Follow Up MRI

It's been almost five months since Callista had her second decompression surgery. Tomorrow is the day we find out if it actually worked. We are scheduled for a full brain and spine MRI bright and early. They will be checking to see if her syrinx has gotten smaller and reviewing her chiari malformation. Please pray that these things look better. If they do not, there are only more serious options for us to consider and I cannot imagine putting my sweet girl through another surgery so soon.

We don't have any reason to believe that this surgery did not work. Callista is doing so much better lately. She is happier, stronger, and more awake than she ever was before. But we've never had an MRI turn out well, so my mommy nerves are a little on edge. Plus, it will be our first experience with a new neurosurgeon, although not our new neurosurgeon. I just want things to go smoothly tomorrow so we can move on to our happy Christmas celebrations. The uncertainty of everything is what bothers me the most. With spina bifida, none of us are ever sure of anything. Another mother put it so beautifully in her blog that there is no black or white for us. We only have gray. No one is able to tell us how life will look like a year or two down the road becuase every single one of our children are different, no matter the lesion level, the surgery options, etc. You have to rely so much on waiting and seeing. Wish us luck!
 

In the real world, equipment is slowly accumulating. We were so excited to purchase the chair for Callista that she is sitting in a few months ago. It helps give her just enough support to sit up but be able to relax if she needs a break.

 A few weeks ago we also finally got a stander for the little monster. Because Callista cannot bear weight on her legs, she doesn't get the opportunity to strengthen those muscles. By using the stander, we can encourage muscle building, bone growth, and trunk control. It also is helping a lot with her head. She loves being in it, in case you couldn't tell by the huge smile on her face! On the 30th, we take her to get her final fitting for her leg braces. These braces don't mean she can walk, but it will help her hips and her foot stay in proper placement. I look forward to posting a picture of those too :)

To all our followers, I wish you a very Merry Christmas. I hope you all get to spend time with your family and loved ones and have a blessed holiday. <3

Pain, Pain, Go Away!

Callista had her second decompression Wednesday. If you know Callista, you know this came with some drama. What was supposed to be a 5-7 hour surgery turned into a 14 hour surgery. Nothing necessarily went wrong in the surgery, it just proved to be a little more difficult than initially expected.

We brought her in at 6:30 for surgery prep. By 8:30 they took her back for anesthesia and to place her IVs. At 9:30 they called out to tell us they were struggling to get lines in and the surgery still hadn't begun. Around 10:30 someone came to tell us they started shortly after our last phone call. The nurse was so good about calling us with updates every hour and a half or so. But after the seven hour mark, it was a little stressful waiting on those phone calls. Each time we were assured everything was going smoothly, the doctor was just taking his time finding the right placement.

Finally around 11:30 the surgeon came out to say it was done and he thought it went well. I am forever thankful it was HER surgeon that worked on her, I cannot imagine a new person taking on such a huge procedure when they did not know her. Dr J. claims this was Callista's going-away present to him. He had to remove bone that had grown back from her surgery when she was two months old. She also had a lot of scar tissue which took some time getting through. He could not pinpoint the spot where the fluid was blocked so that also took more time than necessary. He removed a cyst she had in her brain that had been there since her last decompression as well. Finally he was able to place the stent and close.

She had a CT scan shortly after surgery and it showed the stent was in the right place. They kept her on the breathing tube since she had been under for so long and it was 1:00am. She was able to be taken off the next day. She had a fever all day Thursday so they pumped her full of antibiotics to fight off any possible infection. It finally broke later that night and she was feeling a little better. Her pain was controlled okay until this morning.

Somehow her pain meds were not given around the clock and she was about two hours late on one. She woke up screaming in pain, she held her breath four times, and scared a nursing student to death. Once she got caught back up, she's been happier today. She is awake more and trying to talk and play, but wears out easily. She enjoyed sitting on Papaw's lap today after several days of not being able to be cuddled. She's got pressure ulcers all over the sides of her face from being in the halo for such a long time. She also has a lot of swelling from the surgery and fluids she's been given. We tried to start her food but she couldn't handle it. Hopefully tomorrow is a better day! We hope to be discharged by Monday but she has to eat and have adequate pain management with oral meds.

We won't know if this surgery did what we needed for several months (as long as 4-6 months). The MRI yesterday showed smaller ventricles, maybe that's a good sign!

Eight.

Eighth time's a charm, that's how the saying goes, right? Third time, you say? We missed it!

Callista will have her eighth surgery on the 17th. It will be another decompression surgery. She had one at two months old and it is the most serious surgery she's had other than the fetal surgery. Needless to say I am one nervous mother. Last time it took about six hours, but they did a bronchoscopy with it. We don't know how long this one will take. I did my best to find pictures that (sort of) explain what is going on with Callie's brain.

Callista's syrinx is much longer than in this picture, it travels pretty far down her spine. A syrinx is when there is spinal fluid in the length of the spine in a space it isn't supposed to be. The larger blue spot in this picture is the syrinx and the skinny blue line is what it's supposed to look like. On her MRI, there's a big black spot that points to a blockage, possibly caused by scar tissue from her brain being so compressed when she was born and the first decompression surgery.

This picture is an in depth look at what a decompression surgery actually does. Hers won't necessarily be the "textbook" surgery like this shows since it's the second time she's been through it. We are so lucky in the fact that her neurosurgeon rescheduled another surgery so that he could do hers and still be around a few weeks after before he moves to another hospital out of state. I am so relieved. This procedure is a huge undertaking and I wouldn't trust anyone else to do it as well as he will.

His plans are rather loose since he is unsure exactly what he will find once he opens her up. The tentative plan is to use the same incision, perhaps lengthen it to adjust for growth. He will open the dura and look at the scar tissue to see how much he can remove. Any bone regrowth from the last surgery will be removed and depending on how compressed things look, he may remove bone to widen the opening. He does not think he will need to remove more bone but it is still on the table as a possibility. Then a stent will be inserted to bridge the gap between her ventricle fluid and that "black spot" so fluid can flow freely through the spinal cord.

In writing, it seems straight forward, but there are many unknowns until he can see it. There is also a slim chance that this repair could also help her vomiting issues but we can't be certain. We are wishfully thinking it helps though!

Please pray for my sweet little girl and our family that we can get through this smoothly and have a quick recovery. It's such a major surgery that we hoped we'd never have to go through again.