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

Move It Move It!

Our little princess is one tough cookie! I cannot imagine how she felt before decompression #2. The progress we have seen has been amazing. There's not really any other word for it. Even though she does not get another MRI until December, I already know what it's going to say in my heart. I know the syrinx is either gone or shrunk significantly. We have a NEW KID. As I write this, she is sitting in her bouncy chair pressing away on her musical flowers. Most parents would be ready to smash the thing by now, but hearing that sound (albeit annoying as it is!) means so much to me. Because a month ago she could have cared less. She didn;t want to play with toys, she didn't move her arms. Yet here she sits, twirling the flowers, making them go, and entertaining herself for the first time in her life. She is trying her hardest to sit up even though she still has another week to go before she's allowed. And best of all, we see leg movement all the time. Coming from little to no movement to frequent kicks and wiggles pretty much makes me cry. No lie there. I had almost resigned myself to the fact that my daughter would never walk, even a little. It doesn't even really matter whether she does or not as long as she's happy and independent. But this gives me so much hope for her mobility. I cannot wait to get her braces so we can really see what she wants to do. The food trials are going so much better than we could ask for. She wants more, more, more! Her five trial bites are never enough for her. And her language is improving too, she is developing new speech sounds that we've never heard her say before and she even throws me a bone now and then by saying mama. Occasionally. Dada is still the word of the day, every day!

Mommy is back to work and while I am sad to leave my baby girl, I am happy for all the blessings my family has received over the last couple of months. So many good changes have happened and we're looking forward to the first day of the rest of our lives as we work to get back on our feet. I don't want to jinx it, but we are starting to see the light at the end of the tunnel.

Home Sweet Home

It is truly a compliment to be trusted by your child's doctors. It's nice to hear from professionals that you're doing a great job and they consider you "educated" parents. We finally got to come home today after spending a week in the hospital. Even though Callie was still throwing up, they had such faith in me as a parent and caregiver that they let me take her home anyway. I am so glad we did because she has been doing great. Maybe she just missed her special chair! Me, I just missed my shower, bed, couch, TV, dog, couch, etc. Okay, I think I missed a lot more than her... Mostly I think we are both looking forward to a night of uninterrupted sleep.

We still have to work on getting her feeds back to baseline but otherwise she has made a super recovery. I was worried about her neck strength after such an invasive procedure but she's already moving her head and trying to hold it up. She's not allowed to do anything strenuous until we have our follow up appointment next week, but I'm so proud of her and how resilient she is. These kiddos go through so much and come out smiling, it's just amazing.

Before leaving today, we had "the talk" with her neuro team about transfer of care. We've made a decision and I pray it's the right one. After next week, we will be under a new neurosurgeon and the thought makes me quite nervous. She will have another sedated MRI in 3-6 months to check on the status of her syrinx. Our current doctor thinks this should take care of the issue but if it doesn't, we will come up with the next course of action which could be tethered cord release or shunting her spine (no thanks to either of these, please!)

I know it's not a very interesting blog post, but I wanted to update everyone on how she was doing. There wasn't enough sleep in the world for my brain to work any harder.

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.

Change and Clarity

Change (Verb) Make or become different.

There's so much to say about one little word that can cause so much turmoil or so much celebration. We pray for change, dread change, make things change, and deal with change that is forced upon us. Sometimes we have control over what changes and other times we don't. Change is sometimes a blessing that is immediately visible to us, while other instances of change are blessings in disguise. Change is all these things, but it's also just one thing. Change is what you make of it. No one else but you can decide how you handle it and what you decide the value of it is. What brings on all this insight? Why, changes of course! Not to worry, Princess Callista is still being her sweet little self, but change is occurring in our lives. Two big things. Neither of which I am thrilled about but it's not a choice and we will make the most of it. Callista's neurosurgeon called Monday and informed us he will be moving to another hospital at the beginning of August. He will be there to read her full MRI in July and help in planning what to do about her syrinx, but if she needs surgery, he will not be the one to do it. The thought of a stranger cutting into my daughter makes me ill. But these guys are professionals, they do the same thing our neurosurgeon does, and they work for one of the best Children's Hospitals in the country! And I've heard such great things about both doctors we have to choose from so we can't go wrong in dealing with this change. One very helpful SB mother has me swayed as she shared stories of how their neurosurgeon cares for her son. And a positive is we still get to keep our favorite nurse practitioner. We realized doctors come and go, but we just didn't want it to come so soon. We get comfortable, we feel certain, and we build trust only to have to start all over. But it is what it is and we will keep moving forward. The other change is a bit more personal, and the details haven't quite been worked out. My job situation is changing and it's time for us to decide what is best for our family. It's one of those changes I talked about, that are forced upon you and you must make it whatever you need it to be. I needed it to be a sign, and it truly was a big one, a wake up call to say the least. Things will get hard for us financially, but my husband is ready to step up to the plate while I take a step back and do some soul searching. I can't foresee what will happen in the time between now and Fall, but again, i want to make of it whatever I can. One thing I've learned in the last two years is that even though society gives the impression that you must put others first, if you neglect yourself and your needs you're not doing anyone any favors. Here's where the clarity part comes in. Clarity (Noun) Clearness of thought or style; lucidity: Let's face it, we all need some clarity in our lives! Wouldn't it be nice if every time you were faced with an option some omnipotent voice would clearly state "Choose the bacon burger for lunch today". Granted, our situation is a little more serious than choosing between a chicken club and a burger, but I have to admit the voice choosing for me would be quite helpful. There is the saying that everything is not black and white, but the gray area is so hazy. When we get into the gray area, we lose our clarity and gain self doubt. I wish I was more spontaneous, willing to jump without looking or thinking (sometimes!), but I am an over thinker. I will think about something for days, weeks, even when it's over and nothing can be done or changed. But in this instance, I am letting it all go and leaving it up to prayer for clarity and I will be guided to the one and only choice that is right for us. I will not have doubts about the choice made. I will not have regrets one way or the other. I will be the spontaneous jumper! I just want to feel at peace with myself and my environment and unless I let go, I'll never achieve my goal. Here goes nothing, or everything depending on how you look at it :) I also want to give a quick Thank You to all of the wonderful people assisting us with our benefit coming up July 28th. Every day, I am in awe and just plain baffled by the outpouring of love and support. I am looking forward to seeing many of you there. We love and adore you!

