Yesterday we came home.... After five weeks of living out of a hospital room, Monday we were discharged to outpatient status...and the craziness ensued....as you can see by the picture we have a good amount of meds to give Kiara multiple times per day. This gets complicated by her radiation appointments, she is sedated for them so cannot have anything after midnight until after radiation the next day. This means everyday her schedule changes and requires a focused effort on the timeline of her meds. Monday we discharged at 6 but did not get any formula for her feeds prescribed, in addition to this the hospital forgot to schedule our shuttle..this led to us scrambling for formulating and a ride...on top of that we had sent Kiaras meds home with Janet. 8pm rolled around and we were scheduled to give our first meds as responsible caretakers of Kiara....problem was we had no meds.... The next part is complete transparency and I didnt want to share but felt like I was supposed to....first I have an admission- during the five weeks living in a hospital room with Keren there have been a few occasions where I have snapped at her or talked to her in a dishonoring tone. Totally unacceptable but I kind of had given myself an excuse based on the stress of the situation. Honestly, the frustration is rooted in my own insecurities in caring for Kiara. Because Keren has an attention to detail that is amazing. She is such an amazing mother. So back to discharge story- we went back to our floor we were just discharged from to try and get help with Kiaras meds. Since we were outpatient they couldnt help us...the nurse whom we asked for help was very rude, in fact the way she was talking to Keren had my blood boiling...and wouldnt you know in that moment where I was ready to lose it, The Lord intervened....He impressed upon me 2 thoughts: first, oh, so youre the only one who can talk to her that way, and second, I feel the same way when you talk to MY daughter that way..Stop it! I share it to say- we are being sharpened in this process daily, and while our faith has never been stronger- we still are facing situations where we get to allow the Lord in to shape and mold us. We did get home and the work of prep, meds, baths, etc ensued and we got to bed after 1am. We had a shuttle pick us up at 7 am Tuesday morning for a full day of appts. While I was feeling completely exhausted and overwhelmed, being an outpatient allows you a better perspective of the day to day than being shuttled to and from your room. Kiara had a rough radiation day and coming out of sedation was tough. We just couldnt comfort her- these are my breakdown moments.....it was then in a waiting room where I saw it- almost all kids were there with one parent..I felt this peace come over me and I thanked God for Keren who is truly amazing in all of this- we are here as a family. All in it together! We are having wins daily- she ate 15 spoonfuls of orange juice, she is waving and shaking her head no. Her sense of humor never left- jokes of farts and poop always bring laughs. Tonight Kylie tried to kiss her and everytime Kiara would lick Kylies face...we were all cracking up. Feels good to be reunited with my family...thank you for the prayers and continued support.....we love you all Zzzzzzzzzzzzzzzzxxx Good nighzzzzzz
Posted on: Wed, 10 Dec 2014 07:43:42 +0000