Theo and I have had a pretty busy week. On Tuesday, January 9th, Theo and I headed to the Hospital in Peoria so we could meet with Dr. Fraser from Neurovascular and Interventional Radiology. I thought the meeting would be short and simple. "Hi, I'm the doctor that will be doing Theo's surgery... okay, see you when that happens." But I was very wrong.
When we arrived at Neurovascular and Interventional Radiology we first talked with a nurse who told us we would be meeting first with Mark Morris, who is a nurse practitioner (among other things), before we meet with Dr. Fraser.
Mark came in and asked me questions about Theo's development and his medical history. He then explained to me what they do at Neurovascular and Interventional Radiology and what their plan was for Theo. He was so kind and had no problem answering all of my questions.
We then went into a small office where I met Dr. Fraser. We sat down at his computer and he showed me Theo's 11/27 MRI results. I had seen pictures and illustrations of his aneurysm before, but seeing that huge black spot in the center of my child's brain was terrifying. Theo's vein is supposed to me 1 mm but it is 2.5 CM. Dr. Fraser also showed me other views of Theo's brain which showed hydrocephalus and other blood vessels that are slightly dilated. He voiced his concerns about waiting to do the surgery because it can affect Theo's development. He then told me that there are only 2000 cases like Theo's in the world every year and the best hospitals to handle his situation are in Paris, San Francisco, and New York. He said that he would give us a recommendation so that we could go to one of those hospitals if that's what we wanted to do. I asked him if he was confident in his ability to do the surgery and he said that he was (he has done the surgery multiple times before when he was in San Francisco), but he was concerned about Theo's post-op care. After the repair to the aneurysm is made, the pressure system of the brain changes and it can overload the heart. Since this surgery has not been done in Peoria before, he was worried that Cardiology may not be willing to take on Theo as a patient and give him the care he needs.
I was overwhelmed.
Dr. Fraser told me that I should talk to Josh about everything before making a decision.
After the meeting, Mark and I spoke again. He told me that he was going to set up a meeting with Cardiology and we can go from there.
When I got home from the hospital I received a call from the hospital informing me that they had set up an appointment for Theo with Dr. Patel from Cardiology in two days.
On Thursday, Theo and I headed, once more, to the hospital in Peoria. We got there early so I could give Theo a bottle before his appointment. After feeding him we went to Cardiology where we were taken into a small exam room. I undressed Theo and a nurse took his measurement (weight, height, blood pressure, pulse, etc.). After she was done Theo started screaming! Not crying, screaming! I had no idea what was wrong. I thought he was probably tired, since he had just eaten, so I put him in his stroller and tried to rock him to sleep. It wasn't working. The screaming continued. Dr. Patel then came in and asked me if I wanted to turn the lights out and try to rock him to sleep before she and I discussed why we were there. I thought that was a great idea. I tried for a few minutes to calm him down but nothing worked. I was freaking out!
Dr. Patel then came back in and suggested that one of the nurses try. No problem! Please take him!
The nurses tried everything: rocking, a mobile, sugar water, etc. and finally they got him to fall asleep.
Dr. Patel then suggested to me that I feed him again (even though I just fed him). Even though I was sure he was tired and not hungry, I prepared a bottle and took it to him. He sucked that formula down so fast I thought he was going to be sick!
[So happy after eating!]
I thanked all the nurses and apologized to everyone for the headache. I felt terrible. Theo hardly ever cries and if he does we are able to soothe him quickly. I was so lost, but I am so grateful for all the help I got from the nurses and doctors. Good thing we were at a children's hospital!
After Theo calmed down, he fell asleep and Dr. Patel was able to examine him and talk to me about what she was thinking. While I was feeding Theo, Dr. Patel went and found Dr. Fraser so that they could discuss exactly what his concerns were with Theo's post-op care. She told me that even though she has never cared for a child with the Vein of Galen malformation, she was very confident in her ability to do so. She said that she wants to have a meeting between Dr. Fraser (Radiology), Dr. Avellino (Neurology), and herself (and their teams) so that they make sure they are all on the same page. She then set up an Echocardiogram for Theo.
While we were waiting for the Echo, I got a call from Mark with Neurovascular and Interventional Radiology. He said that they talked with Dr. Klopfenstein who is a Neurosurgeon who specializes in Cerebrovascular procedures. He is also going to be involved in Theo's situation. Dr. Klopfenstien wants Theo to have an angiogram so that they can get a good look at the blood vessels in Theo's brain. Mark set up the angiogram for 1/18 (in one week) at 6:30 AM. They will put Theo under anesthesia and will send a catheter up a vein in his leg which will travel into his brain. They will be able to get a really good look at his blood vessels this way. Mark also informed me that he was working on getting a face-to-face meeting between the Cardiologist, Neurologist, Neurosurgeon, ICU Doctor, Radiologist, and their teams. Hopefully that will happen next week.
After I got off the phone with Mark, the Echocardiogram technologist came and got us for Theo's Echo.
After the Echo (Theo did great!), I took Theo back to the exam room and got him dressed. While we waited for Dr. Patel, Theo fell asleep. Dr. Patel then came and told me that Theo's Echo looks great. His PFO has closed and his heart looks healthy. YAY!
[I knew he was tired!]
I have to admit. I've never been so stressed or cried so much in my life. I am beyond overwhelmed. I am so grateful that we have such amazing doctors, but I still know that things can go wrong. Hopefully the "Brain Trust" (that's what I'm call our group of doctors) will come up with a great plan and everything will be fine.
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