On Wednesday, January 30th, my wife suffered a cerebral arteriovenous malformation (AVM) rupture. She was immediately taken to the University of Iowa Hospitals where she underwent neurosurgery to relieve pressure on her brain. In second surgery, the artery that fed blood to the AVM was successfully stopped and she has since minimally responded to commands to move her feet and hands and eyes. It will be a lengthy recovery process, but we are very optimistic that her condition will continue to improve.
Today was a good day for Danielle. When awakened, She is responding to verbal requests such as ‘wiggle your toes’, ‘squeeze my hand,’ ‘thumbs up,’ ‘show me 2 fingers’ and ‘are you comfortable?’
She nodded when asked if she knew she was in the hospital and squeezes Matt’s hand tightly when she looks at him.
Danielle’s sedation medications were temporarily turned off today. She continues to respond to some verbal commands. She is wiggling her toes and moving her legs more.
Danielle got her first visit from the physical therapist this morning. She only spent 10 minutes moving around her arms, legs, hands and feet, but saw good signs and recommended that we get the ball rolling on getting her pre-registered at the acute physical therapy facility back home. While we are still weeks away from this move, I am told that a recommendation for this intense physical therapy this early on is a great sign that the doctors are very optimistic about recovery.
Another great day for Danielle. Good news came early this morning when the Neurosurgery team decided to do her MRI scheduled for Thursday today. Following the MRI was the removal of her breathing tube. She was a little shaky coming of the ventilator at first, but adapted quickly. Within 2 hours she was very stable.
With the removal of the ventilator also came the removal of the heavy sedative and pain medications, so within the next few hours she became very awake and alert for periods of time, followed by short naps.
After getting of the vent and the meds Danielle is like a whole new person. She is able to make fairly precise movements with her right side, answer questions by shaking her head or holding up fingers, stick out her tongue, and she even brought my hand up to her lips for a kiss. Her left side has not really come around yet, but given time and therapy there is no reason to think it won’t.
Since waking up more, Danielle has become much more aware of her situation, and like the rest of us, it scares her. She is very frustrated about her left side activity still being at a deficit and she shows a lot of determination in trying to figure it out. But through this frustration she’s been having what I’d describe as small anxiety attacks. The doctors tell me this is normal, but the stress it puts on her and her limited ability to express it is tough.
Today the physical therapist put Danielle in a chair and sat her up for 2 hours. The PT and the nurses were VERY impressed with how she did, especially for her first time in the chair. This will become a normal part of her day until she leaves here.
It seems the thing Danielle wants to do most is talk. When she gets herself the most worked up it’s because the nurse in her trying to offer input to the other nurses and doctors. At least 3 times today Danielle jumped in the conversation with the others. One most notable was when she specifically asked if she was being given potassium and how much.
As I am writing this I can see her trying very hard to move her left arm and is getting much better at it. 2/9:Danielle’s latest CT scan shows progress moving along as expected. Danielle had a short meeting with a speech and language pathologist today and should start to work regularly with her on Monday.
She is still having the neuro-storming which raises her blood pressure and heart rate quite a bit. The doctors say this is normal, and say it is likely caused by her becoming more aware of pain and/or frustrations about her limited abilities at this point. They are still working on what is the right amount of medication to get these under control without totally knocking her out. Yesterday she sat up in the therapy chair for 3 hours, fully awake without storming.
Also yesterday she kissed me. It was pretty great. We’ll probably do more of that soon.
Danielle has been taken off the heavy pain meds. Her storming is still ongoing and could take a while to subside, but it’s good that she is recovering from them on her on and not being snowed by fentanyl.
They have been putting her up in the PT chair for a few hours a day. she seems comfortable up there. The speech and language pathologist has been seeing her and has her eating ice chips. She likes those. I had a few too, they are ok. Yesterday I asked her to smile at me and I did get a little bit, so that was nice.
Everyone says that it just takes time and to be patient. We will see all around improvements over time and especially when she gets to rehab. We are still waiting on doctors to come up with a surgery plan. Hoping for some news on that today. There is a chance they will send her to rehab before the surgery and bring her back when she is a little stronger.
Thank you everyone for all you’ve done for us. The level of support coming from you all is simply unbelievable. We are lucky to have people like you in our lives.
For anyone who has expressed interest in donating to Danielle’s rehabilitation fund: http://pledgie.com/campaigns/19185