Tuesday, February 23, 2010

CAT Scan is OK!

If you missed the last post, Jess brought Katelyn to the ER last night as she noticed that the fontanels of Katelyn's skull felt harder last night. This can be a symptom of shunt failure. While they arrived at 7:00, they weren't seen until 11:00. The doctor ordered a CAT scan. Instead of sedating Katelyn, like they had for previous scans, Jess was able to hold Katelyn still enough to perform the scan.

The good news is that the scan did not show any evidence of fluid build-up in the brain and that the shunt was functioning properly. Katelyn will have a follow-up appointment at the Brea clinic for this afternoon. While the reason for the hardening of the fontanels is unclear, it was comforting to know that the shunt continues to work properly.

Monday, February 22, 2010

Trip to the ER

I wanted to let everyone know that Jess has brought Katelyn to the ER this evening. She noticed that Katelyn's fontanelles (parts of her skull) had become a little harder, which can be a sign that the shunt is not working. As a precaution, she has taken Katelyn to the ER to be evaluated by a doctor. An update will be provided as soon as we find out. Pray that nothing is wrong and that Katelyn is fine.

Thursday, February 11, 2010

Update From Home

It's been a few days since my last post and I'm sure many of you are wondering how Katelyn is doing at home. Well, a couple days ago, Katelyn had weighed a little less than she did when she was discharged and the doctor was a little concerned about this. But Katelyn has regained the weight and she is 7lbs 8oz again. She continues to eat well. Her head has steadily decreased in size to 37cm - which is down from the high of 40.5cm just before the surgery. Pray that this trend continues until her head is proper size.

Katelyn will be working with an occupational therapist who will do stretching exercises and other exercises to help her function normally. However, the earliest available appointment was a month away. The doctor wanted her to begin therapy within 2 weeks, if possible. Pray that an opening will become available.

On Monday, Katelyn will be seen by a doctor of hematology to evaluate her and look at her blood test results. We hope that all the blood work will turn out normal. Thanks for your continued prayers...

Sunday, February 7, 2010

Super Sunday Pictures

Here are some pictures from today and a few from the last few days. The yellow on her head is just iodine. Katelyn is finally home!After the surgery:

Katie with her oldest brother Casey. This was the first time Casey has seen Katelyn as he was not old enough to visit her at the hospital.
Katelyn with the boys.
Katie with Mommy.
The Jeanblanc Family together at last!

Katelyn is Coming Home!

Great News! Katelyn has been cleared to come home. Her parents are on their way to take her home now. The neurosurgeon felt that she was making good progress and that she would be fine at home. While her wound had bled a small amount, the doctor felt that everything was healing as expected. Her head size continues to decrease and she continues to eat well.

While all of you are probably watching the Super Bowl, the Jeanblancs are finally going to be home together! Praise God!

Saturday, February 6, 2010

Progress After Surgery

Katelyn continues to recover well from the surgery. She started eating again last night. Her head size has decreased half a centimeter to 39.5 cm, which is a good sign. Katelyn underwent the surgery a few hours after another baby had the same surgery and that baby is still on a ventilator. Katie was off the ventilator within half an hour after surgery! (Pray for that other baby!)

Katie's parents hope that she can return home soon but the nurses will not give a time, although there is some indication that it will be on Monday or Tuesday.

With all of this going on, there is still room for celebration - Katelyn's older brother, Johnny, turns 2 tomorrow. Johnny hopes that Mommy and Daddy can bring home his sister for his birthday so that they will not be away so often.

Friday, February 5, 2010

Katelyn's Surgery

This morning, Katelyn underwent shunt surgery to relieve the pressure in her brain. She went in a few minutes after 10:00, and the doctor came out to talk with the family about 11:40. He said that the surgery went smoothly, that the shunt fit properly, and that there were no immediate complications. Everything went as planned! We have already been able to see Katelyn, as she is back in the NICU. She has incisions at the back of her head and in her upper abdomen. Her temperature was slightly elevated but now seems to be coming down. She has not woken up fully yet and we hope that she will be able to eat soon.

This morning was particularly stressful for Jess and John as the doctors discussed an alternate surgery that could be performed just before Katelyn was going to go in for surgery. Jess and John had learned about this procedure last night after speaking with the neurosurgeon that would be doing the operation. This doctor shared that he was recommending this surgery. Jess and John did a little research after learning this and were preparing themselves emotionally for this new surgery. The surgeons, however, had not fully collaborated their decision. After they had, they stayed with the VP shunt process because the ETV procedure was not as successful for infants under six months and that VP shunt surgery was the better option. After this consultation, Jess and John feel like they made the right decision - and the doctors both recommended they stay with the shunt.

Katelyn will be in the NICU until the doctors decide she is able to go home, probably within the next 2-4 days. She will then have scheduled follow-up appointments and possibly home visits by a nurse. Pray for her recovery - that she will not have an infection develop, that she won't have a seizure, and that the shunt can function properly.

Thanks for the prayers! Today was a big day and we're glad that it seemed to go well!

Thursday, February 4, 2010

Possible Surgery Change

A last minute update on the plans for tomorrow. Jess and John were informed by the neurosurgeon that there was an alternative surgery that he said Katelyn was a good candidate for. The surgery is called endoscopic third ventriculostomy (ETV). Basically, this surgery involves drilling a hole between the ventricles on the left and right side of the brain so that they are connected and can better regulate the pressure. The benefit is that if the surgery is successful then Katelyn would not be shunt dependent and this could allow the pressure in her brain to come down. The downside is that the surgery does not have a high rate of success - decreased pressure in the brain - and that she may still need a shunt later on. The good news is that ETV seems to be slightly less risky than VP shunt surgery. The real concern is whether this surgery will be enough to allow Katelyn's brain to recover. That might not be clear for another 3-6 months.