Shunt Revision

Callista had her shunt revision early Friday morning. Other than dragging everyone out of bed at 3:30 in the morning, things went smoothly. They took her back at exactly 8:00, and the surgery lasted around two hours. We expected it to be a little shorter than that, but the doctor decided to do a little maneuvering of her shunt tubing as well as replacing the shunt. He said her old shunt was "sluggish" and some fluid pressure did come up around it when he opened her up. Before, he was 50/50 that this would fix her syrinx and now he is 60/40. Not much of an increase, but we will roll with it! Dr. J said the CT scans looked good and the catheter is in the spot he wanted it to be. We go for a wound check in two weeks, and a follow up limited MRI in six weeks. In about 12 weeks, she will go for a sedated MRI again to see if the syrinx is getting any better. If it is, we continue to wait. If it is not, we discuss other options for surgical intervention.

Callie woke up nicely from this surgery (it's amazing what the right size tube does for her, huh?) and only needed tylenol to manage her pain. We spent the night on the neuro floor and were released around noon yesterday. She is pretty much back to her old self, laughing at everything and very alert. We just have to deal with the post anesthesia yuck. The poor kid's stomach can't take it! She has tummy trouble for three to five days after she gets put under, no matter how long the procedure is.

In good news, Callista's 2nd Annual Benefit has a date and place: Profit's Park on July 28th. The time is still undecided. We will begin collecting donations for door prizes and auction items now. I am so excited to be able to do another benefit and be able to give back to the spina bifida community that has been such an amazing support system!

Three Letters: UTI

What a bummer! Callista is admitted to the hospital with a UTI. She has been vomiting since her MRI April 2nd, but we attributed some of that to her adverse reaction to anesthesia. Then we changed her formula to something for older children around the same time. So the symptoms could have been due to many things. But apparently it was a UTI. I am quite a bit disappointed it got this far considering I brought it up to urology at our clinic the first week of April. I told them I had concerns about it and it was brushed off. When will they learn that moms know best?

As for now, we will be in the hospital at least until tomorrow, but maybe more depending on what kind of bacteria is causing her infection. This also sets back scheduling the shunt revision. I haven't heard from the team how long we have to wait now, but it's too dangerous to do a surgery when there is infection in the body. The last thing we need is a shunt infection to go along with it. We have several neurosurgeons on the same page now regarding how to proceed with the syrinx. A large pocket of fluid is in the center of her brian and the catheter is barely in the pocket. Hopefully once the shunt is fully functioning again, it will clear up all the extra fluid making its way down her spine.

I shared on Callie's facebook page as well, but wanted to post here too... We have joined the Amazon Affiliate program. To the right, there is a link to amazon. If you ever shop there, you can go through Callie's link and a percentage of your purchase will go into her medical account. It costs you nothing! Please consider using the link in your shopping endeavors :) We use these funds for equipment that insurance won't cover, as well as saving for braces, etc. since only one set gets covered in a certain time period.

When Life Gives You Lemons...

Squeeze them into the face of the one who have them to you! Oh wait, that's not how that saying goes... Oops.

Well, we've just been handed a whole basket of the suckers as of yesterday. Her MRI was supposed to just be routine. They tried a tube too big for her first and couldn't fit so they had to go to a smaller size. They informed ENT and of course whenever they get involved, things go crazy and get blown out of proportion. They did a bronchoscopy which showed nothing. So instead of being outpatient we ended up staying the night in the PICU. They said she had a hard time breathing after those things getting shoved down her throat (uh, are we surprised?). She was back to her normal self in no time as soon as everyone stopped messing with her.

Then we got news from the MRI. My poor baby is going to need another surgery. Her MRI showed that a syrinx has developed all along her spine. This is fluid where fluid shouldn't be. There are three main things that would cause this. One: her shunt isn't functioning at full capacity and instead of her head swelling, the fluid is being pushed into her spine. Two: the fluid is still blocked somewhere at the base of her skull. Three: she has a tethered cord. Thankfully, the first one is the most likely indicator which as the easiest fix. It's preliminary but our neurosurgeon came in this morning to say that a shunt revision is most likely the plan. If that doesn't work Callie will have to undergo another decompression surgery or a release of tethered cord, although he is doubtful it's tethered cord.

We are really hoping the shunt revision helps, because another brain surgery is huge... A blow like this is hard to take since we thought things were going so well. She is making progress (however small) in pt/OT and for once life was going okay. We get lemons practically thrown at us every time we turn around. Sometimes the events in life that aren't so great outweigh the ones that shine. My husband and I are trying so hard to not let this happen. It just gives you a lot to think about. I feel like noting the disclaimer again that these types of problems don't happen with every SB kiddo, we just seem to keep getting the worst of the outcomes.

Once things are a little more certain I will update everyone. As always, we appreciate all of you following our journey, those who share our blog, the loving comments we get on our facebook group, etc. Each view, ad click, and use of the search bar also contributes a small amount to Callie's account and we are so ever thankful for that as well. <3 We can't get through this without you and your good thoughts. We LOVE you!!