We started the week off with Bella heading downtown to GI. She is making such progress in other areas – we want to continue those improvements in all areas! I want to start really pushing the eating by mouth. We’ll see if Bella is interested in that idea or not.
Beautiful Becca’s Orchestra Concert
Jason and I have been planning on going out of town to celebrate our 20th Wedding Anniversary. I just wasn't comfortable leaving Bella – not so soon after decannulation – so she was coming with us. Kris, who was the girl's nanny while Bella was in the hospital all of that time, was coming to stay with the rest of the kids while we went away. But there was this little voice that kept telling me that I needed to get Alex to the doctor before I left.
I got a call from the pediatrician on Monday telling me that my insurance company had approved Alex for the synagis shot for November through April, but not for October. The doctor was concerned because they have already seen cases in their office. They happened to have an extra dose. Would we be interested in it for Alex? I considered that a blessing! I took Alex in on Tuesday and asked the nurse if she could measure Alex’s head circumference while we were there. A couple minutes later Dr. Reed was poking her head in the room. We talked about my fears that his head has really gotten big lately. She pulled out his chart and sure enough his head circumference had gone from below the chart to 88% since June. A call into neurosurgery once we got home told us to head to the ER. Jason came home from work and together with our good neighbor, Jack Hecker, gave Alex a blessing.
After dealing with Texas Children’s Hospital for almost four years, I have some strong opinions about that hospital. But I have to admit that sometimes they get things right. I signed into triage at 12:50 PM. Twelve hours later, at 12:50 AM (now on Wednesday morning) we had had a CT scan, a shunt series of x-rays, neurosurgery, and were being wheeled into a room on the neurology floor (the 10th floor). His shunt had become obstructed. While we could see the catheter in his enormous ventricle in the CT, it couldn’t drain away the excess fluid. The resident (HATE dealing with residents!!!) said that if he had been older and his skull had been closed (being a 10 month old, his fontanel is still open – thank goodness!), his pressures were so high he would have been in a coma. That puts things in perspective, doesn’t it?
Having watched Bella’s vitals for forever, I found Alex’s fascinating. I texted my sister who happens to work down town. She only works a few days a week down there. The other days she works from home. Fortunately for me, Tuesday was one of her down town days. She came and sat with us. She stayed until Alex was out of surgery. Thank you Kath! I certainly appreciate it and I’m sure you were exhausted the next day!
Groggy little boy…he was so excited to eat once he woke up! They couldn’t believe how much he kept drinking and drinking. He had been NPO for 12 hours, ever since I had called neurosurgery. My Alex likes to eat!
He did so well. His CT scan in the morning was good. His only complication was a large goose egg (swelling) around his shunt. It almost earned us another night in the hospital, but in the end we went home in the evening on Wednesday. Of course, after having brain surgery, Alex had earned himself a chance to accompany us on our trip. There was no way I was leaving him.
I realized how much of Alex’s life I had missed. They asked me questions that I didn’t have answers to - like how does he respond to anesthesia? Obviously he has a shunt, he had had surgery before, but I wasn’t there and I didn’t know. I know now. He does awesome. He wakes up and is ready to eat. He is such a strong little warrior!
He was my happy and sweet boy so quickly after surgery – it’s truly amazing! I look back over the whole thing and realize how incredibly blessed we were. I am so grateful!
Funny thing – when they wheeled us into our room on the neurology floor, the nurse looked at him after looking at me. She remarked how cute he was, and then she said, “Is his Daddy Asian?” “Yes.” I replied and the conversation moved on. Adoption never came up. I guess if Jason had been there it would have. But to this nurse, this beautiful boy was my biological child. White, Asian, or biracial, I love you Alex!
When I got home with Alex, the girls spilled out of the house and gathered around their brother. They oohed and ahhed. They cooed and made a huge fuss over him. Everyone loved him and everyone had missed him. How good it made my heart feel! I had been afraid that they might get scared that their little brother was turning into a medical child, as Lizzy says. Bella has effected them, but they didn’t go there. They instead reacted in love and compassion to their little brother. And I am so grateful for their loving and strong hearts!
Becca and her Didi! Joy got all ready and checked to make sure her brother was OK. She kept telling us, “Owey. Hurt.” She has such a compassionate heart.
Thursday was my 39th birthday. I was grateful to be home, rather than at the hospital with Alex. I considered that his gift to me. :) Jason bought me flowers, chocolate and a card. Which I thought was nice because the new desk was my birthday present. Mama, Nathan, and Mandy stopped by with a card and brownies. Sammi made me a beautiful cake and this lovely ceramic girl. The note was so sweet. Jessi and Lizzy made me a card. And Becca stayed home, rather than go and watch her friend play football. I was grateful and touched that she spent time with me instead.
I had presidency meeting and we did our school work. It was a really nice day.
OT – all three at once! That is why I LOVE home based therapy! Bella is still my one with the sensory issues – I will NOT touch those beans! Alex did great though!
Where is Joy? Here I am! Becca loves her Didi!
Friday – we had pizza and wings for dinner. I was ready for a break. Kris got in that night. She was going to stay with the girls while we were gone. Loving on Alex.
Playing in the rain Bella adores her brother
I loved how they were playing together and Bella was hugging Joy Swinging Alex while he eats. Have I mentioned how much this boy LIKES to eat? .
Someone, who shall remain nameless, wrote on the outside of my house. Really? At your age? :) Oh well, she cleaned it up. It made me chuckle, when she wasn’t looking, of course. It reminded me of a picture or a story or something. Funny girl
Saturday morning, bright and early, Jason and I headed out to the airport to pick up our rental car for our trip to North Carolina/Tennessee. Someone knew that we were leaving and wasn’t having any of that! She tagged along with us to the airport. The only way we could leave her without my heart breaking in two was to bribe her with '”j-ow-e-c” (soda). I guess she had nevre held money before. She liked that! Our rental car….and we were off.