From 8 surgeries in two years to thriving toddler
Nothing is harder for me as a mother than to watch my kids suffer through surgeries, procedures, and hospital visit after hospital visit. It’s even more hard when I can’t do anything about their pain or help them in any way. All three of my kids have had surgeries, but nothing compares to my son Daniel who’s had eight in two years.
Daniel has some physical abnormalities that led to a number of surgeries in his first two years of life. He was born with #Vacterl assocation (Vertebrae, Anus, Cardiac, Trachea, Esophogus, Renal, Limb) birth defects that affects multiple parts of the body. Daniel has five of the defects including tethered cord, imperforate anus, narrow nasal passages, one kidney, and clubbed foot.
He’s had a surgery for every one of the defects except the one kidney. His biggest surgery was when he got his colostomy stoma takedown in the summer of 2017, because he had to do it twice.
Daniel was born without an anus and needed a colostomy bag right after birth. He had his stoma takedown a year later, removing the bag and stayed in the hospital for five days. He was eating well and pooping regularly so he was able to go home. Two days later he was running a fever of 100.8 degrees, wouldn’t eat anything, slept all day, and was bloated. The doctor told us that if he’d gotten an infection from surgery, we wouldn’t see symptoms for five days. That’s exactly what happened. The intestine leaked from where it was stitched up. The ER doctor had to bring up stomas again, because the area was too contaminated to just clean it out.
I had never seen him so out of energy before. Daniel is usually running all over the place, but was laying down a lot and very quiet. He denied Pedialyte which at the time he loved. My gut feeling told me to go to the ER, which saved his life. We caught it at the beginning stages before it really spread.
Daniel was in the hospital for another 12 days on antibiotics to clean out his system. He wasn’t able to eat until his system was cleared from all the bacteria so he became really lethargic. His temperature kept going up and down, but his labs and tests came back normal. So, he was moved to the Pediatric Intensive Care Unit (PICU) after three days to monitor him a little closer since they didn’t know why he was getting fevers. His system was clearing by an Nasogastric tube (NG) through his nose. Since they were running so many tests and couldn’t get a good IV due to lethargy, they decided to put in a Central Venous Line Placement through his neck. This helped with giving him medication, nutrition, and blood samples without poking him so much.
It took about six days for the NG tube to look clear. The only thing that came back from blood cultures was the infection which was expected. What was frustrating was how surprised they were by his lethargy and no energy. I reminded them that he hadn’t eaten in five days. My mom said it best, “What’s he supposed to be doing? Jumping around in his crib?” It didn’t make sense. It was hard seeing him so weak, not allowed to eat anything. There was nothing I could do for him. He also cried everytime anyone came in the room.I felt like I was never able to comfort him when he needed it most. I couldn’t hold him for the first three weeks after his thisspecialjourney.com/2018/09/12/a-love-hate-relationship-w... and then I wasn’t able to console him during his most vulnerable trials. In the most crucial parts of Daniel’s life, I felt like an outsider, even though I was right there with him
.Once the NG tube was clear we did a CT scan which showed there were no pockets of infection. His blood levels were low so we decided to do a blood transfusion. The transfusion helped and he could finally eat after nine days.He spent his 1st birthday in the hospital but the nurses made his day special. They decorated his room and gave him some treats. We had a little party for him in the waiting room and he had enough energy to hang out with us for a little bit before going to bed.
When Daniel came home he was very weak. It took him about two months to get back his strength. His physical therapist said that two weeks on bedrest takes away 80% of strength.Three months later, Daniel had his stoma takedown again and it went much better. Other than the colostomy, anus, and two stoma takedown surgeries, Daniel also had surgery on his nose twice to widen his airways, his achilles, and on his back for tethered cord.
What gets me through these hard times is prayer and knowing God is there with us every step of the way. With everything going on with my family, I don’t really freak out about anything. I know people are praying for us, because I truly feel that love and support, which makes me so calm.
Daniel’s physical disabilities and surgeries have delayed him a little bit, but nothing stops him from doing what he wants. He wears special orthotic shoes for his clubbed foot, which delayed his walking, but through physical therapy he was walking in no time. He only wears the shoes at night now.
Daniel is finally thriving and doing things other two-year-olds do. He’s learning his shapes and colors right now. His imitation is incredible and does really good copying other people. We’re learning sign language for his brother Nicholas, but Daniel picks it up really quickly. He’s doing better with his eating and talking every day. He does occupational therapy once a week, speech & feeding therapy twice a week, and physical therapy twice a week.
He’s certainly a fighter and is the strongest boy I know. Despite all he’s been through, Daniel is a happy little boy. I see God in him, and he’s definitely taught me what love is all about.