Thursday, Feb. 23 – Day before surgery
We checked in at the hospital and were placed in a room with 3 other small children and their parents. Alex underwent a series of blood tests and examinations that afternoon to make sure he was ready for surgery. The poor thing was poked and prodded multiple times, since the nurses had difficulty finding his veins. Before surgery, we found out Alex had an abnormal clotting time for his blood, but were told this would not interfere with the surgery itself. In the evening, we met with the neurosurgeon to go over the procedure once again, and to ask any last-minute questions. We were told Alex’s head would be shaved (in case the alternate shunt surgery became necessary) and that surgery itself would take approx. 45 minutes.
Friday, Feb. 24 – Surgery
At 12 pm Alex was given a syrup to make him sleepy. Even as we were wheeling him down to the operating floor, he was still trying hard to stay alert. Alex tightly held my hand the whole way there. We entered a room where the anesthetist was. Alex was starting to look sleepy. The anesthetist asked what flavor he wanted to smell in the mask administering anesthesia, and he perfectly replied, “strawberry.” I then gave Alex a hug and kiss, told him everything would be fine and that when he woke up, I’d be right there with him. He didn’t give a reaction, and I figured he was just out of it by this point. The anesthetist put the mask up to his nose, and as I took one more look at him, he pulled the mask away briefly to say “Mommy” and he gave me a quick reassuring smile that everything would be alright. I left the room and joined back up with Claudio.
The wait was long. Alex went in the operating room at 12:30 pm and we tried so hard to keep our mind occupied, but the time was ticking by incredibly slow. At approximately 2:30 pm we heard from the surgeon, saying that the surgery went well and we could see Alex in the ICU. Claudio and I felt such a big wave of relief come over us. I had tears of happiness in my eyes and couldn’t wait to see my little boy. When we entered the waking up room, Alex was still asleep. It was wonderful to see his little chest breathing in and exhaling. He looked like a newborn baby with his shaved head and his hands pressed closely together, as if he were praying. I think I stared in awe for the next hour or so until he woke up. His throat was very sore from the breathing tube that was used during the operation, so he cried every time he let out a cough and that was what seemed to wake him. The nurse hooked up a vaporizer to his oxygen mask, and this seemed to give him quite a bit of relief. We were told he had to eat and drink something before he could be released from the ICU. He chose to eat a strawberry ice cream, a few pretzel sticks, and drank several sips of water. We were able to leave at around 7:30 pm and head back up to the room we were assigned. Once we were in the room, Alex ate a good portion of ravioli, and slept from approximately 9 pm onward. His vital signs were checked every 2 hours during the night, and he had to be physically awake for check-ups every 4 hours. Claudio slept over at the hospital this night.
Saturday – Day 1 Post Surgery
Alex woke up ready to conquer the world. We had a bit of trouble keeping him in a flat position (he was not supposed to raise his head more than 30 degrees for 24 hours post surgery). At 3 pm we were so relieved that he was allowed to sit up. We played a few games and looked at a book together. He got tired very quickly, and took several naps throughout the day. We thought this was normal, until it was time to sleep in the evening and Alex wanted to stay up. It was my turn to sleep at the hospital, so I tried taking Alex on many stroller walks through the dimly lit hallways in hope of him getting sleepy. I was quickly reminded that he was wide awake every time I approached the door to our room. Alex would say “no” in German and we went back out to roam the halls. In the wee hours of the night, he finally gave in and he went to sleep shortly after returning to his crib. This night, the nurses checked on him every 4 hours.
Sunday – Day 2 Post Surgery
Alex was able to be much more mobile. He was not supposed to stand, due to having IVs in both feet, but he was very happy to get down on the floor to play. He enjoyed being in the children’s playroom, where they had a few of his favorite toys, such as Legos and a kitchen set. I was excited to find a CD player hiding on one of the shelves. Alex had a ball sitting on the floor next to the CD player and dancing with his arms to songs from the radio and a Mozart CD. Claudio’s family came to visit in the evening.
Showing off his latest dance moves…
Monday – Day 3 Post Surgery
At 2 pm, Alex had a MRI to check the surgery’s success. In the evening, we were told the MRI looked good, but had to wait to hear more details from the surgeon the following day. Alex continued to eat well, was very active, and constantly making new friends with other patients.
Tuesday – Going Home Day
In the morning, the neurosurgeon explained that the MRI results confirmed that the fluid was properly flowing out of the hole he made in the membrane wall. He said we’ll know more as to how successful the surgery was in 3 months, when Alex goes for his next MRI. The great news is that the surgery is believed to be 85% successful, meaning that chances are in his favor he won’t need an additional surgery. Following the brief discussion with the surgeon, I met with the blood specialist to better understand Alex’s condition. She explained he has antibodies in his blood called Lupus Anticoagulaus, and this affects the way his blood clots. The specialist believes these antibodies will disappear over time, perhaps only taking a year to completely disappear. She explained that Alex will need a blood test every 6 months to monitor it, but she told us not to be alarmed, as many children have this, but it never gets discovered since it can fade away over time. After this appointment, we were free to go home. We thanked the wonderful hospital staff, and were home by 2 pm.
Alex had an eye test in the afternoon at the University Hospital. His optic nerve looks well and his vision is great. Afterwards, I noticed Alex was having a bit of difficulty breathing, so I called our local pediatrician to see if he had an appointment available. He did, so we headed straight there. Turns out Alex had the start of either Bronchitis or Pneumonia (could not be determined without an x-ray, and treatment for both is the same, so it wasn’t a priority to determine which one it was). He was put on Amoxicillin right away and was sent home to get some rest.
We had a follow-up appointment with the pediatrician in the morning. Alex was already feeling much better, and breathing much more easily. Since then, we’ve been very content to be at home with our happy, healthy little boy. We’re extremely thankful the surgery went as well as it did and that he recovered so quickly. Alex definitely kept our spirits high throughout our stay in the hospital. He was always saying/doing something to make us laugh (like calling Claudio by his first name and asking for pizza after surgery). We love our little boy with our whole hearts and are so proud of his strength and courage!