Chiari Malformation II

On Thursday Trinity was seen by Dr. Gilmer. She checked her shunt and was very pleased with how it was pumping and how Trinity looked. This was also the appointment that Dr. Gilmer was supposed to review Trinity's MRI. After reviewing there were several areas of concern that were noticed, some of which were more urgent than others. The MRI showed the Chiari Malformation to be quite apparent and quite severe.

Just so you are understanding what Chiari Malformation II is here is a brief description of it from a book that we have. It is a difference in the structure of the brain involving the lower brainstem, upper spinal cord, and the lowermost portion of the cerebellum. About 85-90% of children with spina bifida have this malformation. Only a small percent of children, however, show symptoms and problems that eventually require surgical management. When the Chiari is present, the brainstem and cerebellum are pushed down and compression may occur due to lack of space. In addition, the fourth ventricle is elongated and enters the cervical area of the spinal cord. This may block the normal flow of CS fluid and increase the compression on the brainstem. It also results in increased intracranial (within the skull) pressure or displacement of CS fluid into cysts in the spinal cord. Some symptoms that Trinity has been showing is upper extremity weakness and she tends to gag when she is eating.

This would mean surgery right away. Due to Dr. Gilmer taking a two week vacation and already having a full surgery schedule, Trinity is tentatively scheduled for the 27th of Aug. The procedure consists of Dr. Gilmer taking a generous portion of Trinity's skull on the back side of her head where the skull meets the vertebrae. She says that it is important to take a large amount so the surgery will only have to be performed once. It is probable that as young as Trinity is her skull will partially grow back. This will relieve the pressure that is being applied on the stem of Trinity's brain, which is causing her spinal fluid to be restricted and nerves to be pinched. There is a certain amount of risk that is involved this surgery. Anytime a procedure is done so closely to the brain there is a risk of damage. There are also a number of large blood vessels that are located in this area and a blood transfusion is probable. There are things down the road that Trinity could face with having Chiari Malformation II, but most of them we will not know for sure until she gets older (walking, hearing, speech, etc...).

Secondly the MRI showed that Trinity has a tethered spine. When the surgery was performed to both close Trinity's spinal column and her skin on her back the two healed well, but as I understand it they grew together. It will not be until Trinity starts to grow and walk that we will be able to understand how this will effect her, or if it will at all.

Lastly, Dr. Gilmer can see where Trinity has scoliosis. She says that this is not uncommon at all with spina bifida children. She says that time will tell whether or not surgery will be needed to correct this problem also.

This is all a lot of information, but hopefully you understand what to be praying for. This is a lot to digest. When we think of all the risks and Trinity having to go through another surgery it makes us sick to our stomachs. When we found out that Trinity had spina bifida we didn't expect half of the things that we have faced in the past couple months. Sometimes I ask God "Why?". I will admit that the last couple days that question has been going through my mind a lot. I spent some time tonight going through some past posts and it pretty much brings me to tears. I can't believe all that Trinity has faced in her short life. I am really asking you to get on your knees and pray for our little girl. Pray that God would bring healing to her body and that if this surgery is what he wants for her that he would give Shannon and I some peace about it. Pray that Trinity would have a speedy recovery and that this would fix what needs to be fixed and not cause anymore damage. Shannon and I could really use your prayers also. It is a lot to have on your shoulders when you have to make decisions that involve your child's life. Please pray that we are making the right choices with Trinity.

7/24/08

Today we see Dr. Gilmer. She will talk to us about the MRI and check her shunt. I will be sure to update you tomorrow on how our appointment went today. Here is a picture of Trinity's head after her surgery. She's doing really good!

Update

Sorry for the delay, but things have been kinda busy around here. Trinity is home and doing great! She got to come home on Thursday. She still has some pain, but it is usually at night. We catch her putting her left hand up next to her incision and rubbing it, we are pretty sure that is were the discomfort is coming from. She's really a different girl and seems so much happier.
This week we have the privilege of having Kayla Jansen at our house. She flew in last night from Iowa and will be staying with us until next Sunday. We are really excited to have her here!
Trinity has an MRI scheduled for tomorrow at 8:40 am. They will have to give her general anesthesia so she don't move during the testing. They said it can take anywhere from 2-3 hours. This will help Dr. Gilmer see how bad the Chiari is. I will let you know how this goes. I will also update you on our appointment from last week.
Thanks again for the prayers, we can really feel them!!
Love~ The Arthur's

Shunt Revision

We just wanted to take some time and update everyone on our current situation with Trinity. We are currently at Beaumont Hospital and Trinity has had surgery and is now in the Pediatric Unit. Yesterday we had a doctor appointment with many different doctors at the Spina Bifida clinic. They were concerned with her shunt and requested that a CT scan be done. After having that done Dr. Gilmer found that her ventricles were 2-3 times the size they were at birth. Shannon and I got a phone call yesterday requesting that Trinity come in right away in the morning for a Shunt Revision. We feel very greatful that we had the appointment yesterday and that the doctors noticed this. God knew what he was doing when he scheduled that appointment! If this would have gone on much longer Trinity could have ended up with too much pressure on her brain which can result in brain damage. She really was not giving Shannon and I any reason to be concerned, but they thought she probably would have in the next couple days. Basically the shunt is no longer in the ventricle so they need to go in and replace the catheter that will go into the ventricle(if any of this is making any sense to you guys). Her head has basically grown in size causing the catheter to fall out. After surgery Dr. Gilmer also found that the shunt had some blockage which required it to be replaced. Please keep our baby in your prayers. She is having some discomfort and pain. Trinity is also sharing a room with a 16 year old girl that had scoliosis (spelling??) surgery. Please pray for her also as she is having a lot of pain.
As of now Trinity will be here overnight. They will recheck her in the morning and go from there.
We will keep you updated on how things are going over the next couple days. We will also spend some time this weekend or next week updating you on our doctor appointment yesterday. It went really good and we got a lot of information.
Love~The Arthur's

Neurosurgeon Appointment

Last week Trinity was seen by Dr. Gilmer-Hill (neurosurgeon). She had a concern with a few things. Trinity has been choking when she eats, her soft spot is kinda full, and she is losing some upper body strength. With that being said she requested to have an MRI done of her head and spine. She is about 99% sure that she has the Chiari Malformation II and would like to see how severe it is. The soft spot can be her shunt or it could be the cause of the Chiari. We don't know for sure what this means and what they will do to fix this. Next week we will meet with all the doctors from Children's in Detroit. They will also have access to the MRI and we can get a second opinion. Dr. Gilmer-Hill still has many connections at Children's and will work with the doctors there. We are still not sure when they will do the MRI, we were hoping to have it done this week, but because she has to have general anaesthesia, there are a few more steps to the process. Patience is something God is really teaching me through all of this, something I lack!! We will definitely keep you posted on the MRI and the doctor appointment next week.
On another note, we got to go to Iowa last weekend for the fourth!! Are we crazy, probably, but it was a good time and we love spending time with our family and friends. (Gas is cheap, ha ha!!) The girls did really good on the car ride there and home.
Trinity also started cooing (spelling??) this week. It is the cutest thing and there are times she will go on and on like she is trying to carry on a conversation with us. It feels so good to see her smile and giggle after everything her little body has been through. As a parent you hate seeing your child in pain, something positive is nice for a change.
I love these two pictures. Shannon went fishing on Lake Huron the other day and took these pictures.