Aysha - 4/29/09

Aysha is doing better. She is communicating well. She is able to stand and walk for short distance with help. She is eating pureed food on her own now, although the NJ tube is still in and supplements her intake overnight.
Neurologists want her to start rehab now, this will entail more exercises to return her to normal levels. This will start here in Columbus and then continue in Chicago area.
We will also need to follow up with ophthalmologist as her visual area is limited to lower areas and she needs to angle her head to see some things. God willing, this will get better with time.

Aysha - 4/27/09

Aysha is gradually improving again with the Chlonazepam. That will continue for the near future. She is interacting and communicating again. Neurologists say that the vision area should improve with time, she does not have complete movement of the pupils. Doctors want to start rehab. She is quite weak and somewhat more weak on the left side. Also they are planning transfer to Chicago area rehab centers soon. And plan the surgery thereafter, most likely in Children's Hospital of Chicago.

Aysha - 4/24/09

Aysha was taken off the two epilepsy drugs and was started on another - Chlonazepam. The other drugs she was on didnt improve her in responsiveness at all, it only controlled the seizure activity. This new drug seemed to improve alertness much more. There was no response from Aysha from Monday night to Thursday before this new drug was started. The side effects are too many to list, but this is affecting her motor function tremendously. She is able answer short questions. Her vision is still limited.

Aysha - 4/23/09

Aysha has been put on Dylantin and Phenobarbitol. These are to control the gelastic seizures. These contain heavy sedatives so she is not responding and have been sleeping alot. She also is being monitered continually on EEG. This is to check for brain activity and possible seizure activity.

Aysha - 4/21/09

Aysha had receded in her progression. We are very alarmed. Sunday she was answering simple questions, interacting and able to see. Yesterday and overnight she had uncontrollable laughing spurts and vision totally deteriorated and she was not answering any questions.
So CT scans, EEG and MRI was taken earlier today. Nothing significant on those as the neurologists notice. But in the morning nuero gave her a shot of Ativan, that immediately improved her alertness and improved responsiveness. They stated she suffered from Gelastic seizures. They will continue with further treatment for this disorder. It seems that the neurology department is excruciatingly slow in diagnosis and plan of action. They need to be more proactive and should be telling me what is happening and be aware of her alert levels and progress, instead of us telling them.....

FYI. The onset of this ordeal was not that she fell down and hurt her head. The AVM rupture and the bleeding inside caused her to lose balance and probably fall. This is a congenital defect that had no prior indication and warning of any kind.

Aysha - 4/19/09

Aysha is still in the neurology floor. Her regular medications were weaned off today. It will be as needed now. She still has the NJ tube pending testing tomorrow to check for proper swallowing, then maybe the regular feeding method will start. She whispered she wanted her favorite doughnut.
Family members have been getting her involved in different communication and games. Many have been reading to her. She seems to understand most everything. Voice is still weak. She has walked to the bathroom with some help. Her vision is probably weak and might be seeing double.
Neurologist is considering transferring her to Chicago hospitals, since we are from there. He will consult with doctors there to plan the necessary procedures/ surgery that will be needed.

Aysha - 4/16/09

Aysha is now in the neuroscience floor. This floor is for short term recovery from brain injuries. There will be more evaluation and therapy here. She is still feeding via NJ Tube. Speech therapist still needs to test her sometime before regular type of feeding can begin. Nurses here stated that recovery for this type of major accident is minimum six months. There is no exact time lines of course, each case is different. Then there is recurring issues....
Aysha has control and conscious of her bladder. She gets antsy when she needs to go. This is a good thing. She is recognizing many things and people. She does have double vision it seems like, but she hasnt been able to explain it that yet.

Aysha - 4/15/09

Aysha did not move to neurology department yet. She is still in ICU. She is still very tired and groggy. Her vision is still unclear at this time. So that is a big concern. She understands many commands. She pulled out her NG tube so they will have to put it in again and start the feeding. Also the testing for swallowing did not happen since she is very lethargic and they can not perform that test unless she is more alert for more than 30 minutes. This test allows them to verify if the food she eats will go down the esophogus instead of the larynx. So many things to worry about....

Aysha - 4/14/09

OT and PT came by to have her sit up and stretch. She is doing those fairly easily. Aysha is on other drugs now, like methadone and others. These are supposed to help with the withdrawal symptoms of the other drugs she was on for so long. These drugs and not being on the previous ones are giving us some scary symptoms, like headache. Earlier tonight she threw up, another concern. ICU docs and neuro docs don't seem to be concerned. Her vitals are within normal ranges. And the headache symptom ,they aren't worried about as much - somewhat expected they stated.
She has been sleeping and waking up periodically. When she does, I try to ask questions that gives me her alert levels. So far she has responded well.
Earlier in the day she asked about her little brother Ryan, they haven't seen each other since 4/2/09. Tomorrow Aysha probably moves out of ICU and into neurology department if everything goes well. PT is on the same floor and they are supposed to start their work.

