The Surgery

This is probably the number one question I get when talking to people.

"So, what are they going to actually do during the surgery?"

One of the things that is so amazing about Cook Children's Hospital outside of the amazing staff & facilities is the medical equipment. I know that seems like I strange thing to mention because you would think that all the children's hospitals have the same stuff. However, they don't. Apparently a pretty awesome donor or group of donors made it possible for Cook Children's to have what is called an IMRI Machine (this video shows how the machine actually works. Its really cool!). This Intraoperative MRI Machine cost about 10 million dollars to acquire and there are only 200 of these in the entire world. I will explain more about that in a minute.

On Monday January 30th we are scheduled to go in for Henley's pre-op visit. At this time we will meet with Grace who is Dr. Roberts assisting physician and will be in the OR with Dr. Roberts during the surgery. She will go over everything with us and we will then meet with the anesthesiologist. The anesthesiologist will look Henley over with a fine toothed comb and make sure she is able to handle the surgery. If they can not find any reason to postpone the surgery, then they will take pre-operative blood work and give her a super powerful dose of an antibiotic. The reason for the antibiotic is to make sure it is already in her system before they start. Infection from a surgery like this is a major concern so throughout Monday and Tuesday she will get a total of three doses of this medicine to help her body fight off any potential infection. 

Tuesday morning we are scheduled to arrive at the hospital at 5:30 in the morning. The surgery is scheduled to start at 7:00 am. Henley will be given a "cocktail" which is basically a medicine that they give about 30 minutes before they are going to take them away from mom & dad. This medicine is designed to ease the separation anxiety and it also has an amnesia affect on the child to help them not remember any of that time before surgery. In the three times that Henley has been under anesthesia, I have only seen that medicine do its job once. So lets all say a little prayer that she has no problems leaving our side. Once they are back in the IMRI Suite they will give her a mask and put her to sleep. Given the fact that she has done her fair share of breathing treatments, this should not be a problem at all.

Once Henley is asleep they will get her set up for the surgery with the halo around her head and set just like they need her to be. Here is where the cool part comes in. I mentioned that she will be in what is called an IMRI Suite. What this is is a huge, completely sterile operating room that is basically two rooms in one separated by a garage door. Once they have Henley set up they will open this garage door and out on a giant track in the ceiling will come this huge MRI machine. It will come directly over Henley and while she is asleep it will take an MRI of her brian as it sits right then and there. So before they make a single cut, they will know exactly what they are looking at. (We would appreciate specific prayers for this MRI to show that everything is normal and surgery is not even necessary).  After the MRI they will take the machine back out and the garage door will close. At this point they will make the incision which will be about 4-5 inches long and stretch from the nape of her neck up the center of the back of her skull. Because of the length of her hair and being able to pull it into pig tails they are not going to have to shave her head! I know its a silly thing to be concerned about, but I am thankful that her head won't have to be shaved.

Once they have made the incision they will remove part of her occipital bone around her foramen magnum. The part they will remove cannot be felt by touching the back part of the head.  They will also remove the back part of her 1st cervical vertebra.  The sides of the vertebra are responsible for stability, so removing the back part should not cause any structural issues.  Both of these techniques are designed to help create more space in the back of her skull and relieve the pressure that is being put on her brain. After they have done this they will begin the long and delicate process of thinning out the dura mater. The dura mater is the covering around your brain. It is very important because this is what keeps all of the cerebrospinal fluid intact. The reason they will be thinning out the dura is to hopefully provide a little bit more room for the brain. Henley's brain is so crowded at the base of her skull that they are needing to make room for it so that it won't be pressing up against her brainstem. After they have finished the process of thinning out the dura they will bring the MR machine back into the operating room and take another MR scan of her brain to see if they have done enough. If they feel like they have, they will begin closing her up at that point. This would conclude "Plan A" of the surgery. If they find that the fluid is still not able to flow as freely as they would like then they will make the decision to move forward with "Plan B" which will be much more invasive.

"Plan B" would include actually having to cut the dura of her brain and sew in a graft, which acts as a patch.  This will allow the dura to expand even further and create more space.  The reason they try to avoid this option is because it significantly increases the risk of complications.  For one, she will have to be admitted to the ICU for the first 24 hours post-op.  Also, recovery will be more difficult and she will have to spend an extra couple of days at the hospital.  Complications could include increased pain, nausea, and leakage of cerebrospinal fluid.  So, needless to say, we do not want anything to do with "Plan B".

As far as recovery goes, we've been told to plan on being in the hospital between 5-7 days.  However, depending on how the surgery goes, this will determine how long the stay is and how difficult her recovery will be. For the month after the surgery she will have to be closely monitored and she will have a "two feet on the ground at all times" policy when she is awake. No climbing, jumping, swinging, sliding, stairs by herself, etc. As most of you who have two year olds know, this will most likely be the most difficult thing for us to manage. Henley is without a doubt out our most adventurous child and our natural thrill seeker. She will also not be able to have her head submerged in water for at least a month. I believe we will be able to wash her hair, but keeping her from "swimming" in the bathtub is also going to be a challenge.

As soon as we are home and settled back in from the surgery ECI (Early Childhood Intervention) will start coming to our house for all of Henley's different therapies. As of right now she is scheduled to have 5 different therapist coming to the house. They will have a nurse coming to check in on her, a physical therapist, and a occupational therapist that will be working with her cognitive skills, fine and gross motor skills etc. There will be a speech therapist and a counselor with IMH (Infant Mental Health) coming to make sure that she is coping well. In addition to that we will start back up with her feeding therapy that we will have to travel out of the house for. Needless to say its a lot to wrap our brains around, but as always we are just taking it one step at a time.