I am writing this on August 22nd, 2015 It’s hard to go back to just 3 weeks ago and relive the most difficult days of our lives.
July 29th, 2015 – Tucker, Parker and I said our good byes to Preston and tried to convince him that everything was going to be ok and we would be back soon. We got in the car and had a fairly easy drive up to LA. I felt numb. No tears. Nothing. It was almost like I had nothing left in me. Once we got to the hospital Parker did amazing. We had and EKG, Chest X-Ray, and they took blood. I was amazed at his strength. He cried but he was strong and I was proud of him. He handled everything like a little champ. Meanwhile throughout the day we were receiving constant messages, and texts and Facebook photos of family and friends wearing Team Parker shirts. Tucker and I were blown away with the support we were receiving. It helped us more then you can imagine. We were blessed to have some of our family & friends drive up that night so they could be there to support us. We decided to have a nice dinner at our hotel with our group of friends. We got the call that Parkers surgery was scheduled for 9am. I was really happy about that time since he had to fast and we wanted to be 1st case of the day since he has Williams Syndrome and is considered to be high risk.
1 hour later we got a call that his surgery got moved to noon. Ugh.. Now I was definitely starting to feel overwhelmed. I sat at dinner and all I could think about was Parker. He didn’t seem that happy to be there and I didn’t want to stress him out so I took him back to the room. The second I walked away from the table I started to cry… hard. I just remember walking through the hotel holding my baby and completely sobbing. People were staring at me and I didn’t care.. I couldn’t stop. By the time we got to the room I was completely hyperventilating I texted my friends who were luckily upstairs and told them I needed them to come up to my room as soon as possible. I was crying so hard that Parker thought I was laughing and I watched him look at himself in the mirror and smile and laugh. I felt so bad for him; He had no idea what was about to happen to him. I had no idea what was about to happen to him. I was overwhelmed with fear. Within minutes my friends were knocking at my door. Thank God I had them that night. I’m not sure how I would have made it. They helped me give him his last bath. The hospital gives you specific instructions on bathing and wiping him down with wipes to help prevent infection. I couldn’t help but cry as I wiped his little body, as he smiled up at me having no idea what was about to happen. I took a ½ Xanax that the doctor prescribed to me and went to bed.
The next morning since Parker couldn’t eat anything, I decided I wasn’t going to eat either. I didn’t want to eat in front of him so I fasted with him. I packed our bags for the hospital and made sure I had everything he needed, his favorite blankie, pacifier, his new stuffed animal and some clothes. I called the hospital and let them know that since Parker has Williams Syndrome he has to be well hydrated before surgery. It’s very important and it’s in the WS guidelines. Tucker and I decided to go a little early so maybe they could hook him up with his IV to get the fluid going. As we left the hotel I started to have a panic attack again. I literally couldn’t breath and I couldn’t stop crying. I had to stop at Walgreens on the way and I remember wandering around the store crying thinking Tucker was going to have to come in and get me. I didn’t think I was going to make it.
As we pulled up to CHLA my heart was pounding and I did everything I could to pull myself together. We asked the Valet man to take a family photo of us. I couldn’t help but wonder, was this out last picture together? It was really hard.
Once we checked in they told us they had to take Parkers blood again. Ugh… We brought him in and I told the lady which arm and she didn’t listen and she kept poking him over and over until he was screaming. Then she tried the other arm and it worked. I knew this was only the beginning and really nothing compared to what we were about to endure.
We waited around a lot. It seemed like hours.. I kept telling everyone that he needed to be hooked up to IV’s because he has WS and it’s very important for them to be very hydrated. Kids who aren’t can die. I had my WS friends texting me, telling me “he needs to be hydrated”, sending me the guidelines and telling me to reschedule the surgery. No one was listening to me I felt helpless. It was now 11:30am. 30 min before scheduled surgery and Parker was still not hooked up to IV. Finally the head Anesthesiologist came out and let me know that he would be fine. They don’t start IV because it stresses the kids out even more and its not good for their hearts. They are very familiar with Williams Syndrome and he is in really good hands. There is a point when you just have to trust… so I did. At 12:15pm they gave Parker something called a happy drug. It would take the edge off and help him to not cry when we were separated. They then came over and said “it’s time” I held my baby as we walked to the double doors. He didn’t want to go to the 1st nurse, then he put his arms out to the 2nd nurse and we kissed him goodbye and watched our baby slowly be taken away….. Tucker and I sat in the corner holding each other crying. I cry writing this…. A feeling I will never forget. So many months and years of worry. I played that moment in my mind for so long and it finally happened. And now we wait….
