Wednesday, June 24, 2009

Appointment with Professor

Our visit with Professor went very well. "No growth" was a wonderful to hear. "I've followed some cases like this for 30-40 years - no growth" was very encouraging hear!

I will never let her wear flip flops to another appointment with Professor. He said, "Why do you wear those? They are not safe!" Dianne, his nurse and wife, said, "Maybe she goes to beach!" I think they like her. He asked her if she was going to be a doctor. He told her it would be good if she "became doctor." Oh how she loves Professor!

Today we saw ACH ophthalmologist Dr. Corning. Before her 2nd surgery, she had grade 3 papilledema in her left eye and grade 1 papilledema in her right eye(there are 5 grades). When they discovered the papilledema is when they decided to perform the emergency revision. Today the papilledema was all but gone in her right eye and her left eye was much better. There should not be any permanent damage and her vision is 20/20! She has a follow up appointment next week to check the papilledema and do a visual field test. Dr. Corning said if the tumor was going to affect the vision, it would begin affecting her visual field first.

Things seem to settling down! We are enjoying VBS this week and looking forward to going to the "The River" (Hunt, TX) next week to spend the 4th with some dear friends. We asked the kids if they wanted to go to Disney World or the River and they chose the River. We are all ready to relax for a few days! Enjoy two of our favorite River pictures!

Friday, June 19, 2009

Neurosurgery Appointment Today.....

Real quick! NO GROWTH!!!! Next MRI in 6mo or 1 year. Details later....we are blessed!

Tuesday, June 16, 2009

MRI Today

June 16, 2009

Today was Mary-Kaylin's UAMS MRI appointment. Professor wants her MRI's done at UAMS because they have the 3T MRI (ACH has an 1.5T MRI). She was amazing! We originally were going to be in and out of there in a couple of hours however, we ended up spending the whole day doing MRI's and she never complained. I added it up and she spent over 2 1/2 hours in the MRI. If you've never been in or around one, I can't even begin to describe how loud they are and the different noises they make. Perry Jon is at his 2 week guard camp so Memu (Mary - my aunt and mother's sister) was with us for MRI's 1 & 2. Tata (my mother) was with us for MRI 3 during which MK watched the ENTIRE Finding Nemo Movie! She had to lay perfectly still the entire time!

We were so happy to see Dr. Rudy when we came out of MRI #1! He was suppose to be off today. I don't know what we would do without him. He's been such an incredible source of information and processing-out-loud friend and listener. His sweet family has been so prayerful and good and understanding.

My favorite story of the day is the I.V. I had not picked up the lanocane (numbing medicine for the i.v. stick) prescription and we were going to wait and have it filled at the UAMS pharmacy. Mary-Kaylin said, "I don't need numbing medicine! I.V.'s don't bother me!" So, they took her right back and got started. She watched her nurse put in the I.V. and true to her CEO personality, suggested that another vein might be better than the one Nurse Natalie had chosen. Natalie explained why she chose the vein and MK was o.k. to proceed! She didn't even flinch or tense up. Amazing!

Between MRI #2 and #3 Uncle Lu treated us to lunch at MK's favorite restaurant - Mimi's Cafe. Then it was back to another part of the hospital to go into the newest MRI at UAMS that is able to do even more tests. Professor is going to have a lot of data on MK's brain!

Initial results indicate that things have NOT gotten worse and in fact, some things appear to be better! The edema (irritation around the tumor) is much better now that pressure levels in the brain are lower. Professor will give us more details on the tumor itself on Friday. Dr. Rudy says that sometimes once the edema has settled down and you can get a better look at the tumor, the tumor looks less serious. She does appear to be over-shunted (CSF is draining too fast) but her headaches have all but disappeared and she seems to have finally adjusted to the lower pressure for now. She wanted to ride her pony, Trigger, when we got home but I was exhausted! She said, "I think Trigger helps me get better. I'm glad Professor said I could ride." Wednesday we are going to go get pedi's and mani's and ride! That's what she said she wanted to do. She's earned a day of pampering for sure!

We will update the blog on Friday after the appointment with Professor Yasargil.

We are blessed!

Love, Michele

Mary-Kaylin is back in the swing of things. Nothing can keep her down for long!!!
Riding the Carousel at the Zoo
MK & Trigger

Straight A's!

Tuesday, June 9, 2009

Getting Better.....

