Meeting with the Neurosurgeon

Today, Josh, Theo, and I made the long drive to Peoria to meet with Theo's Neurosurgeon, Dr. Lin.

We were extremely confused when Dr. Lin told us last week that he didn't want to do the shunt surgery. And we also didn't understand why we were not told that Theo had the potential to have tissue loss (brain damage) if we waited until he was six months old to perform the aneurysm repair surgery. We felt that it would be best for us to go and talk with Dr. Lin to avoid any more miscommunications.

Dr. Lin checked out Theo and told us that we need to continue to watch his soft spot and if it gets hard or swollen then we need to call him immediately.

Josh asked Dr. Lin about the shunt surgery and why he didn't think it was necessary. He told us that shunts are used mostly for decreasing pressure in the brain, which is different then having extra fluid in the brain. Theo has extra fluid, but his pressure is fine so a shunt won't help right now. We brought up our concerns about his tissue loss and Dr. Lin told us that there's very little chance any more damage will be done to his brain and that he's seen kids recover "just fine" from similar situations.  He, and the other doctors, believes that the aneurysm caused the tissue loss so now that the aneurysm is mostly taken care of he should not have any more tissue loss or extra fluid building. 

After the Radiologist do their next surgery, Dr Lin will reevaluate Theo and see what he thinks the next steps are. Once the soft spot closes there can be increased pressure too so we need to watch for that too.

I then asked Dr. Lin why we weren't told that there was a potential for tissue loss when we were first talking about options for surgery. He said that they were more concerned with keeping him alive and that there was a much higher chance of him not making it through surgery if we did it when he was a new born. I understand their position, BUT we should have been told about all the risk ahead of time.

I then asked him why we weren't told about the tissue loss when his office called to give us the results of the MRI from 11/27. He said he didn't know why, but it was mostly because they were only looking at the ventricles and the aneurysm size and not anything else.

I get it. I really do. Their main priority was keeping him alive and I'm grateful for that, but they should have told us. They should have told us that he had the potential to have tissue loss if we waited to do the surgery AND they should have told us that the damage had happened when they saw the MRI. I know that kids can recover from tissue loss, but not all do. I'm scared for what is to come for little Theo.

I'm glad we went and talked with Dr. Lin in person. It's a long drive (almost 4 hours round trip) for a twenty minute conversation, but we need to be on the same page if we are going to understand what is the best course of action to take.

Is This What Karma Feels Like?

Today was a long, hard day. I can't even describe to you how it feels when a doctor tells you that your child had brain damage. I'm devastated, angry, and confused.

Theo and I made the long (and familiar) drive to the hospital in Peoria. Our first stop was in Zone 2 to get Theo a "fast MRI". This is when they take a few quick "pictures" of his brain. The pictures are a little fuzzy, but since all the doctors wanted to see were his ventricles (which are large), the "fast MRI" was sufficient. I like these "fast MRI" since they don't have to put Theo under anesthesia for it.

We had a couple of hours to kill before our next appointment so I fed Theo and then walked around the hospital while he slept.

After the MRI we went to met with our Neurologist, Dr. Avula. He told me that he read through Theo's records, which took a while, because he wanted to talk through everything and understand what I was feeling. We then looked at all of Theo's MRI's. He went through them one by one and told me what he was seeing. In the "fast MRI" that was done shortly after Theo was born, you can see that the ventricles and the brain matter look healthy, but the dilated Vein of Galen is very dominant. He then pulled up the MRI (the one they sedated him for) from November 27th. In this one you can clearly see the dilated Vein of Galen, the enlarged ventricles, and some damage to parts of his brain. I was devastated. I started to cry. Why didn't they tell me before? When I got the call from the Neurosurgeon's after his MRI in November they told me that Theo's "brain aneurysm has not dilated anymore, but he does have some extra fluid in his ventricles." They said they would continue to monitor him and he will likely have another MRI in February. There was no mention of the damage. None.

Dr. Avula then told me that he doesn't know how the damage will affect Theo. It is located in part of the brain that is responsible for his motor skills so Theo may never walk or talk, but he doesn't know for sure. We will just have to wait and see.

We then continued to look through his images. After that he decided to have a good look at Theo. He checked his reflexes and his motor skills before asking me about Theo's response to noise and other stimuli. He noticed that Theo's eyes show a delayed reaction. He will follow his rattle, but his eyes are a little behind. Dr. Avula then went back to the computer and pulled up the MRI. He showed me the part of the brain that would be responsible for that. You can see some damage. So Theo's wandering eye and other eye movements and delays are most likely neurological. 

After Dr. Avula's exam we talked more about treatments. I told the doctor that I was in communication with Early Interventions and we had someone coming to our home next week to talk with us. He said that was the that was a great way to go and they will be able to help him with physical therapy and other developmental therapies. If we don’t get accepted into the government funded program there are other private practices that we can go to and Dr. Avula knows of some great doctors we can talk to. 

Dr. Avula then asked me if I had heard of Sturge-Weber Syndrome. I told him that was one of the genetic disorders that the Geneticist were testing for. He said that genetic test don't always catch it and if we wanted to be sure we needed to do a biopsy of his Port Wine Stains. He told me that it wasn't necessary though. It didn't matter to Dr. Avula if Theo had the syndrome or not, he would treat him the same since he still has some kind of neurocutaneous disorder. He then told me that a side affect of hydrocephalus (and Sturge-Weber Syndrome) are seizures. He taught me what to look for (it’s not just the shaking like most people think) and to let him know if I see any signs of them.

