We were discharged from our last admittance a day early on Tuesday (11/18/14). The attending cardiologist was originally planning to send us home Monday, but a late blood test showed Lucy's potassium was low. They were not comfortable sending her home so they planned to give her two doses overnight and retest in the morning. The morning test came back higher and we were good to go home. One dose of potassium was added to her daily regimen of medication. The doctors did not change much else aside from dosage on some of Lucy's current medications.Goofing around....with a diaper helmet
We settled into home life and looked forward to our therapy sessions the following week. But first we had our followup appointment. An x-ray to check for effusion and blood work to check her potassium levels were the main focus. The blood test indicated low blood sugar. Hers was forty eight. Just to give you some perspective, the low end of the range they like to see is sixty. Since this had nvever been an issue before Dr. Husayni ordered another test in two days to make sure this was a one time thing. Tuesday morning we had our physical therapy session which went great. We have a couple things to work on, the biggest being tummy time. Tummy time is becoming increasingly harder now that Lucy has figured out how to roll over. Oye! Lucy's speech seession was just as successful. Our therapist was a little worried that after our hospital stay Lucy would lose ground, but we picked up right where we left off.Wednesday we went to Elmhurst hospital for Lucy's follow-up blood test. We got home and I went to the grocery store to get some Thanksgiving food for Mike and I. We had decided it was too risky to take Lucy to family Thanksgiving during flu season. After a shower, I checked my phone and saw two missed calls from 708 area code (the hospital) and a voicemail. Her blood sugar: thirty six! When I called Dr. Husayni back, one of the first things he said was 'You're going to hate me'. I knew exactly what that meant. We were headed back to the hospital.
I can tell that Lucy has changed me so much: my outlook, my emotions, my reactions. I have learned that I need to be strong so she can be weak. I need to be a comfort so she can rest her head and cry. I need to hold her hand while she is getting poked and prodded and make sure she knows it will be okay. And no matter what I feel, I need to take a breath and smile for Lucy. She is also teaching me. With each obstacle we face a chance to grow. In the worst of days where she is pricked on the heal, in the arm and kept from sleep, she can bounce back a day later and give me some of this:
To correct her blood sugar issue, we have moved back to regular formula on a complete bolus schedule. That means no more continuous feeds overnight and we are getting up every three hours. Somehow it feels like a regression, having to get up in the middle of the night, but I know this is a step forward. Since the switch on Thursday, her blood sugar has stabilized. Now we wait to see if the surgery was a success and that no chyle returns. We have an x-ray scheduled for Sunday and if all looks good we are hopeful for a discharge within a day.
In the spirit of Thanksgiving
We are thankful for a God who has his hands so tightly wrapped around our little blessing
We are thankful for our prayer warriors
We are thankful for each other, family and friends.
This journey would be unbearable without all.
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