We walked downstairs holding hands and went to the cafeteria and were greeted with a sea of blue Team Parker shirts. Family and friends were reading and working and sitting around the table patiently waiting for us. We cried and hugged each other. They made sure we ate, drank water and were side tracked as much as possible. My phone rang at 2:45pm. Parker was out of surgery. Everything went great. 3 patches in about 2 hours. Parker had a blood transfusion, Parker was on bypass, and they stopped his heart. When I think of what he went through it blows my mind. Medicine is amazing.
Tucker and I practically ran upstairs to see our baby. We walked in and he laid there asleep. His arms were tied down to the bed. He had a breathing tube in, a line coming out of his neck, his stomach, and his heart. Monitors all over him. I had seen pictures before but nothing really prepared you for that. But we didn’t care, we made it and in our minds that was the hardest part. That night our friends ordered food and we sat outside and had a glass of wine and celebrated Parker and everything we had just went through. We were so grateful. Around 9:00pm we went upstairs and little did we know things were really about to get hard. Parker was now coming off anesthesia and was in a tremendous amount of pain. He was arching his back and crying except you couldn’t hear anything because his breathing tubes, you could just see tears coming out of his eyes. It took multiple nurses and Tucker holding him down and I sat in the corner and cried feeling completely helpless. They could not get his pain managed so they gave him a paralyzing drug that basically paralyzed his whole body. I wanted to die. I was terrified. After about 45 min, the drug kicked in and he slept soundly throughout the night. So did I. I took another ½ Xanax after asking the nurse if she thought it was appropriate. I didn’t want to be irresponsible. After seeing me completely panicking she encouraged me to go to sleep. They had one nurse in his room at all times so I felt like he was in good hands.
July 31 –I woke up at 6am. Parker was sleeping and I got a pretty good night sleep. I noticed a weird pulsing on Parkers tummy. I asked the nurse if this was normal and she said she had never seen it before. She was waiting for the doctor to come take a look. The doctor said that it was either just a twitch in his tummy because of the blood flow, or worst case scenario there was an aneurism and they would have to go back in and operate. They ordered and echo and ultrasound to take a better look. Tucker and I walked downstairs to grab a coffee. Tucker was panicking. We really didn’t think we could make it through a second surgery… As we walked upstairs back to our room we saw all the nurses and doctors surrounding Parkers bed. Apparently we just missed a big scare. Parker’s blood pressure dropped to 30. He gave everyone a scare apparently and they said thank god we weren’t there to see it. And good news his ultrasound came back beautiful and he didn’t need surgery and the pulsing went away.
Then he started coming off his pain medicine again. It’s crazy to watch the nurses trying to find the right dosage of each drug to make him feel ok. It took 4 of us to hold Parker down and it took over an hour. They said they had him on so many drugs that you and I would be face first on the ground but it didn’t affect him at all. I guess kids with syndromes have different pain receptors. They said he was the strongest 2 year old they had ever seen. He’s 19 pounds and it took 4 of us to hold him down. It was a nightmare. It was scary and I cried for most of the time. It is the most helpless feeling as a mom to watch your child in pain and not be able to hold him and comfort him.
Parker did great the rest of that day and by the evening they took his breathing tube out.
The next day they moved him out of CICU to Acute Care. This was supposed to be where they start preparing us to go home. I remember our first night in the room. We had a terrible nurse who wasn’t helpful. Parker had a fever and he was shaking and I was left alone in the room with him. 72 hours post op and I can’t hold him and he has a fever and is shaking and I had no help. I kept asking for a doctor and no one ever came. Parker was so drugged up, he laid in his crib and stared at the lights and didn’t sleep at all the whole night. He also didn’t make a sound. It was weird.
Over the next few days we took more tubes out, lowered his medicines and tried to get him eating. He wasn’t really interested in food or liquids and they wouldn’t let us leave until he was drinking enough fluids. It took me convincing the doctors and nurses that I thought he would be more comfortable at home and he would be more interested in eating and drinking once we were there. I also had to learn to hold him or scoop him up which would have to be the way I picked him up for the next 8 weeks.
After 6 days we finally got to go home. It was an amazing feeling. Tucker and I were leaving the hospital with our baby. All 3 of us together and Parker was healthy and doing great. We were so excited to get home and see Preston. It had been 7 days since we had seen him, which is the longest ever. We couldn’t get there fast enough. We are so grateful for our family, friends, surgeon, nurses, and hospital staff. All the support we received was beyond amazing. There are no words for the amount of gratitude we felt that day. We will never forget it.
So today, August 22, 2015 we celebrate Parkers 2nd birthday with a huge sense of relief. Our hearts are full and we are forever grateful.