Then we got to wait...something we have become very accustomed to. At this point we all believed that there were significant chances of an obstruction around the pylorus...something that the two ultrasounds she had would not have seen. Dr. M referred us to the pediatric UCLA group for an immediate endoscopy. We needed to have a consultation with the doctor before the procedure. Upon meeting him we found that he agreed. There must be something there such as a web, growth, etc. We would certainly find it and hopefully be able to correct it with surgery. Although no one wants their baby to have surgery, I actually looked at it as best case scenario....we certainly did not want to be dealing with the alternative. The procedure was scheduled and we were optimistic.
We arrived to the hospital early and got to play games in the preop room. There was a lovely social worker who came by and chatted with us and brought toys for Charlie. Soon they came and started the IV's, then the sedatives. Boy, was she loopy. Ultimately, they took our still smiling baby in their arms and carried her back to the operating room where they do the procedure. She was placed under a full general anesthetic and intubated. We knew that going in. We were also told that the procedure would take no more than an hour and that they would be out to get us as soon as they wheeled her out so we could be there when she woke up. We sat there nervously waiting, watching the hands on the clock tick by. Close to an hour and a half later and we still hadn't heard anything. I KNEW something was up. Finally, they came out and said she was out but we couldn't go back yet, the doctor wanted to talk to us.
He met with us and said all went well on HIS end but that he didn't find anything, nothing, nada, zilch!!! My heart sank. I knew at that moment we had something on our hands that was going to be life altering. He sat with us for nearly 30 minutes explaining that he was diagnosing her with GASTROPARESIS. In lay terms, gastro = stomach and paresis = paralysis. He talked to us about all of our options both long term and short term....she most likely would never grow out of this, would need to be medicated for the long haul, may one day need nutrition from a feeding tube and that gastric pacing (a pace maker for the stomach) may be an option as she gets older as they currently are not used in young children let alone toddlers. A lot to take in...most of which I'm not sure how I remember. He explained that he had more tests that needed to be run in order to determine what our best course of action would be for now. At that point they took us back to see her.
The anesthesiologist explained that she had experienced a bronchospasm (a problem with the airway) while being intubated. They had to treat this at the start of the procedure which is what took so long. Poor thing was out of it but happy to be with us. We took her home for some good cuddling and lots of napping while awaiting the call to schedule the next test to determine how poorly her stomach was actually working and emptying anything that actually entered it. Unfortunately, this was only the beginning of tons of tests, procedures, doctors visits, etc. that would take us through the next several months.
{{hug}}
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