Juleen taught us all the steps to take before each tube feeding, and we were sent home with bags and bags of syringes and tubes, and of course prescriptions. Although Elijah's first episode of labored breathing was scary, we were able to see God's powerful hand in each situation. Elijah turned "blue" after being off oxygen, and that showed us what he was NOT supposed to look like. When we were leaving the hospital, something went wrong with the portable oxygen tank, and because of the first episode, I was able to realize that there was a problem, and we got the tank issue corrected before it was too late. Praise God for always having His almighty hand in each and every situation! We were met at home by the oxygen supplier, and by our Hospice nurses. We were set up with the oxygen machine, and talked with the nurses. We were just so glad to be home! Lizzie and Dylan had spent the last few days with friends of ours, and even had their first sleepover. We are still so amazed at the grace of God! He gave them such peace. Such understanding! They really stuck together through this whole journey. They didn't cry during their first night without Mommy and Daddy, and they held hands while watching a movie after Dylan had gotten sick. Tonight, Elijah closed his mouth when I kissed him, as if to kiss me back! I was so blessed!
"Be still and know that I am God; I will be exalted among the nations, I will be exalted in all the earth."
Psalm 46:10
Night seems to be the hardest. Neither one of us wanted to sleep. We wanted to stay awake and make sure Elijah was still doing ok. At 2am, he was having some difficulty breathing. We called the Hospice nurse, who decided he needed to have his oxygen put back up to what it was originally in the hospital, and we needed to give him the Lasix and Morphine (his 2 "as needed" drugs). Once morning came, our day was pretty relaxed, as much as it could be. We tried to create a routine. Elijah needed to take two different diuretics to rid his body of fluid, in order to get the fluid out of his lungs that was building up due to his VSD. He took one at 8 (am&pm) and one at 9 (am&pm). We weren't able to hear if his tube was in place, and he seemed to be sucking alright, so we gave him all of his feedings by bottle today. He did start to get upset, and it was taking too much energy for him to do all this sucking, so we were starting to get concerned. Thankfully Doctor Reagan (our family doctor) had arranged with us to come to our house everyday to check on him. He determined that we weren't using enough air to check the placement of his tube, so we started using more, and gave him the rest of his feedings only using the tube. We just wanted him to rest, poor guy! My milk finally came in more, and I was able to pump, but this really made a routine that much more necessary. Elijah needed to eat every three hours, and then I needed to pump in between feedings, as well as trying to remember to eat (that was the hardest part!). Lizzie and Dylan were so great through this, playing so well together, and staying quiet while the doctor was here. They continued with this good behavior the whole time Elijah was here, and even while he was passing.
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