Out of the hospital!

Kaley was released from the hospital yesterday (Tuesday) afternoon! Yay!  Her temperature was down to 99.0 and the blood cultures and urine tests came back negative. Her chest x-ray was a little cloudy but okay for being so soon after surgery. The other labs were all normal. She's continuing to eat/drink/poop and started walking around without any assistance during PT. They removed the drain but had to put a suture in (ouch!). The pathology report from surgery verified that it was a fatty lipoma. With all this good news, we were on our way out the door, but did manage to get a picture taken with Miss Moo, the Texas Children's hospital cow.

Overall, yesterday was a pretty busy day!! We are happy to report that we are staying at the hotel for a few more days but should be returning to Kansas Friday afternoon. We just have to check in with the plastic surgeon on Friday to check the incision one last time!

Today (Wednesday), was a pretty quiet day! We hung out around the hotel most of the day except for a couple of trips to Sonic, and adventures to get food for lunch and dinner. Kaley is moving around pretty well. She doesn't like to sit for very long (sitting on sutures can't be very comfortable!), but overall seems to be healing up nicely. We're very excited to be heading home soon!

Monday Update

We finally got some rest last night! In the morning, Kaley was ready to get out of her crib and was HUNGRY! Always a good sign :). She started standing up and walking around a little bit.. She did well with her PT. With Rhys' help, they made turkey, colored, played in the kitchen, and rode in some cars. She continued to eat throughout the day, drank more, and even pooped (very exciting...). The pain seems to be getting better. They decided to leave the drain in due to increased drainage but it might come out tomorrow, it just depends on the amount on drainage. The incision looks great! She still has a temperature 99.7-102.5. They did a full work up with a chest x-ray, labs, blood culture, and urine culture to see if they can figure out what is causing the fever. The lab results are still pending. Pathology results from the surgery should take 7-10 days.

This evening, she continued to perk up, ate some fish sticks and guacamole for dinner with a special Halloween cookie from Nana. Kaley has made friends with most of the nurses as she cruises around in the cars and waves at everybody :). The goal for today was to eat more and walk around more, and we accomplished both!

Saturday: One Day Post-Surgery

Well, today was a bit of a restless day. We are still battling pain control, so they have increased the morphine dose. Kaley had a fever this morning of 102 but as of this evening, it is going down. She was able to drink (and more importantly, keep down) some apple juice and eat a few cheese puffs. They're still doing lab work every 12 hours, but that all looks okay so far. The drain has only minimal drainage thus far, which is a good sign. Kaley is definitely not a fan of her IV and almost successfully removed it herself once (recall: feisty). 

Big sister Rhys still has a fever today but is feeling better and colored a couple of pictures to decorate Kaley's crib with, which according to Kaley, was the highlight of her day :). Hopefully Rhys will be better soon so she can go visit Kaley as she's pretty sure Kaley really misses her.  

They're hoping that tomorrow the pain will be a little bit better so that Kaley can get up and move around a bit more.

Full Surgery Update

Here's a few more details: 

Overall, the surgery went well. They decided not to remove the hemangioma and just used it as a flap because it was too large/vascular. They were able to detether the spinal cord and removed most of lipoma. The neurosurgeon commented that the lipoma looked very interesting--it went through the dura and looked like it had a stem. We are still waiting on the official pathology report. Both doctors (neurosurgeon and plastic surgeon) were happy with the surgery.


The recovery went well with help from precedex. Apparently while going to sleep she was very "feisty" (no surprise there!) and kept trying to punch the circulator. So, they thought a little extra precedex when she was waking up would be good for all of us. She will not be sedated over the next couple of days as we planned because she has Factor V Leiden. They want her mostly flat for 24-48 hours. She did pee (yea!!!!) but is still vomiting :( and can't seem to keep anything down.


But overall, she seems to be doing well. They plan to pull the drain on Monday and discharge her on Wednesday, but we will be staying in Houston until Saturday so that they can keep an eye on the incision as most infections occur around days 5-7.

On a side note, Rhys had a fever today and spent most of the day at the hotel with Nana watching PBS and playing games. She seems to be feeling better tonight. 

Thanks for all the well wishes/prayers! 

On to recovery...

