Last night we were discharged from the hospital to the care of a hospice group in our area. After we arrived home it took a while to set up equipment, sign paper work, and receive instruction from Noah's nurse. Once Noah was given all his nightly medications the nurse left John David and I with the night shift. We have never experienced infusions outside of a hospital setting, and Noah's new backpack (plus an additional pack of fluids after 8pm) have almost become a new member of the family that cannot be left behind! Noah hasn't realized that the bag has to go anywhere he does, the bathroom, the bed, the floor to look at toys...I'm praying he will accept this new discomfort and see it as his helper and not a hindrance. Our night was long and somewhat sleepless due to the pump malfunctioning and Noah vomiting, but if today is any indication of the future we are on an uphill climb for now. He slept late this morning, but woke up in time to welcome his aunt and uncle, and he spent about 3 hours sitting up on our sofa visiting with them and showing off all his new Star Wars toys that were waiting for him on our front step last night. Since being home Noah has done more walking and had longer periods of alertness. The hospice nurse will come each morning and evening to give him IV medications and set up his nightly fluids, and also will also be on call for anything we may need in-between. This is such a stressful experience, and I had to ask God this morning for strength only for the day. I cannot try to imagine the days ahead because I overwhelm myself. I had a few minutes to myself this morning while Noah was sleeping, and I thought about all of the mothers who care for children who require the special care similar to what Noah now needs, mothers who do it day in and out because their child has a life-long illness, and I just cried for them, and for myself. This is hard, and my body is weary after only one day. But I know I can do this, I have seen others do it, survive it, and continue to give God praise, even though the situation is devastating. God, just give us strength. Lord keep sending your precious servants to help us, whether it be family or stranger; we are so humbled by and thankful for the acts of kindness we have experienced and the love You have shown us through so many. It is good to be in this family of God, where we are not divided by denomination or theology, but united in love for the Lord and love for a little boy named Noah. Thank you for walking this road with us!
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.