Aysha 11/06/09

Aysha has been progressing in physical therapy. She still has a slight limp though. We had an appointment with the neuro-ophthalmologist last week. We were told that the eye is improving, although she has difficulty looking at upper areas in her line of sight without tilting her head.
She had a tutor from the school district come by five hours a week. The tutor mentioned Aysha is doing very well. We have clearance from the doctors for her to go back to school starting on 11/9/09. She will have restrictions on activity while at the school.

Aysha 10/02/09

Aysha's embolization procedure went well according to the doctors. Dr. Shaibani said he was able to fill in the most of the rest of the AVM to about 99 percent. The remaining 1 percent hopefully closes up by itself. At this point, there is no plans for radio therapy. We will have appointments with the doctors in 3 weeks and another angiogram in 3 months. Aysha is doing well, no weaknesses from the procedure this time. She will continue with her therapy and we will make an effort to get her started back to school in the next few weeks.

Aysha 9/30/09

Aysha is at CMH for an angiogram right now. We were told that while doing the angiogram there was a chance that based on what they saw embolization is a possibility. So just got information that surgeons are performing the embolization on the remaining or addititional AVM veins. At this point, they will not be able to tell us how much will be remaining, if any. There is always risk in these procedures no matter how little it might be. Even 5 percent risk of stroke is quite high. Please keep Aysha in your thoughts and prayers.

Aysha 9/8/09

Aysha is back from the hospital. MRI showed no major issues or bleeding. Aysha will have home tutoring from the school district starting soon for a few weeks. Her left leg is still weak, but its getting stronger. She will begin physical therapy on Mondays, Tuesdays, Thursdays starting this week. She also has an appointment with the neuro-ophthalmologist to checkup on her vision issues.
She will have another angiogram in a month to see the status of the embolization procedure. After that neurosurgeons will plan on the next procedure.

Aysha 9/5/09

We have spoken to Aysha's surgeon and neurologists. They have stated that the weakness on her left side was not stroke related. After her embolization procedure, there was swelling in that area. So that is the reason for the weakness. Currently, she has to go through daily physical therapy to bring her back to her baseline. She had an MRI today, doctors will review it today and possibly release to go home tomorrow. Still there is need for continual therapy, so we are reviewing our options on where to do that.

Aysha 9/4/09

All medications have been stopped. Intubation and catheters have been removed. Aysha is up talking and eating now. She has weakness on her left side. Not sure if this was expected, have to speak to the neurologist. She is a strong and brave little girl, but is getting emotional about her 'leg being heavy.'
Today she will be moved to the neurology floor for evaluation and exercises for the weaknesses. Thereafter release to go home.
Thanks for you support.

Aysha 9/2/09

Aysha's embolization procedure is complete. Dr. Ali Shaibani ( vascular surgeon) stated that the overall surgery went well. He was able to fill up 95% of the AVM area. This drastically reduces the chances of re-bleeding. Also the followup radiation therapy is now at 50/50 chance of happening. This procedure might not be needed.
Aysha is fully sedated and intubated currently and will be overnight. She is being taken for CT scan will be monitored until Friday.

Aysha 9/1/09

Surgery is tomorrow morning. Reporting time is at 6am. Procedure will take 3/4 hours minimum. Aysha will be fully sedated and expected to be in the hospital overnight at least. We are not sure what else to expect.

Please pray for her.

Aysha 8/23/09

So finally we have a date for procedures to start on 9/2/09. Our surgeon has conferred with his colleagues, he has taken MRIs, CT scans to conferences to discuss with experts. What we understand is that open surgery is not possible because of the location of the AVM. So they have planned on embolization to block of the AVM to reduce risk of re-bleeding. Then radio therapy to start the process to thicken the AVM thereafter. The procedure will take place at Children's Memorial Hospital in Chicago, with the radio therapy at Northwestern Hospital. Although the radio therapy session is not confirmed and we need more assurance that this is necessary right away.

http://www.neurosurgery.pitt.edu/endovascular/treatments/avm.html
http://www.irsa.org/avms.html

Aysha - 8/02/09

There is still no schedule for the surgery. Doctors are evaluating the recent MRI and angiogram. After the angiogram, the vascular surgeon gave Lia his perspective. He stated that his view is that embolization is the route to take and IF possible open surgery. We have an appointment with the neurologist with specialization in epilepsy on 8/8/09.
Aysha is doing OK, she did mention headache two nights ago when going to bed. It did not persist for long. We were told if this happens again and persists to take her to Children's' Memorial emergency room. I have not seen any improvement in the vision problems and often mentions double vision, especially when she is looking in angles at things.

