The Real World: Detroit

Today was a long, hard, but good day. We started the morning off with family photos in downtown Saline. We wanted to get some good pics of all of us and some of Dominic before his head is shaved and has a horseshoe shaped incision with 36 staples in his head. I’m hoping we got some good ones. Mitchell wasn’t all that cooperative and Dominic was crabby; it was hot, but Melanie, our photographer, was wonderful. We’re anxious to see them in a couple weeks. You can preview a few of them here.

We then met with Dr. Sood early this afternoon. It was a good meeting, but also scary and everything is starting to feel very real. We reviewed his PET scan and found out they are NOT doing a “functional” hemispherecotmy, they are doing a real, “anatomical” hemispherectomy. They are pretty much removing the entire left side of his brain, not just disconnecting it. After his case was discussed at the neuro conference last week, they feel strongly that this is the best option. In someone as young as Dominic and with his condition (Cortical Dysplasia), keeping a portion of the brain in there is riskier because it’s harder to make sure all connections are severed. There is a higher risk of seizures returning if they do not remove the entire hemisphere. This freaked me out and came as sort of a surprise, but I understand and it makes sense. If they can’t cut all connections and the seizures return, they would have to do another surgery. This eliminates that risk. There is still a small chance that seizures could return, if there is some dysplasia in the right hemisphere that cannot be seen on MRI’s or PET scans at this point. But it’s a small chance and if they do return, they are usually easily treatable with medication.

Dr. Sood took us through the surgery, from anesthesia to cutting out a part of the skull, to brain mapping (electrodes on his brain), to the actual removal of the occipital, frontal, temporal and parietal lobes. They will keep the central part of the brain that includes the thalamus, brain stem etc. But the majority of the left side of his brain will be removed and the empty cavity will eventually fill with spinal fluid. They will reattach his skull with screws (which we’ll be able to see/feel under his scalp for awhile...creepy) and staple his scalp back together. The surgery will take about 6-7 hours, assuming there are no complications. He will go in around 7:30 am for anesthesia and will probably be out of recovery around 5-6 pm. He will be in the ICU the first night and next day. His eyes will probably be swollen shut and he’ll be pretty irritable, but he should be able to drink from a bottle by day two. He’ll then be moved to a regular room on the neuro floor and if everything goes according to plan, he may be out within 7 days. They may start PT while he’s there or they may move him to inpatient therapy for a couple weeks or they may let him go home and do therapy in Grand Rapids, it sort of depends on how he does when he wakes up. He will have a drain at the incision site to drain excess fluid. If for some reason it’s not draining correctly he may need a shunt put in. If that is the case, he’ll be in there another 3-4 days.

As far as life after surgery, Dr. Sood is not sure what will happen to his right hand/leg. He’s not sure if he’s able to move it and use it (although not well) because of the part of his left hemisphere that IS working or because the right hemisphere has taken over. This is something we’ll have to wait and see about. Although, Dr. Chugani believes he will use his hand and have similar function to what he has now. Not right away, but eventually. I guess we’ll have to wait and see. Cognitively, he’s not that far behind and because the seizures are hurting the right side of this brain, the good side, stopping the seizures will only help him cognitively. I started to get sort of worked up and Dr. Sood could tell I was getting nervous and overwhelmed. He came over to me and patted me on the arm and said, “Calm down, Mom. Everything will be okay”. I of course, being the ‘mother bear’ I am, told him “this is not like getting your tonsils out, you are cutting out half his brain!”. He turned to me and said, “you can’t think about it that way. Part of his brain isn’t working and we’re just removing that part before it can hurt the part that is working”. I know he’s right and I know this is the best decision and only option left for him, but I can’t help from freaking out. I have to remind myself that he does these all the time and has seen great success. In his 30 years, he’s only lost one patient after a hemispherecotmy and it was from an infection unrelated to the surgery. That eases my nerves….a little.

Our meeting with Dr. Chugani went well. We have to wean Dominic off Klonopin before the surgery because of the withdrawal effects. Klonopin does not come in IV form, so if he doesn’t get the meds orally (which he can’t the day of surgery) he will go through major withdrawal (similar to alcohol withdrawal) and they would have to sedate him. It’s dangerous to sedate him after this kind of surgery because they won’t know how he’s really doing. So, we start the wean tonight. Last time we tried to wean him off it, he had 15 seizures in a matter of hours. So, if that happens again we have to give him Diastat (the rectal med) until the seizures stop. This is the part where I stop, breath, and say ‘only one more week of this’.

Dr. Chugani is wonderful. He’s positive, he’s friendly and he makes me feel comfortable. He examined Dominic and thought that although he’s hypotonic (low muscle tone), he’s pretty much on track cognitively. He believes with a lot of PT and OT, Dominic will do great. He’s going to keep Dominic on Keppra and Vimpat when he leaves the hospital and probably within 6 weeks cut that down to just one med – AMAZING. I have no idea what it will be like to only give him a couple meds a day instead of ten! When we were leaving, Dr. Chugani told us we were making the right decision. There are no other options left for Dominic and we are doing the best thing possible for him. That made me feel good. Sometimes I question whether putting him through all this is best for him, but I now know that it is.

So, today was good. We feel comfortable and ready. But we were also faced with some realities that I tend to ignore. Even with all the seizures, all the doctors, all the meds, and all the physical therapy – there is still a part of me that thinks Dominic will be ‘normal’. That he’ll run, and jump and play sports and get A’s and B’s in school. In reality, Dominic will walk with a limp, no matter what. Even if he never has this surgery, because of his right-sided weakness, he will have a limp regardless.  He will never be able to use his right hand/fingers to do things that require fine motor skills. He might not even be able to move his fingers again. He may not drive because he will lose his peripheral vision on his right side. All of these things are hard to hear as a parent. Even though I’ve been told it before, there is a part of me that always thinks he will overcome the odds. I mean, look how much he has overcome so far? When he was diagnosed with IS at 2 months old, I was told kids with IS are very hard to treat, the majority are mentally retarded, some never walk or talk or go to school or recognize their family members. And look at Dominic. He smiles, laughs, babbles, rolls over, is starting to sit up and is using his right side – despite being sedated by 5 seizure meds and continued seizures. He is a little fighter and champ and no matter what doctors tell me, I still believe he will do whatever he wants to do in life. As scary and radical as this surgery seems, it is the only choice we have. If we don’t do it, he will NEVER walk, or talk, or develop normally. He will have seizures the rest of his life and be on multiple medications that don’t work. I couldn't live with myself if I didn't do everything possible to give him the best shot at life. So this is our reality. A reality I never could have imagined for him when I looked into his little face for the first time the day he was born nearly10 months ago. It’s amazing how much can change in one year. But if he can continue to endure, so can we.

Our prayers for the next seven days will be that his surgery goes smoothly with no complications. That he does not need a shunt. That he has no issues with infection. And that he would wake up and have lost no function on his right side. It seems like a lot to ask for, but we know our God hears our prayers. We have seen miracle after miracle with Dominic and we know that God has big plans for our little boy. The last few nights, as I’ve laid awake in bed praying, I have imagined myself physically handing Dominic over to Jesus. Dominic is not mine, he was given to me on the day he was born to care for and nurture. But ultimately he belongs to his Father and on Tuesday morning I will give him back to his Father and give all of my worries, fears and expectations over to Him. There is an amazing peace that comes from knowing that God is in control. Because I know that no matter what I do or think or worry about, He’s in control of everything. If something happens or if Dominic gets sick or needs a shunt or can’t move at all – God is in control. He has given us the strength we need so far and I have no doubt that He will continue to sustain us; no matter what is to come.