Mary-Kaylin is getting a little better each day. She is still having headaches, although they are at least resolved with medication now. Dr. Raja called Chi Chi yesterday and they talked for a long time. He does not want her to have headaches at all or to depend on medication to get through the day headache-free. He is talking about changing out her shunt to an "adjustable shunt" -- this would allow them to adjust it as needed to ensure that the fluid is not draining too slowly or too fast. It would also allow them to adjust it if they know she will be in a situation where there may be dramatic change in pressure, like on an airplane or in the mountains. He wants to watch and see how she does for a couple of weeks before making that decision. Of course this would mean another surgery so it can not be made lightly. Please continue to pray for healing for Mary-Kaylin, and for wisdom for the doctors, Chi Chi and PJ to know exactly what she needs.

Thank you!

Monday, June 8, 2009

Update from Michele

I've felt for a couple of weeks that something wasn't right. Mary-Kaylin had had some out-of-ordinary complaints and symptoms. Last Monday (June 1st) I took her to her pediatrician and on Tuesday I took her to her to the neurosurgery clinic to see Dr. Raja who is following her shunt. Her shunt series (x-rays) looked normal and he wasn't concerned about symptoms she had been having.

Thursday morning she began having severe headaches and was nauseated and vomiting Thursday night. We went to the ER where they did another shunt series and CT. They told us the series looked normal and CT looked pretty much as it did post-op in March. They decided she may have a virus but told us to come back if the headaches and nausea persisted.

Friday was not any better and she became sick again. I was giving her oxycodone and advil however the headaches would not subside at all. We returned to the ER around 2:00pm on Friday. At that time they told us that her ventricles were slightly larger on Thursday's CT. They called in a ophthalmologist to look in her eyes and see if there was any evidence of pressure on the optic nerves. The evidence of pressure was there so they immediately scheduled her for emergency surgery. She had a shunt revision around 7:00pm. Dr. Raja replaced the proximal catheter that goes from the brain's ventricles to the shunt valve. It was not working properly. He said it was "sluggish".

It's been a struggle for her to adjust to the lower pressure and she had to stay in the hospital a little longer than expected. Sunday evening we brought her home! She's still having headaches however, the pain medication is working and that's a step forward for sure! She's getting better and stronger by the hour!

Her next MRI is June 16. We'll go see Professor on June 19 for the results.

Thank you for all of your prayers and support.


Sunday, June 7, 2009


I just left a visit with Mary-Kaylin. She had a much better night last night! This morning she ate bacon and a little oatmeal, and I took her a Strawberry Smoothie from far she has kept both down, and even went for a little walk. Doctors think she will stay one more day, but if she progresses throughout the day Chi Chi is hoping that they can go home tonight. Please continue to pray for a quick recovery and that this surgery will be a permanent fix for her shunt.

They did do a repeat CT this morning and should have results of that later--they will be able to compare with the previous CT to see if the fluid level has gone down.

Saturday, June 6, 2009

Saturday Update

Mary-Kaylin is still at ACH and still experiencing headaches today when she tries to get up and around. Today, the doctors have decided that the original headaches were being caused by a shunt malfunction--that "sluggish" catheter that they replaced. Now, the headaches are being caused by the pressure changes in her head as the fluid is now draining at faster rate. She will stay in the hospital until things normalize and she is able to function again without headaches--it could take one day or several days. Please pray that she will recover quickly so that she can go home.
Mary-Kaylin had surgery last night to check for a shunt malfunction. There are three parts to the shunt--a catheter that goes from the ventricles in her brain to a valve, the valve itself, and a catheter that goes from the valve to her abdomen. All three parts seemed to be working, although the catheter in her brain seemed to be draining somewhat slowly, so they did replace that part. Overall, the doctor feels like the shunt was working properly. This was good news, although it does not explain the severity of her headache.

She woke up at 3:30 this morning with a severe headache and still has it this morning. They are considering referring her to a Neurologist who specializes in headaches. No news yet on whether she will come home today or not.

Please continue to pray for healing for Mary-Kaylin.

Thank you!

Friday, June 5, 2009

Mary-Kaylin has been doing well since the last post, but has had a small setback today and was admitted back to ACH this afternoon.

Mary-Kaylin woke up yesterday morning with a headache and nausea. They went to the ED last night and she had CT that they initially said looked good. They thought that she just had a virus and sent her home. The headache has worsened today, and they now say that the CT from last night shows an increase in fluid in the brain from when she left the hosptial after her initial surgery. The shunt that is suppose to drain the fluid is not working properly. They are going to admit her for observation and to make a decision about another surgery. She may need a shunt revision. Please pray for healing and for wisdom for the physicians making this decision.