Aysha - 7/07/09

Aysha had her appointment with the neuro-opthamologist. They stated that she did have some damage to her optic nerve. But apparently its still functioning well enough that her vision has not degraded much at all. The issues she is having is not able to look at higher areas in her line of vision without tilting her head up. Hopefully this improves with time. There are other problems but thats the main one right now.
On 7/8/09 she will have the arteriogram at 23o PM in Childrens Hospital in Chicago. She is supposed to be fully sedated for the procedure. And possible hospital stay after that.

Aysha - 7/01/09

We received a call from the nuerosurgeon today. Dr. Alden talked to his colleagues. He mentioned there is another possibility now, open surgery to totally remove the AVM is an option now. He stated the gamma knife(radio surgery) is effective maybe up to 80% after a 3 year period, after that another session may be needed. But of course, chances of re-bleeding are still there in the meantime, as it is now. So, MRI/angiogram/ct scans are being scheduled for the next few weeks. And choices to make thereafter on the path to take.

Aysha - 6/16/09

No real updates yet. We had met with Dr. Alden on 5/27 and he said call back in two weeks. He was going to meet with his colleagues, discuss this case and propose the plan of action. He was to speak to Dr. Hunt Batjer, who is the chairperson of the neurology department at Northwestern.
Aysha's is already done with Kindergarten. She has also completed her OT/PT at RIC. We have to make appointment with neuro-ophthalmology to check on the occasional double vision and squinting problems she is having.

Aysha - 5/27/09

Aysha met with Dr. Alden at Children's Hospital today. He will look at the CT/MRI CDs in detail. He will also confer with other more experienced surgeons to discuss the best plan of action. She will also have to meet with neuro-opthomologist to check into eye/pupil movement issues.
Aysha will attend a few hours of school a day to finish of her kindergarten year.

Aysha - 5/17/09

We want to give thanks from the bottom of our hearts to all our family, friends, colleagues for Duas, prayers, thoughts, concerns, visits, calls for Aysha. All of your assistance in every way is greatly appreciated. Thank you.
Aysha is progressing well. Doctors decided that she didn't need speech therapy any more, so she has two times a week now in OT/PT. To be clear, she has full mobility albeit some slight unsteadiness at times. Doctors have told her to 'keep both feet on the ground' so to keep her activity limited in the near future.
Aysha has an appointment with the neurosurgeon on May 27th to start planning on the surgery. Dr. Alden is associated with Northwestern University and Children's Memorial Hospital. We will have to understand the pros/cons of embolization and radiotherapy.

Aysha - 5/10/09

Aysha is back home. No incidents or major concerns in-route. OT/PT starts Monday at RIC- willowbrook . She is doing well, but gets emotional since she is not being allowed to be as active as she is usually. There is noticeable general weakness and less mobility. Her vision seems to be getting better, she has a patch that is being alternated between eyes.

Aysha - 5/05/09

Aysha is doing well in physical/occupational therapy. They are preparing for discharge tomorrow. We are planning on heading back this Friday or weekend. She will need to start reporting to RIC, so far they are saying it will be outpatient basis. And then we have appointment to meet the neurosurgeon and start discussion and planning on the AVM treatment/surgery.

Aysha - 5/02/09

Aysha is progressing well. She is eating 'mechanical soft' food now. Her first phase rehab is under way, she is working with occupational/physical therapists to bring her mobility back. Rehab doctors will evaluate her next week to assess where she will be headed. And how she will need to be transported. If it will be inpatient or outpatient. Most likely it will be Rehabilitation Institute of Chicago for at least a few weeks though. Then the AVM surgery will be planned with doctors in Children's Memorial thereafter.

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.