Today (Thursday, February 15th) was the day I had been looking forward to and dreading for the last seven and a half months. I knew this day was coming and I knew he had to have this procedure, but it didn’t make it any easier.
Josh, Suzi, Theo, and I arrived at the hospital at 6:30 AM to check in for his 8:00 AM procedure. We headed to a large waiting room where Suzi got some sweet cuddles from Theo.
We were then called back to a smaller waiting room where we got Theo dressed in his hospital gown and we met with Jessica, the RN from Interventional Radiology. She assured us that Theo was in good hands and that all the doctors were starting to show up.
[Theo and our awesome nurse, Alex]
We continued to wait and at 8:00 AM Jessica came back in to tell us that a few doctors were running late. Dr. Fraser then showed up and told us more about Theo’s procedure. He said that 15 doctors were going to be in the room with him. He said that there was a possibility that they wouldn’t be able to go through the vein by his groin, like they did with the angiogram. If that was the case they would go in through the jugular vein in his neck. And if THAT wasn’t an option they would have to go in through the back of his skull. The Neurosurgeons were on hand just in case either of those scenarios happened. He also told us that the coils that they will be clogging the aneurysm with are made of platinum and that he will have thousands of dollars worth of metal in his head for the rest of his life.
After talking with Dr. Fraser, Josh and I decided to take Theo and walk the halls while we waited for the rest of the doctors to show up.
At 9:30 AM we were approached by a nurse, Liz, who told us they were ready to take Theo to the OR. She said that I could carry him there instead of having them roll him away on a bed. When we got to the OR doorway I started to cry. The room was huge and had all kinds of fancy machinery. Liz asked if I was ready. I shook my head and started bawling. Theo had no idea what was going on. He had no idea that his life was in their hands. I gave him one more kiss, told him I loved him, and gave him to Liz. As I turned to walk away I heard him yell out for me. It was heart breaking.
Josh and I walked back to the waiting room hand in hand. I am so glad he was there with me. He is so much stronger then I am.
We gather our things and went to the waiting room to find Suzi. We had 2-8 hours to kill (Dr. Fraser didn’t know how long it would take), so we headed to the cafeteria to get something to eat.
The next few hours went by pretty fast. Every hour Liz would call me from the OR and give us an update.
Right when my parents showed up at the hospital (they drove in from Ohio), I got a call from Liz informing us that that they were finished and Theo was on his way to the PICU and Dr. Fraser wanted to meet with us in Conference Room C. He told us that Theo did great and that the surgery was successful. Dr. Fraser then pulled out his phone and showed us before and after photos of the surgery. It’s so crazy to see the aneurysm filled with all those coils. I still have a hard time comprehending that the pictures he was showing me were of my child’s brain.
[MRI from 11/27 showing the aneurysm]
[Angiogram from 1/18 showing the aneurysm]
[The first coil going into the aneurysm]
[Coils going into the aneurysm]
After talking with Dr. Frazer we headed up to the PICU waiting room. While we waited to be admitted to the PICU, Darth Vader showed up!
After taking pictures, we got our badges and went in to see Theo. He was very groggy and tired but was doing well.
During the rest of the day we had multiple visits from Interventional Radiology, Neurosurgery, and the PICU doctors. They were all please with how Theo was doing.
That night I stayed at the hospital with Theo while Josh went back to the hotel to get some sleep. Theo didn’t sleep very well during the night, either because he slept so much during the day or he was being checked every two hours by the nurses.
The next morning (Friday, February 16th) Theo was able to get his catheter out and they told me that if he continues to eat well that they would take him off the IV. Our Neurosurgeon, Dr. Lin, came by again to check on Theo and he was worried about his brain swelling so he ordered an ultrasound.
[Talkin with Grammy Suzi]
[He was so hydrated that his Port Wine Stains disappeared]
[Ultrasound]
Theo was taken off of the IV because he was eating but once he was off of the IV he didn’t want to eat anymore. They didn’t want him to get dehydrated so they hooked him back up to the IV.
Dr. Albaro with Cardiology came in and checked on Theo and she is very pleased with how he was doing. I asked her if we needed another Echocardiogram and she said no because all of his numbers looked great!
That night I went to the hotel to sleep while Josh stayed with Theo. During the night the nurses attempted to take blood from him but they blew out two of his veins. Theo did manage to poop and Josh fed him six ounces of breast milk in the night.
The next morning (Saturday, February 17th), I drove back to the hotel and was told by the nurse that Theo’s platelet numbers were low so they were going to give him a transfusion.
Theo was very sleepy today and didn’t want to eat much. Dr. Lin and the Neurosurgeon resident checked on Theo again and Dr. Lin wants to do a CAT scan or MRI to get a better look at the brain swelling.
I was able to hold Theo for a little while today!
At the end of the day the Neurosurgery Resident stopped by again and check Theo’s skull. He thinks the swelling has gone down a bit so thats great news.
Theo’s blood work has been a little wild. They tested his platelets and it was at 19 so they gave him the transfusion and then it skyrocketed to 319 and then the next day it went back down to 89, but that turned out to be wrong. They checked again and his levels were in the 200s.
They also drew some blood to test a few other things but one of the labs wasn’t able to get a good reading because Theo’s RBC’s were “breaking down.” They thought that was strange so they want to do more blood work on him to make sure that was just a fluke (it was).
Theo also developed a cough and his lungs are a “little coarse”
Last night I stayed with Theo and he ate a lot better (7 ounces during the night) and he slept in longer stretches.
Today (Sunday, February 18th) the Neurosurgeons stopped by and ordered a quick MRI so they can see what is going on in Theo’s ventricles.
[When Theo sleeps, mommy sleeps]
The Pediatrician came by and we talked about Theo’s lungs and cough. He thinks it is likely from drainage from his sinuses (I know how that is). He ordered a test to be done to see if Theo is allergic to heparin. He changed Theo’s blood work to be done every 12 hours because he felt that they were taking too much from him.
Josh and I went with Theo to get his MRI. It was really fast (they just took a few pictures) and they didn’t need to sedate him.
The next morning (Monday, February 19th), I arrived at the hospital in the morning and we had a lot of visitors.
Dr. Lin came by to check Theo’s soft spot and to let us know that his ventricles look a little fuller then his 11/27 MRI, but since his soft spot is still soft he will not be recommending a shunt at this time. He cleared Theo to go home but wants to see him every two weeks for a check up.
Next, the PICU doctors came in. They were very pleased with Theo’s progress but were concerned that he still didn’t want to eat. They took him off the IV in order to get him to eat. They also told us that they were going to get in touch with Early Interventions for us and they will be contacting us in the next week.
Mark with IR then came in to check on Theo. He was also happy with his progress. He gave us CDs that has Theo’s MRI, angiogram, and pictures from his procedure. He also told us that they put 2400 cm (944 inches) of hair-thin platinum in Theo’s aneurysm! That’s 78 FEET! IR cleared Theo to go home and we have to see them in a month for a check up.
The PICU doctors told us that we could go home IF Theo would eat and keep it down. We tried to get Theo to eat but if he is tired he won’t eat. And every time Theo fell asleep someone would come in to check on him or get vitals and he would wake up. Ugh.
I FINALLY got him to ear 2 ounces but when we sat him up to burp it all came back up!
I was on the verge of tears!
Finally we got Theo to eat and hold down two ounces! And we were discharged from the hopstal!
I want to thank everyone for their thoughts, prayers, and good vibes that were sent our way. I especially want to thank my parents and Suzi for coming and supporting us. It was a pretty rough few days but we made it through and we are going home!