The doctor called both UVA and Wake Forest today to check about Waverly getting the nissen procedure at both places. The UVA docs said they'd be several days before they could get to her, at the earliest. And the Wake Forest doc said he wanted to wait for her g-tube site to heal up more before another operation, so both places wouldn't be able to operate until the surgeons are back here anyway. So, for now, we are keeping her where she's at. They had her feedings cut off today, and will start back with just a little bit for now, and see how she does. They'll continue to manage the reflux with medications and other management techniques in the meantime, while we wait for surgery to be scheduled. She's getting most of her nutrition/fluids through the IV, and they will start a PIC line (like a longer-term IV) on her tomorrow (because they are running out of good IV sites for her).
We heard some hard but honest words from the doctor and nurse today. He talked about how we are seeking to improve her quality of life, for the time that she has, and spoke of how limited that time may be. He spoke of wanting to get her home as soon as possible so that we do have some time with her. Of course, only He knows, and has already planned, this little girl's life. But those words are hard to hear. I am so thankful for a good nurse today, who was a believer and empathetic, and told me of her own daughter who wasn't supposed to live past the age of 2, but is now 9 years old. In the midst of so much pain and hurt, God has still provided so much support and love to us. Thanks for being a part of that...
It is amazing how God provides strength when we feel we have none. I pray that Waverly will soon be home in your arms. I can only imagine how hard it must be to hear the words that no parent ever wants to hear.
ReplyDeleteThinking of you as you continue this journey as a family.
Diana
Hi, our friends the Nolls told us about your sweet Waverly. We are friends of theirs from RTS and church. Our family will be praying for you all and Waverly in the days to come. Praying she will be able to join you at home soon.
ReplyDeleteKim and Donny Friederichsen
Don't know if you remember us. My husband Brandon is a friend of Johnny's. I am following your posts with heartbroken tears and hopes for many miracles in Waverly's life, beyond the beautiful miracle she already is. Know that your whole family is in our prayers so many times every day. The LORD is our refuge and strength, a very present help in time of trouble. Ashley Harris
ReplyDeleteOh, honey....but praise God for sending you that angel of a nurse. I will pray for more sweet nurses. I pray for all five of you, but especially for Jackson and Kathryn. It seems they are the ones God would have me pray for as He often brings them to mind. I do pray she can come home SOON so y'all can be all together as a family. xxoo
ReplyDeleteWe are praying for you all and will continue to ask for strength during this trying time. You are His and He will take care of you. Cast your cares upon Him for He cares for you! Even though we cannot truly identify with the thoughts and feelings and decisions you are having to go through, God knows and will continue to be your Rock!
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