Leah's surgery on Wednesday night went very well. Thank you to everyone who has been thinking about us and praying for us. We're now home and trying to get back to normal.... as normal as life can be with a baby :)
On Wednesday afternoon we went to the hospital and Leah had surgery scheduled for 5pm. Her neurosurgeon, who also did her back repair 3 weeks ago, started just before 6 and came out to the waiting room at 6:40 to tell us that he was done and "we'd be very happy." What a relief! He truly does have magical hands!! She spent Wednesday night in the Pediatric Intensive Care Unit (PICU) and I stayed in her room with her. She was pretty fussy and we could tell she was in a lot of pain. Every time she moved, she cried. I tried feeding her and giving her a pacifier, but I could tell that it hurt just to try sucking. It was incredibly hard to see my little baby be in so much pain. Finally she got some tylenol at 3am and that gave her some comfort, and I could fall asleep. At 6:30am she went down to Radiology (in Daddy's arms) to get have a CT scan of her head. Her neurosurgeon and his nurse assistant came in shortly after to show us the images, and we could see the shunt in her head and the tubing all the way down into her abdomen. Amazing images! They also told us that it was working very nicely, the fluid in her head was starting to drain properly. Relief!
On Thursday morning she was moved to the Infant Care Center (ICC), the step-down unit for babies. They took her IV fluids down, so she was starting to get hungry and actually wanted to eat. Thursday was a pretty uneventful day, just a lot of managing her pain and making sure she was eating and making dirty diapers. On Thursday night she had the 4-channel pneumocardiogram, which we were supposed to do at home the other night but canceled when we scheduled surgery. This test is to see how well she breathes at night and whether she has any apnea. Her doctor reviewed the results and found that overall she has good breathing and most of the time her oxygen levels stay high, but she did have a little bit of apnea. He was actually hoping for these results because he can now prescribe some medication to help her lungs, which he thinks is important for all of his Spina Bifida patients.
Finally on Friday we were given the ok to go home. But first we had to learn about warning signs for shunt failure - things like overly fussy, overly tired, fever, swelling around her incision, and anything that is just out of the ordinary for her. We also had to pick up a prescription that we'll give her daily for her lungs and Tylenol to help her pain. The doctors also gave us a special cream that we'll use 3 times a day to massage her lower back, hips and legs. Since she doesn't have much movement, this will help her circulation.
We got home Friday afternoon, and I think she knew she was home. I put her in her swing, and she just vegged out. She doesn't mind a lot of noise but she does not like having all the wires and tubes all over her and she hates when people come around and poke at her. She also likes when we walk around with her, and we couldn't go very far when she has 10 things stuck all over her. And then it was like we had never gone anywhere.
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