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.
Callista
Showing posts with label myelo clinic. Show all posts
Showing posts with label myelo clinic. Show all posts
Monday, April 15, 2013
Friday, March 22, 2013
Spring Break (AKA busy!)
The first week of April I am on spring break, but it will be anything but a break. We tried to cram all of Callista's appointments into this week so I wouldn't have to take any days off work. In other words, not much of a break, but we will be getting stuff done!
Tuesday she has a full head and spine MRI with sedation followed by a neurosurgery follow up. They're just doing this routinely to take a better look than the quick MRIs that don't give as good of a picture. Specifically, her neurosurgeon wants to look at her ventricles (which have been the same or better on each MRI) and her Chiari malformation how that it's been a year since her decompression. They will look at her spine as well, I assume to get a baseline if she ever starts having tethered cord symptoms.They will give us the results after she wakes up when we go to neuro clinic so at least we don't have to wait and worry.
Then Thursday we do WIC renewal and Friday is clinic day. We will do the usual clinic with a renal ultrasound again to check her kidneys. They have also been stable ever since her vesicostomy. It should be an uneventful visit.
Callie has been using a kidwalk in therapy for trial and she loves it. She puts a little weight through her knees and ankles. You can tell she enjoys standing up. We will be starting the process to get one of our own. The ortho guy will be at our appointment next week to observe her during therapy and write recommendations for bracing. We're one step closer to getting our baby girl on the move :)
Tuesday she has a full head and spine MRI with sedation followed by a neurosurgery follow up. They're just doing this routinely to take a better look than the quick MRIs that don't give as good of a picture. Specifically, her neurosurgeon wants to look at her ventricles (which have been the same or better on each MRI) and her Chiari malformation how that it's been a year since her decompression. They will look at her spine as well, I assume to get a baseline if she ever starts having tethered cord symptoms.They will give us the results after she wakes up when we go to neuro clinic so at least we don't have to wait and worry.
Then Thursday we do WIC renewal and Friday is clinic day. We will do the usual clinic with a renal ultrasound again to check her kidneys. They have also been stable ever since her vesicostomy. It should be an uneventful visit.
Callie has been using a kidwalk in therapy for trial and she loves it. She puts a little weight through her knees and ankles. You can tell she enjoys standing up. We will be starting the process to get one of our own. The ortho guy will be at our appointment next week to observe her during therapy and write recommendations for bracing. We're one step closer to getting our baby girl on the move :)
Friday, January 4, 2013
Clinic Day
Clinic this morning went much better than expected. There was so much positive attitude I was in shock! Usually we are stuck listening to complete strangers tell us what our daughter can't and will not do. This time, it was praise after praise. I am always terrified of MRIs and ultrasounds. You just never know what is going to show up.
Today's MRI showed that her ventricles are even smaller than the last time they scanned. You could visibly see more brain matter in today's imaging than in the ones from July. We love our nurse practitioner from Neurology so much as she took the time to sit down with us and go through image by image and tell us what they meant.The renal scan (kidneys and bladder) showed no changes from the scan they did in September. So her vesicostomy is working and no more damage is being done to her kidneys. The urology doctor said her vesicostomy looked great as well.
The physical therapist was impressed with her new found head control, tummy time skills, and core strength. She told us that on her notes in September, she was very limp and had no head control, so this was a huge step forward. She gave us suggestions on how to work on sitting up, so we will be starting those ASAP! (And grandpa will be building her a therapy bench lol). We go back again in three months, and hopefully she will have enough upper body strength to qualify to get her first set of leg braces!
My proudest moment of all today was getting to share the fetal surgery experience and benefits with neuro (the awesome one). Callista performed well, wiggling her tiny toes and responding to touch on her feet. I hope that they start sharing the option with the soon-to-be SB moms they consult with. We were their first fetal surgery baby and we're FINALLY proving it is worth it.
On a side note: I bought some things for Callista's first birthday party today. WHAT?! Yes, that made it real for me. It's coming in just a few weeks and I have no idea how our very first year with our daughter has flown by so quickly. I am so excited to share the big day with family and friends.
Today's MRI showed that her ventricles are even smaller than the last time they scanned. You could visibly see more brain matter in today's imaging than in the ones from July. We love our nurse practitioner from Neurology so much as she took the time to sit down with us and go through image by image and tell us what they meant.The renal scan (kidneys and bladder) showed no changes from the scan they did in September. So her vesicostomy is working and no more damage is being done to her kidneys. The urology doctor said her vesicostomy looked great as well.
The physical therapist was impressed with her new found head control, tummy time skills, and core strength. She told us that on her notes in September, she was very limp and had no head control, so this was a huge step forward. She gave us suggestions on how to work on sitting up, so we will be starting those ASAP! (And grandpa will be building her a therapy bench lol). We go back again in three months, and hopefully she will have enough upper body strength to qualify to get her first set of leg braces!
My proudest moment of all today was getting to share the fetal surgery experience and benefits with neuro (the awesome one). Callista performed well, wiggling her tiny toes and responding to touch on her feet. I hope that they start sharing the option with the soon-to-be SB moms they consult with. We were their first fetal surgery baby and we're FINALLY proving it is worth it.
On a side note: I bought some things for Callista's first birthday party today. WHAT?! Yes, that made it real for me. It's coming in just a few weeks and I have no idea how our very first year with our daughter has flown by so quickly. I am so excited to share the big day with family and friends.
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