Tuesday, September 13, 2011

Going to the Zoo....

We had a great week full of fun before Saoirse's surgery. We knew she would be down and out for a bit, so we wanted to fill her with fun and happy thoughts before she had to stay in bed for a while. 
Sunday we took Saoirse to the zoo for the first time. We went to the Stone Zoo which is close to home. Even though it doesn't have any large animals like elephants or giraffes, Saoirse loved seeing the animals and walking around. Of course the monkeys were her favorite, and she was trying to talk to them through the glass. SO CUTE! One of the big black bears even sat and stared at her for a while while she snacked on goldfish in front of him. I'm sure she would have been willing to share if they weren't separated by fences. As we were wandering around, we heard someone yell out "Saoirse!" We, of course, turned right away, and another woman was calling her daughter over to her. We asked if her name was Saoirse, and introduced the Saoirses to each other. She was an adorable little (about 4 year-old) girl, with pretty blonde, curly hair, and it made me think about what our Saoirse's hair will look like when it grows in. I would just love if it was the cute little baby curls that always make for adorable hairdos. After a long day at the zoo, we came home and got ready for the next day of craziness. 
Monday morning, bright and early, we went down to Boston for another "zoo" - Saoirse's tumor resection surgery. This was the big one - they opened her abdomen all the way across and removed her primary tumors and any other tumor cells they could see and feel in her abdomen. Dr. Weldon was the surgeon, and he was amazing. From pre-op to post-op, he explained everything, was straight forward about the risks and the realities, and made us feel confident that she was in the best hands and that he would do whatever was best for her, while removing all of the tumor he could find. I don't know what it is about him, but whenever he talks to us, I feel a calm come over me, and I know that she is in good hands and will be well taken care of. We were briefed by the anesthesiologists and talked to Dr Weldon before Saoirse went into the OR. We were prepared for a 8 to 12 hour surgery, and were ready to wait all day. The nurses update what is happening in the OR every 60 to 90 minutes, and we waited eagerly for the updates, and were glad to hear how well she was doing each time. Saoirse went into surgery at about 7:30 am, and Dr. Weldon opened at around 9:30. We had breakfast, I took a little nap, we wandered around Fenway and had lunch, and when we got back from lunch we got our final update - at 2:30, the doctor was closing. The surgery had lasted just 5 hours. The news from the OR was good, but I had a nervous feeling - I just knew that they hadn't been able to save any of her adrenal glands. Of course, I hoped for the best as we waited to talk to Dr. Weldon, but I was right. Dr Weldon was very happy with how the surgery went, he said her other organs look great, and that she shouldn't have any issues with them, but he had to take out both adrenal glands along with the tumor that was intertwined with them. The best news, was that he got everything he could see and feel, and she handled the surgery very well. We couldn't wait to see her, and were brought right up to ICU. 
Saoirse was on a lot of medicines when we got in to see her. Of course there is pain medication, which was being put through an epidural, some fluids, some hepron to keep lines open, and some steroids and antibiotics. With the loss of her adrenal glands, her body no longer has the hormones to control stress, so she is on a stress dose of steroids to replace those hormones and help her regulate her stress levels and be able to heal. Over night was rough, she wasn't comfortable, and her pain was pretty high. Every time he pain would be managed, and she fell asleep, her blood pressure dropped, setting off alarms and waking her up. I sat by her bed all night, trying to keep her calm and keep her heart rate down. There was some adjusting of medications, and a time when she pulled her NG tube half way out and it had to be re-inserted. With all the craziness, I didn't get any sleep, but she got some intermittent sleep which was good. Today, I called Mike to come in early because I couldn't sit up anymore, and I got to take a quick nap while he sat with her. The pain management team came in to work on managing her pain better, and the endocrinology team looked at her dosing for her steroids, and wrote for a higher dose to try and manage her stress response better. It took most of the day to implement all the new medications and dosages, and over the course of the day she was running a rather high fever, but she seemed to be in less pain by the afternoon. She even pooped, which means that she can start some oral intake tomorrow morning, which is a step in the right direction! I came home for the night, but Mike told me that her fever is under control, and her heart rate has gone down significantly. Hopefully tomorrow we can bring her down stairs to her friends on the sixth floor, and she can start doing some more normal things. I will be brining plenty of Curious George videos for her to watch while she's still sore. 


  1. Olá, estou aqui no Brazil torcendo pela recuperação do seu baby, sei que Deus irá lhe dar esse lindo presente. Sou mãe e sei o quanto a saúde de nossos filhos é essencial pra gente!

  2. My Alexander Also loved the bear at the Stone Zoo! He laughed and smiled at it.
    I am glad that the surgery went well. The waiting is the hardest part.
    Hoping that the recovery goes smoothly

  3. Hi Kezia and family,
    I came across your blog through the CHB facebook page. My son was diagnosed with Neuroblastoma 2 weeks ago after his tumor was removed by Dr. Weldon the week before. Reading your post, I just kept nodding my head with everything you wrote about him - he really is amazing and made us feel so much better about our son's surgery. Saoirse is in my thoughts and prayers...if you'd ever like to connect, please feel free to email me at mansfieg@hotmail.com

  4. First I just want to tell you what a beautiful girl you have! She is just precious. I have a 14mo old girl as well and just can not imagine the pain you all must be going through. I am so very sorry you and your family are dealing with this.
    I saw an article on you guys today on CNN and came across your bog. Stay strong and take care of yourself as well. I will pray for your daughter and for your family.