The neurosurgeon suggested this surgery just this evening. As Jess and John had been emotionally preparing for the shunt surgery, this change threw them off. They spent the last 2 hours searching the web for more information on this surgery and found a lot of contradictory statements about the surgery. Yet, while some of the first information about the surgery had been negative, they were feeling a little more peace about it after continuing to do research, as they found that the risks were fairly equivalent to shunt surgery and that while this is not always effective, they always can have a shunt placed later.

Jess and John will meet with the neurosurgeon at 9:30 to discuss the risks and benefits of this surgery and the surgery will likely occur following this consultation (probably around 10 or 11). Pray for them as they decide whether to give consent for this surgery. Pray for Katelyn's health through the surgery. May God watch over our precious daughter.

Surgery Tomorrow

Katelyn's shunt surgery is scheduled for tomorrow morning at 9:30. The shunt will help treat her hydrocephalus. The downside of shunts are that the person generally needs to have the shunt for the rest of their life - they are considered shunt dependent. The upside is that the shunt will help control Katelyn's brain pressure so that it can start returning to a more healthy shape.

Pray for 4 things:
1) That the surgery proceeds without complications.
2) That the shunt functions properly.
3) That no infections will develop.
4) That Katelyn can start eating again within 12 hours after the surgery.

Shunt surgery is fairly routine. However, these complications occur at a high rate. Pray also that Katelyn can come home by Monday. This diagram will help you get a better feel for what a shunt is and does.

Wednesday, February 3, 2010

Meeting with Pediatric Neurologist

Today, Katelyn's mom and dad met with the pediatric neurologist who will be following Katelyn after her shunt surgery on Friday (the time will either be 7:30 or 9:00 AM). This doctor is already planning to evaluate Katelyn in six months for her follow-up. This doctor stated that the stroke was likely an aneurysm that ruptured. If that was the case, there was nothing that could have been done to prevent this from occurring.

Jess and John were able to see pictures of Katelyn's brain from the ultrasound, MRI, and CT scans. He showed them that the ventricles were considerably larger than normal. The ventricles are essentially pockets of fluid, with no brain tissue in that area. The ventricles expanded as the result of the bleeding in that area, pushing the brain tissue in those regions out.

The long-term question is, first of all, will Katelyn's brain return to a normal shape. In order to develop normally, her brain will need to partly grow back into the area where the ventricles currently are. While Katelyn's apparently normal functioning is a good sign, it is not surprising to the doctor, who pointed out that the areas of her brain that control her gross motor movements was not affected as greatly as other areas. That means that we cannot conclude that Katelyn will develop normally just because she is functionally well now.

The doctor suggested two things to pray for as Katelyn's shunt surgery approaches. The first is that the shunt functions properly. This means that the shunt does not get clogged, the shunt remains in place, and that the shunt keeps the CSF at a good pressure level. The second aspect of the surgery to pray for is that there will not be an infection. These problems could mean that the shunt would need to be replaced.

Katelyn is now 7lbs, 6oz - she is growing and continues to eat well.

Tuesday, February 2, 2010

Clarification on Diagnosis

I wanted to clarify an earlier post where I said that Katelyn would likely be diagnosed with cerebral palsy. The doctors have not yet identified a cause for her stroke. Apparently, it is not completely unusual to find out that there is no "cause" of the stroke or that a number of things went wrong in synchrony. Hopefully, if there is any chance that another stroke could occur, doctors will be able to know how to prevent further it. However, generally the infant does not have another stroke.

The doctor suggested that Katelyn might be diagnosed with cerebral palsy. That was one guess at a possible outcome. Cerebral palsy simply means that Katelyn would have difficulties with movement: she may have difficulty with fine motor movements, she may have difficulty with walking, or she may be wheelchair bound. All of these would classify her with cerebral palsy. However, it remains possible that Katelyn could also simply develop a learning disability or that she may develop fairly normally. At this point, it is almost impossible to know. On the one side is her good current level of functioning. On the other side is the severe nature of the stroke. Again, it is impossible to know how this will affect her. We continue to pray for her healing and for God's will in all of this.

Monday, February 1, 2010

No Spinal Tap Today

Today Katelyn was tentatively scheduled to undergo another spinal tap (aka lumbar puncture or LP). However, the lead neurosurgeon decided not to perform the spinal tap. Considering that Katelyn's proteins levels were already low at the last spinal tap, this doctor felt confident that her protein levels would have come down enough. The protein levels largely reflect the amount of blood that is mixed in the CSF fluid. If the protein levels are high, the shunt could get clogged and would then need to be replaced. Several websites have noted that repeated lumbar taps are not a very effective way to treat hydrocephalus and that, if the hydrocephalus does not resolve after the first draining, then a shunt is the better option.

Katelyn's shunt surgery is still tentatively scheduled for Friday. Apparently, the surgical team that would perform the shunt placement is also performing another surgery on Friday, so they hope to perform the two surgeries on the same day. A shunt is basically a drainage tube that has a valve that shuts off when the proper fluid pressure is achieved. The tube goes into the ventricles - the empty space in the middle of the brain (see picture) which is filled with CSF - and drains down into the abdomen. All of the tube is under the skin so the shunt will not be visible. More information on the procedure will be forthcoming.

Once again, we're thankful that Katelyn continues to function well: no vomiting, no seizures, and that she still has been eating well.

P.S. The brain you see here belongs to Katelyn's uncle Curt. The views are from the side, from the front, and from above. Red arrows point to the ventricles in each picture.