To read Lenah's story from the beginning, just go to the side bar under blog archive and start reading from May 2013.

Sunday, December 8, 2013

Sunday, December 8, 2013 Update

 Well, we had a bit of an exciting night last night.  On Friday, one of the lumens or ports on Lenah's picc iv line stopped working.  So, whenever I needed to give Lenah a dose of medication, I would have to detach and re-attach her TPN fluid.  Last night, a while after midnight, the other lumen stopped working as well.  So we had to take Lenah to the ER in Nacogdoches to see if someone could get her line to work again.
  Our triage person  (I'm not sure of his actual title or designation) was extremely kind to us.  I was afraid that once we arrived people would freak out at Lenah's appearance and vital signs. We arrived there about 2:45 in the morning  and there were no other people in the ER.  We were pleasantly surprised at this. We got back to the farmhouse a bit before 5am.  I am so thankful that James had taken a long nap in the afternoon before this all happened. He was alert driving us there and back.  I, on the other hand was brain numb from lack of sleep. Lenah woke up while we were there and showed her sweet little personality. They were able to get Lenah's line going again, but we will probably have to take Lenah back to Houston to TCH to have a new line put in.  James called and spoke to one of Lenah's doctors and we were told that they would start the process Monday morning of trying to get her scheduled for a new picc line.  Lenah must have a good long term line as she is not able to take anything by mouth because her digestive system does not work well due to low blood/oxygen supply.  She has to have IV fluids/nutrition and medications all the time.  Her line had been acting up before we left Houston and was re-worked on Monday.
  Lord willing, James will probably drive back Wednesday night.  Then, he and I will drive Lenah to Houston early Thursday morning.  Hopefully, I will be comfortable with changing Lenah's IV fluids by then as we will be gone all day and she will need her TPN replaced at some point during the day.
  She has been breathing well and her heart rate and oxygenation have been within her proper range.  Today, though, she has seemed out of sorts and cries easily.  She just seems like she is feeling unwell.
  James headed back home this evening and Papa will drive to Houston in the morning.  Please pray for us as the children have seemed restless and are acting out a bit.  I'm sure they are feeling the stress of the situation as we are.  They are all aware that Lenah is very ill and that she is dying.  We have been given quite a few books and resources for explaining things to them and the hospice social worker has resources for us if we need them.


  1. It is Never easy on a child. And they say those that are the sensitive ones will sense more when things around them are not Quite right. I am Saddened to hear that she is so uncomfortable. Was hoping they could get her pain free. Our Grand children and my son and his wife live with us. I was visiting the Sweet Lenah last and my 9 and 11 year old Grand daughters came out of my room from talking to their grandpa and ask who she was. My 11 year old grand daughter asked what was the matter with her so I went and let her read your posts. She said that God need to be Nicer to babies. They Don't need to be that sick. That God needs to Heal her. I said Well some are just born with Conditions that even Doctors can't Fix. She told me when SHE gets big she is gonna make it to where babies have to be fixed. I said posible She said she is so Cute. And fell in Love with baby Lenah. And asked if she could add a prayer for her in her prayers last night I said Most certainly. Sometimes GOD listens to Children before he does us adults.

  2. Lenah does have pain medication. We just try to not over-sedate or over-medicate her. She does still interact with us and enjoys being kissed and cuddled. She especially love neck kisses. It just seemed yesterday that she had more discontent episodes than she previously had been having. Today has been better.

    1. Still praying for you all and healing precious Lenah,,, Your family has been a blessing to me..

  3. I remember praying and requesting prayer the first time for Baby Wray when my father shared the prayer request with me. I have continually prayed for her and the family during this difficult time. I have shared her progress with friends, family and church family. I still have faith God's plan is in works whatever way that might be for precious Lenah. I pray for God's strength for you and the entire family. I pray His comfort and peace sweep over each one of you and to surround Lenah.

  4. I am glad she is still alert and not so out of it from medication. I love the pictures she is such a Sweet little girl. So precious. It just breaks my heart her time is limited with the Ones who Love her so dearly. It is always harder on the other children. We lost my sister to Cancer Dec 7th 2012. And my grandchildren lived with us at the time. They had never met my sister she lived in Virginia. We are in Arkansas. But They would come home from school and ask about her each night. Then I went 2 or 3 weeks without saying anything. Because it was close to Christmas. And I told them she had Past away. But I did not want to ruin every ones Christmas. It is extremely hard on them in the Holiday season.