At the request of our Neurosurgeon, Dr. Klopfenstein, Theo had an angiogram today. An angiogram is "an x-ray test that uses a special dye and camera to take pictures of the blood flow in an artery or a vein" (WebMD). The angiogram was done by our Interventional Radiologist, Dr. Fraser. The doctor enters a vein in the leg, close to the groin, and then follows that vein up through the body, passing through the heart, and into the brain.
Since Theo's angiogram was scheduled for 8:00 AM (with a 6:30 AM check in time), we decided to go to Peoria the night before to stay at a hotel.
We arrived at the hospital at 6:15 AM and went to check in. The hospital was pretty quiet and check in went very smoothly. We were then sent to a waiting room where we hung out (I got a lot of cuddles from Theo) until a nurse called us to come back to a private waiting room. We dressed Theo in a baby hospital gown and then the nurses took his vitals. The anesthesiologist and Interventional Radiology nurse came in and talked to us about the procedure. We were told that Dr. Fraser's part would take about 30 minutes and when he was done he would come and talk to us. A nurse then came and wheeled Theo away.
After meeting with Dr. Fraser I was called to the PACU to see Theo. They had him swaddled and resting comfortably. I warmed up some breastmilk for him, but he didn't seem interested (likely due to him getting fluids from the IV). The nurse told me that Theo had to lay flat for six hours and that they would be moving him to the Angio Recovery area in a few minutes if his vitals continue to be good.
About 20 minutes later they wheeled Theo upstairs to the Angio Recovery. Josh was able to join us there. Theo got fussy so we fed him, but it was difficult since we couldn't hold him and we could only attempt to burp him by rolling him gently onto his side (with the help from a nurse).
After having some milk, Theo fell asleep and Josh and I were able to go to see the Geneticist.
They drew our blood and then talked to us about what the next steps were. Since Theo's other genetic test came back normal, the Geneticist decided to do a full genetic analysis of Josh, Theo, and myself. They are hoping to find a genetic mutation that could be responsible for Theo's vascular malformations. This genetic analysis will also look for cancer genes. The Geneticist also asked us if we could be okay with Theo being involved in case studies if the need ever arose. Of course I said that was fine. I hope that they can find out more about Port Wine Stains and the Vein of Galen Malformations. And if Theo can help then why would I not want him to participate?
After talking with the Geneticist, Josh and I headed back to the Angio Recovery to see Theo. He was still sleeping so I decided to take a nap too.
An hour before discharge, Theo woke up so we gave him a bottle. Around this time Dr. Fraser came to check up on us. It was nice of him to stop by. He told us that we would need to come back and see him next Thursday so he could take Theo's stitches out. At that time can talk about what the "brain trust" decided at their meeting on Wednesday. And I'm also hoping to get a tour of the PICU, where Theo will be staying during his recovery.
Angiogram pictures:
We arrived at the hospital at 6:15 AM and went to check in. The hospital was pretty quiet and check in went very smoothly. We were then sent to a waiting room where we hung out (I got a lot of cuddles from Theo) until a nurse called us to come back to a private waiting room. We dressed Theo in a baby hospital gown and then the nurses took his vitals. The anesthesiologist and Interventional Radiology nurse came in and talked to us about the procedure. We were told that Dr. Fraser's part would take about 30 minutes and when he was done he would come and talk to us. A nurse then came and wheeled Theo away.
He looked so small on that giant hospital bed. And I couldn't help but cry as they took him away.
Josh and I headed back to the waiting room but I had a hard time sitting still so we went for a walk to the cafeteria so I could get the world's best Rice Krispy treat! We then headed back to the waiting room and continued to wait.
After we got back to the waiting room I got a call from the Geneticist. They asked the Anesthesiologist to take some blood from Theo while he was under and they wanted Josh and I to come to their office when we had time so they could draw our blood too. I told them we would come over once Theo was done with his procedure.
After talking with the Geneticist I looked at my timer and started to panic when I saw that Theo's procedure had been going on for over 90 minutes. Something's happened. Something's wrong.
After 20 more minutes we got the call I had been waiting for. They said that Dr. Fraser wanted to meet with us in Conference Room A. We headed to the small room and waited. Dr. Fraser came in and immediately told us that Theo did great and that everything was fine. Phew!
He then explained to us what they found and what his thoughts were. Dr. Fraser told us that he believes he can fix Theo's aneurysm with one surgery. The surgery would be very similar to what they did today. They would enter the vein in his leg, go up into the brain, and insert coils into the aneurysm. This will cause the blood flow to return to it's normal amount and pressure. After the procedure is done Theo will be in the hospital for 3-5 days while they monitor him for heart failure, hemorrhage, and other complications. He will need to have regular checkups (probably for the rest of his life) to make sure that the coil is doing what it's supposed to do and that his heart is fine. Dr. Fraser also told us that the neurosurgeon will also be preforming surgery on Theo to fix his hydrocephalus. This surgery is more invasive and involves the neurosurgeon
to puncture a hole in Theo's skull and insert a shunt into his ventricles. This will help drain the excess Cerebral Spinal Fluid, which is causing his hydrocephalus. The procedures can not be done at the same time and Dr. Fraser wasn't sure who would go first.
He also told us that they were working on getting the "brain trust" together next Wednesday morning to discuss a plan for us.
Dr. Fraser then explained why Theo's angiogram took so long. They punctured the vein in his left leg first but the vein didn't look strong enough so they had to puncture his right side. He has a little puncture on his left side and a larger one on his right which they had to stitch up.
After meeting with Dr. Fraser I was called to the PACU to see Theo. They had him swaddled and resting comfortably. I warmed up some breastmilk for him, but he didn't seem interested (likely due to him getting fluids from the IV). The nurse told me that Theo had to lay flat for six hours and that they would be moving him to the Angio Recovery area in a few minutes if his vitals continue to be good.
About 20 minutes later they wheeled Theo upstairs to the Angio Recovery. Josh was able to join us there. Theo got fussy so we fed him, but it was difficult since we couldn't hold him and we could only attempt to burp him by rolling him gently onto his side (with the help from a nurse).
After having some milk, Theo fell asleep and Josh and I were able to go to see the Geneticist.
They drew our blood and then talked to us about what the next steps were. Since Theo's other genetic test came back normal, the Geneticist decided to do a full genetic analysis of Josh, Theo, and myself. They are hoping to find a genetic mutation that could be responsible for Theo's vascular malformations. This genetic analysis will also look for cancer genes. The Geneticist also asked us if we could be okay with Theo being involved in case studies if the need ever arose. Of course I said that was fine. I hope that they can find out more about Port Wine Stains and the Vein of Galen Malformations. And if Theo can help then why would I not want him to participate?
After talking with the Geneticist, Josh and I headed back to the Angio Recovery to see Theo. He was still sleeping so I decided to take a nap too.
An hour before discharge, Theo woke up so we gave him a bottle. Around this time Dr. Fraser came to check up on us. It was nice of him to stop by. He told us that we would need to come back and see him next Thursday so he could take Theo's stitches out. At that time can talk about what the "brain trust" decided at their meeting on Wednesday. And I'm also hoping to get a tour of the PICU, where Theo will be staying during his recovery.
Angiogram pictures:
2 comments:
Sending lots of thoughts and prayers to you! This feels all too similar to what we went through with our Lindsay!! Sending love!
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