Sunday, April 28, 2013

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!

Wednesday, April 24, 2013

Well, THAT was Fun....

We did our first PICC dressing change tonight. Here's how it's supposed to go: wash hands, undress baby, put masks on any adult within range as well as baby. Create sterile field, remove bandage, wash area with antiseptic swabs, replace bandage.

How it really goes: was hands, undress baby, put masks on mommy and daddy, mommy holds mask over screaming baby as best as she can while daddy retrains baby's swinging arm. Baby screams and screams and holds breath due to restraining. Try to locate the damn supplies you KNOW you brought in while trying to keep a sterile field, maintain holding mask over intermittent breath holding baby Daddy struggles to put new bandage on flailing arm. Finally get to take off masks and comfort baby. Endure glares from said baby for the rest of the evening.

Needless to say, I hope it's out before the next change is scheduled to happen! Now I am trying to cuddle on the couch and make up with my littlest love, who is clearly going to hold this against us for a bit. Her shunt revision is scheduled bright and early Friday morning. It should be a short surgery and a pretty short recovery time if all goes well. Please keep Miss Callie in your thoughts. And a big THANK YOU to the folks who have ordered from our Amazon link! We appreciate the help :)

Monday, April 15, 2013

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.

Wednesday, April 3, 2013

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!!