The procedure was very successful. She will be in the ICU for a night or two, then hopefully back to rehab. She is experiencing pain now. She is saying OUCH alot and crying some. She is reaching for what is bothering her on her head – the many, many, many staples holding her scalp together.
Kathryn and i were so worried that she would not be herself for some time after surgery. . . . but she is already talking a little, holding our hands, and opening her eyes wide to watch us!! PRAISE GOD.
The primary nurse during Anne’s iniital stay in ICU is her nurse today – she was amazed at how great Anne looks and was blown away when she heard Anne speak!
- that there will be no complications from the surgery – no infections, no issues with the bone replacement, etc.
- that she would be able to get back to her rehab schedule tomorrow or the next day
- that she would not be in any pain
Anne is having a great day …singing along in her music therapy session and riding the bike in her physical therapy session. I think it’s been her best day yet!
Tomorrow is a huge milestone for Anne. She is having surgery to replace the bone flap that was removed the day of the accident. (The neurosurgeon removed a part of her skull to allow for brain swelling and sent the ‘bone flap” to a bone bank for preservation.)
Even though her doctor says this is a simple surgery, and kids usually do great afterwards…. IT’S STILL BRAIN SURGERY :-) But we are excited to get this behind us and get back to rehab.
Please pray that there will be no complications from the surgery (scheduled for Tuesday at 1pm). After one night in the PICU, Anne will be back at rehab on Wednesday. We are so thankful for this next step in Anne’s recovery!
Thank you all! -kathryn
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 :-)