Ellie Louise

Surgery Cancelled Yesterday – Please pray for Wisdom

on November 2, 2012

Hello everyone –

We definitely need prayer for wisdom and direction today for whether we should have Ellie’s surgery on Monday.

I am so sorry that I wasn’t better able to keep everyone updated yesterday. I was having some technical difficulties with my email account and then I was watching Ellie very closely because she had gotten pretty dehydrated while waiting for surgery. I also had a time keeping her hands away from her face in the car on the way back after we were released from the hospital.  So I wasn’t able to really type!

We have heard so much from everyone about how Ellie was lifted up before the throne continually yesterday. Thank you so much for the individual and group prayers, the cards, messages, emails and texts. God was present with us in the pre-op area yesterday from the moment we got there until we left. Also to all of you who I do not know personally, but who have been following Ellie’s story ~ especially my friends from up north ~ I love hearing from you via the blog… feel free to leave a comment.. . or email me personally at charlottecushman@gmail.com ~ your encouragement is very welcome to our family!

Brief overview of what happened ~

Ellie had the VCUG test that she needed for the urologist. That test went well and we were sent up to pre-op immediately. While they were getting her ready, the nurse took her temperature and it was 100.4. This caused some concern and we spent some time go back and forth as to what that may mean both for the surgeons and from the standpoint of anesthesia.

As you all know, our biggest concern is that Ellie would be able to come off of the vent and breathe well after her surgery and was the reason we did not have these surgeries done while she was still in the NICU.

The anesthesiologist was concerned that Ellie was developing a cold or something. And apparently if something like this is going on when someone is put under general anesthesia it would be a situation where it could cause the patient to have to stay on the vent longer. Since the anesthesiologist was concerned about this and this was a specific prayer concern for us… we felt it was prudent to delay the surgery.

We have prayed all along that the timing for Ellie’s surgeries would be perfect, so I know that yesterday wasn’t the day. All along, God has provided clear indications about what we should do and I know that His plan is best and I will trust Him in it. We were surrounded by prayer and had many people who came to the hospital to support us. After we were released our group went to the chapel and prayed over Ellie and the whole situation. What a sweet time of praise, thanksgiving and reminder of God’s sovereignty over every situation.

I believe that through this whole process, the Lord took away my fear over this surgery situation. He knows Ellie and her frame and has a special plan for her. I trust His judgement and His decisions for her.

“But I trust in your unfailing love. I will rejoice because you have rescued me. I will sing to the LORD because he has been good to me.” Psalm 13:5-6

When we arrived home last night her temperature was 98.6 and this morning it was 98.9.

The hospice nurse just stopped in and felt like Ellie had some congestion in her left lung… so she may have something going on in there. What we don’t know is what the most important thing to fix for Ellie is. We will know more after our appointment this afternoon at 2 with the pediatrician.

Our prayer requests for today –

  • That we would get some direction about what is best for Ellie as far as surgery. Would it be better for her to get the ng tube out… so that she won’t have the extra mucus that comes with that? Or would it be better to wait? We need wisdom.
  • That I would be able to get in touch with our surgeon today soon (he has been paged) and that he would be able to coordinate with our pediatrician about the situation.

On a side note – I wanted to share something very special that happened yesterday.

We have a VERY wonderful surgeon. He did Ellie’s TE Fistula repair and has been very supportive of us in this journey with Ellie. He believes in the value of her life and has looked at her as a child and not as a diagnosis.

Yesterday most of the discussion about whether to proceed with the surgery happened before our surgeon came to pre-op. When he came down to see us, he smiled at Ellie and scooped her up into his arms. It almost made me cry… he treated her like she was his own child. Then he took her over to where the anesthesiologist and the rest of the team was just outside our area. They discussed Ellie while she was in his arms. You would not believe the difference it made to the countenance of each person and atmosphere of this very clinical environment. When they all returned to our bedside and we discussed cancelling the surgery and rescheduling – it was obvious – that Ellie was a special person.. not a hopeless, terminal baby with a diagnosis of Trisomy 18.  If each doctor could look at Ellie and all children with Trisomy 18 like that ~ dealing with each problem as it comes up instead of making sweeping assumptions ~ maybe we could change the statistics for these kids.

I am so grateful for all of the staff at the hospital and everyone involved in Ellie’s care and for the Lord directing each one of them.

We are also so appreciative to everyone who made the trip to Charleston yesterday possible. The prayer and the meeting of our physical needs ~ childcare, meals, cleaning help, gas money, hospice staff and all the sweet gifts for Ellie have made such a huge difference to us. We are grateful and glad to have you all to play a part in our little girl’s life. We continue to ask God to give us wisdom as we wait on Him for the next step.

Thank you to everyone –

Chris and Charlotte

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