Today was an eventful day. Anne had three goals to meet before being moved to rehab:
- Good breathing
- Good eating (via the feeding tube)
- Removal of EVD
As of this morning, she met the first two goals. So the plan for today was to work toward removing her EVD. The EVD is what the neurosurgeon inserted into her head to drain spinal fluid out of her brain. In the beginning, this helped reduce the pressure in her brain.
Over the last few days, the goal has been to raise the drain higher and higher so it drains less and less – and then finally to clamp the drain. After they clamp the drain, they moniter her for 24 hours, do a CT scan, and if everything looks good – they remove the drain.
Removal of the drain equals ticket to rehab :-)
So they clamped her drain this morning, but as the day progressed, I didn’t see her making the tiny steps forward like she had been doing the previous days. Her eyes didn’t impove. Her tremors increased and she just seemed more agitated. The neurosurgeon decided to unclamp the drain and wait a few more days and try again…
So we wait… AGAIN!
But, I think they plan to move her to a room on the neurology floor either tomorrow or Saturday. She doesn’t need to be in ICU anymore, so they will hold her in neurology until her drain can be removed – and THEN she can be admitted to rehab.
God’s ways are much slower than I prefer, but given the choice, I choose the creator of the universe and His plan for Anne over anything I might come up with. He is our good Father, and we will trust Him. He has preserved her life. He has a plan to prosper her, to give her a future and a hope. So we wait and trust.
Thank you for traveling this road with us. We are humbled by the outpouring of love we have been shown. Please pray for anne’s healing and for strength for all of us to persevere as we wait and trust.
I don’t have an update on Anne. My mom stayed with her last night. I will go to the hospital shortly to relieve her. I won’t have a computer with me, so I won’t be able to update the site…
My prayer for today is that Anne will show us something new. So far, she’s made the tiniest little steps forward. She was swallowing on Tuesday. On Wednesday, I saw the slightest bit of anger in her eyes. So I hope I see a little more of Anne today.
Anne will be a candidate to move to rehab either Friday or Monday. We’re excited to begin this next phase in the journey. From what I hear, they work their patients pretty hard. Anne’s going to need a lot of encouragement from us.
We’re also hoping that Canon and Kate will be able to visit and help Anne when she is in rehab. They miss her terribly.
Thank you for your prayers and words of encouragment. They are so meaningful to us.
Yesterday was quite a day. Little Anne still does not seem to be able to move any part of her body upon our request. She is still having difficulty moving her eyes, but it looks like she is really trying hard. The OT came in and moved Anne’s arms and legs. She moved her arms like a ballerina, and she moved her hands like she was coloring a picture. . . . the rush of emotion seeing her move like this was overwhelming. . . . how I so want my little girl to be able to do these two things which she so loved to do . . . .
We are hoping that Anne will be moved to rehab on Friday. It will be a wonderful move, for Canon and Kate have not been able to see Anne for 16 days since she has been in ICU. In the rehab unit, Canon and Kate will be reunited with their sister for the first time since April 13th. That will be a wonderful and tear-filled reunion.
Little Anne had a restful night. At times she seems to be trying to focus her eyes on me if i am in her field of vision.
i am praying she will know us and be able to speak. Most of all, i am praying that God will be close to little Anne, that she will continue her budding relationship with Him, and be able to experience his presence.
May i rejoice in Him and His joys today. i have never been able to spend such concentrated time with Anne, may i use it wisely.
Anne had a good day today. An x-ray was done on her neck and it was determined the neck brace could be removed. Her anti-withdrawal med was reduced a bit more today and she had more periods of wakefulness. She seems to be moving her mouth a little and seems to swallow at times. Her eyes now can open wide. The rehab docs told us to move into her field of vision (since she can’t yet train her eyes on us), then let her attempt to focus. Next to move to one side to her her begin to follow us with her eyes. This will help to train her brain to use her eyes.
Anne is stabilizing. Now that she is off the ventilator and breathing well on her own, their next goal is to increase her feeds to what she needs for her weight. If she can tolerate the increased feeds, she can then be moved to rehab – hopefully by the end of this week…
Rehab is where they will begin the slow process of retraining Anne’s brain. We pray that she learns to swallow, use her eyes, limbs and voice. There are a lot of unknowns. All the doctors will say is that with this severe of a brain injury, there will be some deficit – to what extent, they don’t know. Every child is different.
Please pray for Anne’s healing and for us and Canon and Kate to deal with the sadness of Anne not being with us at home. Also for all of us to take one day at a time as we wait for God’s plan for Anne and our family to unveil.
Last night, Canon prayed, “Lord, we’re not asking you to make Anne perfect, but please make her good.”
Little Anne is sleeping quietly this morning. She is now off all sedation!! She is having some trouble breathing without the ventilator, but it may be because her throat is swollen, and due to fluid in her lungs. She seems to be having fewer tremors and is requiring less withdrawal meds.
We are so blessed by all of the prayers that are lifted up for little Anne, and all the people that have connected with us. We have great hope when we stay in the present and rely on God, but can despair when speculating on the future. May we rejoice in God’s goodness today.
To see Anne breathing on her own is a miraculous gift. We are so grateful. Tomorrow – and all of its challenges – will come. But today, I have seen God’s goodness in the land of the living!!! This is the day the Lord has made. Let us rejoice and be glad in it!!
Happy Sunday everyone :-)
This morning the nurses are working to remove the ventilator.
Right after the ventilator came out of her, the words i heard on the praise music CD playing in Anne’s room: “This is the air I breath – your holy spirit living in me”. God supplies all we need!
God has answered the following specific prayers:
- Anne is alive! The first night we did not know whether she would make it.
- Anne woke up! The doctors did not know if she would ever regain consciousness.
- The swelling in Anne’s brain has dramtically reduced
- Anne’s sedation continues to be reduced and she is responded well to it.
- Because of your guestbook entries, those scriptures help Kathryn and me know what to pray.
It is hard to tell if little Anne recognizes us yet. I think she may respond to Kathryn’s voice at times. She opens her eyes, but she doesn’t seem to be able to focus on us. This is very hard to see. I so want my little girl to be able to run and play and dance. . . . but i most want God’s plan for her, whatever that may be.
We pray that her brain will heal. I know God will take care of my little girl in His way, and in his timing.
Still reading through and praying over Mark 5 and Luke 8.
I simply cannot express the joy, hope, and encouragement that your “guestbook” entries mean to Kathryn and me. I often read them multiple times and the scripture really helps me know what to pray.
The docs have a goal to wean Anne totally from the sedation and the ventilator by tomorrow evening. We should pray that will go well. Also pray that she will tolerate her nutrition because she so needs it. Today marks 11 days of heavy sedation. Pray she is able to come off the narcotics with minimal withdrawal.
Anne still has so much healing she needs to do; it is hard to see her opening her eyes, but not being sure if she is recognizing us. Pray God will heal Anne’s brain so that she may know God’s joy!