Dr. Avula is so nice and had no problem answering all of my questions. I'm so glad he is on our team and is so willing to help Theo.

While I was talking to the Neurologist, Josh got a call from the Neurosurgeon, Dr. Lin, he said that he wants to wait to do the shunt surgery. We don’t understand why. I was under the impression that the hydrocephalus was causing the brain damage so why would we wait any longer to fix it? We have a lot of questions for Dr. Lin so we are meeting with him next Monday. 

Finally, we went and saw the Interventional Radiologist team. While I was in the waiting room I started sobbing again. A kind nurse took us into an exam room and then the IR nurse and RNP, Jessica, came in to talk with me. They hugged me and helped me talk through what I was feeling (Is this what Karma feels like? Is this my fault?). Jessica then told me that Dr. Fraser looked at Theo's "fast MRI" from today and he has his own concerns. Theo will have to have another procedure to completely fix the aneurysm. It doesn’t need to be done right away, so we are meeting with them in July to discuss the next plan of attack. They may have to add a few more coils or a type of glue to the aneurysm and there is a chance they can go in through the atrial side this time. Modern medicine is truly fascinating!

I am so grateful for our brilliant medical team (aka the "Brain Trust") and their willingness to take on Theo and all that comes with him (even if that involves a hysterical, sobbing mother). Hopefully we will get more answers on Monday after meeting with Dr. Lin and we can go from there.

Going back to the beginning of the post, I am devastated, angry, and confused. I can't help but wonder if this is what Karma feels like. Is this my punishment for all the terrible things I've done in my life? Is this the punishment for all those times I was rude, mean, or disrespectful? All those times I was a terrible friend or turned my back on someone who needed help? If so, why does Theo have to suffer through it? He didn't do anything wrong. It was all me. It was all my fault, not his. Does this poor child has to endure all of this because of my mistakes?

I knew being a parent would be hard, but I never expected this. I'm so lost and confused. I can't help but feel so sorry for Theo, but selfish thoughts jump into my head too. Are we ever going to be able to travel again? Are we going to have to miss all our upcoming family reunions? What about our family trip to Disney World in two years? Is it even worth going to? Will we just be a burden on the family? Will Josh and I ever get a date night? Who will watch Theo? Are we going to have to get full time help?

I think what is so hard is the unknown. They don't know what is going to happen. They don't know how his brain damage will affect him. We just have to wait and see. And I'm not a patient person.

Quick Trip to Wisconsin

Theo and I decided to make a quick trip to Wisconsin so we could visit Josh's family and meet Theo's new cousin, Braxton. We hopped in the car Friday morning, March 16th, and headed north. Theo slept or looked out the window the whole time and we only had to stop once to eat (and get gas)!

Saturday we met up with Jessi, Ally, and baby Braxton! He is such a sweetheart! We went and got Herbalife Shakes and went on a walk around their neighborhood.

[Theo's hands kept getting cold at the hotel room so I put his socks on his hands. I think it helped!]

On Sunday, Theo and I went back to the Shake Place with Jessi, Ally, and Braxton before heading over to see the whole family at Grandma Judy's rehab facility (she had a heart attack and stroke). We all gathered and had lunch. It was so fun to see some of Josh's cousins and Theo was able to spend time with Grammy Suzi, Great-Grandpa Joe, and Great-Grandma Judy.

  

[We put Theo and Braxton on the floor together but they were looking in opposite directions]

[So we switched places!]

[Much better!]

[This was right after Braxton pulled Theo's Paci out! What a stinker!]

[Theo with Great-Grandpa Joe and Great-Grandma Judy]

On Monday we made the long drive home. Theo did great and I couldn't ask for a better road trip companion! 

Thanks so much to Jessi and Ally for spending so much time with us. We had a blast and we are excited to see you all in July!

Theo's Seven Months Old

Theo is seven months old! He’s 17 lbs and 28 inches long (tall and skinny). 

It has been a very busy month for us. A brilliant team of doctors successfully plugged Theo’s Vein of Galen aneurysm with 78 feet of hair-thin platinum. Theo was in the PICU for four days while he recovered with the only setback being a platelet transfusion (read the full post here). 

Two weeks after the procedure was done we had a check up with Theo’s Neurosurgeon, Dr. Lin. He is concerned that Theo’s hydrocephalus hasn’t gone down any, so he has requested another fast MRI. He is leaning towards putting in a shunt the help drain the excess CSF.

We had a post-operation check up with Theo's Pediatrician on Tuesday. Since Theo is a little delayed, they sent off his information to get him into Early Interventions. I'm excited to get him started and hopefully he will catch up and start hitting his milestones soon!

[Josh can usually get some good smiles out of Theo while he is getting him ready for bed]

[Theo had to get his blood drawn every day for three days after his surgery so they could check his platelet levels. On his last day they poked him FOUR times. I almost had a heart attack! My poor baby!]

[He still hates tummy time. Can you tell?] 

[Theo got up from his nap while I was still working out. I put him in his chair and he sat there patiently while I finished]

[You can't tell, but he's yelling in this picture] 

[I love to spy on my baby] 

[So close to laughing]

While my parents were in town for Theo's surgery, we started talking about Nutrisystem. Josh and I decided to give it a try so we bought a freezer and ordered our food. We are two weeks in and it's going pretty well! The food isn't too bad and it's nice to not have to cook dinner every night! 

I've been getting back in PIYO. It's a fun exercise that is a combination of pilates and yoga. I love it and I am already getting stronger.

[Working on my V-Sit]

We went out to dinner with some of Josh's co-workers and Theo got hungry while we were there. He was being a pill and this was the only way he would eat!