sacrum is a little short so the doctor said he'd have to make sure to tell the surgeon if he has back surgery when he's an adult. They start counting the vertebrae from the bottom and could miscount if they aren't made aware.

He does have a tethered spine and is scheduled for surgery on January 21. The neurosurgeon says it's not a complicated surgery. Everett should be out of the hospital after a day or two. He can't have any other surgery done for 2 weeks afterwards. The doctor is not concerned about this operation healing as much as it getting contaminated & infected if the "pull through" is performed too early. Everett will have another MRI done after surgery, while he's still under anesthesia.

On January 10, Everett had his 4-month checkup. He received a normal immunization shot and proceeded to have a reaction to it (same shot combo he got earlier with no reaction). That meant a trip to Urgent Care. They were able to bring his fever down by the time he left, but he was so upset he got a hernia. The UC doctor was able to push it back in and told Margot to contact Everett's general surgeon and pediatrician to let them know.

Well, that's about all for now. Mom will update as she gets a chance.

Bachan