Ginas Caring Bridge Post Day + 34 a minute ago As Maddie Grace just reminded me, tonight is our last sleep at ACH! We are scheduled to discharge tomorrow!!! Our girl has improved by leaps and bounds in the past several days and we are so thankful! She was able to eat more today and had minimal nausea. She also walked from her room around the nurses station and back. Our PT calculated it was over 400 feet! She will have no problem getting around our house for sure! Our doctor weaned her ativan and methadone again. He also had her feeds turned off completely. After some discussion, we decided to keep her feeding tube until she is able to discontinue all of her meds. Right now, she will be going home with six prescriptions all of which will finish in a couple of weeks. It would be a challenge for Maddie to take that many meds by mouth. The tube will make it easier on her to take what she needs without worrying about swallowing a pill or a yucky tasting liquid. Brad and I were taught how to administer them today, so it will be no trouble. She also still has her central line and it will has to be flushed daily. Right now, I think the plan is for us to work with our wonderful home health nurse again. There was mention of Brad and I learning to flush her line too. If so, that would make things more flexible until we can get it removed. We are scheduled to be back in clinic on Monday to have her labs checked. In all probability, she will need platelets. No big deal as we know we get to sleep in our own beds every night! We wil probably go to clinic twice a week until she no longer needs any blood or platelet transfusions. Then, we will go every four to six weeks for a port flush. Im thrilled to know we are going home, but I cant help but think about the next momma who will sleep on this couch in room 26. While our journey is about to follow a different path someone elses may be just beginning. The fight doesnt stop just because we arent here. I pray whoever is in this room can find the grace and comfort that God has provided for us. Please continue to pray for our girl. Pray she can continue to grow stronger everyday and regain her energy and appetite. Pray her need for transfusions is short lived. Pray she can continue to be healed physically as well as mentally, emotionally, and spiritually. This has been a difficult journey with some scary moments for her. Pray God will turn her moments of tests in to a powerful testimony. We love you all so and are so thankful for your faithfulness during our journey. I pray God blesses each of you. You all certainly bless us each day through your love, support, and prayers for our girl. Pray on, Team Maddie!
Posted on: Fri, 07 Mar 2014 03:50:09 +0000
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