Wednesday, July 16, 2014

Our Last Day at PCMC

It was finally Tuesday, hopefully our last day at the hospital. The night before Aleah slept in a crib for the first time by herself, with many interruptions and me soothing her back to sleep or nursing after her sugar was checked. Casey slept on a thin mattress on the floor next to me while I was on the couch. Our morning started out by an Asian accent telling Casey he couldn't sleep on the floor because of fire hazards. Another doctor not helping us out. She was the attending that day, I think, but I'm not really sure of what she said or what she was doing. We never saw her again.

I stayed asleep with Aleah while Casey showered and got us breakfast. Dr. Clements came in and quietly spoke to us while Aleah slept some more. (Poor girl was exhausted.) He told us that the diazoxide seemed to be working well and that after a few more blood tests, assuming they came back normal, we should be able to get home. We questioned him and he answered us patiently, taking an hour or so with us. He also said the diabetic specialist nurse would come in to explain the glucagon shot and blood glucose monitor.

I was dreading the blood tests, the idea of Aleah being pricked again. Luckily it turned out to be just a heel prick! While we waited for the results a nurse came in to explain the glucagon shot, an emergency shot that we could give to Aleah in case she had another seizure or her blood sugar dropped dangerously low. The results came back and her triglycerides came back way high, at 421 where a normal high would be 110. This instantly worried us because this could be a sign of a liver issue, which is associated with metabolic disorders (often go along with CHI). The test was ordered again and we anxiously waited, afraid we might not go home after all. Other family was planning on visiting but we felt like we were in limbo.

We were trained on the glucose monitor and then left alone to wonder. Our awesome nurse was on lunch so I couldn't bug her to check to see if the numbers were back. She came walking back and said, "Are you ready to go home?" I wasn't sure if I heard her right so I asked about the triglyceride levels. She said, "Let's check." She logged in and they were normal! She already had the discharge papers waiting for her when she got back. Too bad the doctors didn't stop by to let us know as I paced the halls wondering. My parents and Emilie came back to see us off, except at this point Aleah fell asleep so we decided she needed to rest while we got packed up. Casey took stuff down to the truck and I tried to let it sink in that we were finally going home.

The mood was lighter, relieved, happier. I finally felt like we could relax just a little, even though I knew our hyperinsulinism journey was far from over. Aleah woke up after a brief nap and we were finally ready to go after getting her dressed. We stopped at the pharmacy on the first floor to get her medication and walked out to the parking garage where we said goodbye to my parents and Emilie.

We haven't had any major blood sugar scares, but Aleah is definitely playing catch up for basically missing the first 6 months of her life. She's 8.5 months as I write this; it's been 2.5 months since we've come home. She's a different baby. Sometimes the first year of her life just seems like a distant nightmare, except for the fact that any time she starts to cry or I hear a baby cry I flinch and stress, thinking something is horribly wrong. I'll continue to try to update more on Aleah, but for now, know we're in a very good place.

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