Aysha - 4/13/09

Most of the sedation medication has been weaned. IVs from both arms have been removed. Intubation tube has been removed now. The swelling from the lips and tongue have gone away. She has been answering yes/no questions appropriately. She was able verbalize certain things. She asked for her Baba, Mama. She wanted me to 'kolay' - she wanted me to pick her up. Her voice is weak as expected because of the tubing in her throat for more than 10 days. She does not like the NG tube, that has been making her upset. Her vision is not clear yet. Inshallah, that will clear soon.
Next few days, she might be out of the ICU and into another area of hospital. Maybe next few days we can have her sitting and standing up.
Thanks to everyone for wishing her well and praying. This ordeal is far from over, but God will be watching over her. Doesn't make sense for a child to go through this experience.

Aysha - 4/12/09

Aysha's medication is being lowered slowly. She sometimes wakes up now. She is much more alert and reactive when she wakes up periodically. She answered a few yes/no questions by nodding her head. Of course she is scared, uncomfortable and in pain. Her eyes are not fully open yet. RNs stated that the pupils are slightly reacting now. They have put in naso-gastric tube now for feeding purposes. The ventilator was just lowered all the way down, Aysha is breathing 99 percent by herself now. The arterial IV was removed just now. Next step will be the intubation tube, that might be tomorrow.

Aysha - 4/11/09

Aysha is still sedated, medication in continuous drip. So far the NaCl drip has been stopped, plan is the stop sedation medication in the next days depending on the ICP levels and other factors.
The CSF/blood tube has been removed from the cranium. All antibiotics have been stopped. Versed is being slowed down by .05ml and will continue by that rate daily. Its currently at .25ml.

The tongue and lips are swollen from the first few days on. But RNs said that is normal, but we have so much other things to worry about that are much more critical.

I never thought a 6 y/o can a have a spontaneous brain hemorrage. I understand if there was a car accident or blunt force trauma. But this AVM, I could never imagine.

Aysha - 4/7/09

So many family members have visited. Everyone is praying and wishing for full recovery. We appreciate everyone's prayers and concerns and with assistance. Also all those keeping Aysha in their thoughts and prayers from far away. We feel helpless, all we can do is be here for her and keep praying. There is no answer why this happend. We pray to God that he helps our little girl.

MRI showed that the AVM is about 3cm located in the right thalamic area. Doctor mentions this is better than left side since Aysha is right handed and her dominant side is the left side. Also there was no shifting off the ventricles, something positive.
4/9/09
Angiogram shows the flow of blood from the arteries to the veins. In this case, it will the the 'feeding' arteries of the AVM. So neurologists will have a better idea what type of therapy/surgery to plan. The angiogram still show the AVM to be about 3cm wide. Currently neuro is thinking about radiation therapy instead of embolization. Radio therapy (gamma knife) consists for the AVM to thicken and close off with use of radiation.
http://depts.washington.edu/neurosur/ptcare/radio.html
Embolization consists of using some type of glue, alcohol to close off abnormal vessels.
http://www.birthmarks.us/embolization.htm

4/10/09
The draining from the brain has stopped. ICP has been fluctuating radically, concerning the doctors. Another CT scan ordered. It showed that there is nothing more to drain and that the ventricle have collapsed on the catheter therefore nothing else coming out. So the catheter will come out soon.

Aysha - 4/4/09

Aysha fully sedated to keep her ICP numbers low and continue discharge from the brain. Versed now started at continuous drip. This will allow her brain to rest and help in dissolving the clot.

4/5/09
CT scan scheduled 930am. There is blood in the stomach because of the medications given. Therefore Zantac started and previcid type of medication given. Aysha also has fever that is trying to be controlled by cooling blanket underneath her body.
CT scan showed no additional bleeding spots. Existing blood clot is slightly smaller than before.

4/6/09
Full sedation continues. Right pupil slightly responsive. Neurologist's plan is to keep sedated next couple of days at minimum. More antibiotics were added to fight possible infections.
Angiogram is being planned on 4/9/09.
Occupation therapist and physical therapist have come by to put on boots on her feet.

Aysha - 4/3/09

Aysha not fully responsive. Some response when given easy commands. She is scared and tries to get up and look around. Too much stress and pressure on the brain. Neurologist puts her on full sedation medication overnight. She has limb movement and control before that. Pupils still constricted. MRI shows location of AVM, right thalamus. Its very deep and near center of the brain.
She is on long list of medications including versed, fentonyl, antibiotics. IVs in both arms. Central venous line to monitor blood pressures. Catheters from the brain to drain blood and CSF (cerebral spinal fluid) and monitor ICP ( intra cranial pressure). Also she is in respirator to assist in breathing through the intubation tube put in by EMTs in the ambulance.

Aysha - 4/2/09

4/2/09 - 5pm est. Columbus, oh. Aysha says she fell down and hurt her head and complains of headache. (Now our understanding is that she didnt fall and hurt her head, but she had the rupture inside her brain that probably caused her to maybe fall. Main problem being the AVM). Lia immediately senses urgency and tells me we should get this checked out at ER. As soon as she says that, Aysha throws up multiple times. She hits her forehead with her hand multiple times because of the intense pain and blanks out. No response verbally. I decide to call 911 instead of driving to hospital, EMTs decide on airlift since she is a child and its rush hour. Aysha taken to Children's Hospital.
~8pm est. CT scan in ER. Neurologist suggest its AVM -Arteriovenous malformation. Blood formation in right hemisphere and blood clot also formed. Cranium drilled to release pressure on brain. No response from Aysha since before collapse, no eye contact, no focusing of sight. Pupils constricted.
Family members start arriving overnight to help with this ordeal.