Kaley has been moved to her own room now and is doing really well. She's sleeping and throwing punches at anyone who approaches with a stethoscope :)

Out of surgery!

Kaley is out of surgery and doing well. She's in recovery with mom and dad now. We'll post more info later :)

In Surgery

After many dr's appointments and a trip to the aquarium, Kaley is in surgery. They took her back at 8:30am and expect it to last 6-8 hours. We will post updates when we have them!

Houston here we come!

We're on our way to Texas! Kaley has a few appointments and then the surgery will be on Friday, November 2nd. But until then, we're going to have some fun in Houston! Tonight: Trick-or-Treating!

Kaley's First Trip to Houston and Plane Ride

We made it to Houston, around Houston and back. We even had some fun, and lots of good food along the way! We were very lucky to have some wonderful accommodations from Kelli and James. We went to Hermann Park rode the train and Kaley played in the park followed by eating lunch at a cafe which Kaley decided Ketchup was good enough to eat all by itself. We even got some pool time in :) while Kelli and James napped, I think they were a little overwhelmed with a 1year old wondering/destroying their apartment!  We also met with the pediatric neurosurgeon he was in agreement with the MRI yes it is a lipomyelomeningocele and her cord is tethered which is what is causing the syrnix to get bigger, the short version is the spinal fluid is being restricted and is unable to flow up adequately therefore the more the lipoma grows the less fluid can flow freely therefore the syrnix also gets bigger. So the plan is by removing the lipoma the rest will resolve.  We scheduled her surgery for October 24. We will have to be down there two days prior for labs and to meet with a pediatric plastic surgeon (who will be closing the incision) and will plan to be there for 3-5 days after surgery.  While this plan is very overwhelming, I do feel very relieved to finally have it set. I have to say the staff at Texas Children's Hospital is amazing and we had a very good visit overall. Thank you to everyone for the positive thoughts and prayers. We could continue to use them over the next few months!

Riding the train around Hermann Park

Ketchup for lunch with a side of hamburger

Having some fun!!!!

Ready to go back to Kansas.........

Getting Ready for the trip to Houston

Kaley underwent and MRI in July and it was felt that a significant change has occurred over the last year and surgical intervention is the recommendation. While we have many amazing specialist here in Wichita, we have decided to go to Texas Children's Hospital in Houston Texas. While there have been many hurdles, this last week they called us with our appointment next week. While I was relieved to finally have it scheduled the planning part has been a little overwhelming. A few more bumps along the road but we seem to be on the up hill stretch. At least for now. My dad and I will be flying down with Kaley to see the doctor. Lucky for us Kelli has already figured out where we need to go, Baylor Medical Center is HUGE!!!! At least we will get to see Kelli and James while we are there :)
So lots of prayers would be greatly appreciated (especially for the plane rides and the other passengers)

Below is so information on Kaley's condition, she also has a lipomamyelomenigocele, and most likely has some teethering of her cord but there is no way to truly be sure of this until they are in surgery.


Syringomyelia (pronounced se-ringo-my-EEL-e-ah) is a cyst in the center of the spinal cord that is filled with fluid.
The cyst, also called a syrinx (pronounced se-rinks), can form anywhere along the spinal cord. It can get larger and longer over time. This puts pressure on the spinal cord. The pressure can cause symptoms. If not treated, it may also eventually cause nerve damage.

Syringomyelia in Children

Children who have other problems involving the brain and spinal cord often have syringomyelia too. Many times, these other neurological problems are present when the baby is born (congenital). Congenital problems that can cause syringomyelia include:

• Chiari 1 and 2 malformations
• Hydrocephalus
• Myelomeningocele
• Lipomyelomeningocele

Other childhood conditions, such as spinal cord tethering or a spinal cord tumor, can also cause syringomyelia.
Not all children with these conditions develop syringomyelia. But any of the conditions can change the normal flow of a child’s cerebrospinal fluid (CSF)

. The cerebrospinal fluid often collects inside the spinal cord to form a cyst.

Children can also develop syringomyelia later on in life. Conditions that may trigger the formation of a cyst include:

• Injury to the neck or spine
• Meningitis

• Tumors

Syringomyelia can also occur without a clear cause.