AVM: Our Family's Nightmare

Established April 15, 1995
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Natasha and Sedgy

My name is Maureen Pfaff, my husband Donald and I have a daughter with an AVM. Our family lives in Gig Harbor, Washington. Our 10 year old daughter, Natasha is surviving the ordeal of having an AVM since she was 4. It was then that we were told she had Wyburn-Mason Syndrome, a very rare blood vessel disorder that involved having multiple AVM's in specific areas, particularly in the retina of the eye. She has been through five brain surgeries and one gamma knife surgery in a period of one year after we finally found two neurosurgeons willing to work together to help our young daughter. She was 6 years old at the time and just in the middle of first grade when her and I left her dad and two older brothers to go to Loma Linda, California. We were told it would be two or more surgeries to reduce the size of her very large AVM so that the remaining portion deep inside of the hypothalamus and thalamus could be treated with the Gamma knife. It was not two but five surgeries she underwent, one after the other, all about 6-8 weeks apart. It had been two years since she had the gamma knife surgery and was making steady gains in physical, occupational and language therapy, when in March of 1998 she had a small bleed.

Our Family's Nightmare

9 November 1998

Our family's nightmare with this thing called an Arteriovenous Malformation started about 6 years ago... My daughter, Natasha, has one of these "ticking time bombs". She is a beautiful 10 year old struggling with surviving with an AVM and has done a tremendous job. I can not tell you how proud of her I am. She was 4 years old when she was diagnosed; she has a syndrome called Wyburn-Mason Syndrome. It involves having more than one AVM, with one located in the retina of the eye. She had one in the left eye that followed the optic nerve back to the thalamus in the midbrain and one in the tip of her nose.

The way she was diagnosed was by chance really, she never realized she was different from anyone else; she thought everyone had one eye that could see and the other didn't, at least until that day, the day her hair was long enough to attempt to style it the way Julie wore her hair. Julie her little friend, wore her hair in a pony tail on the side of her head. I was so excited it was finally long enough (her hair grows tremendously slow!!) that I told her to go into the bathroom to look at it. She said "cool", then I told her to look sideways so she could see how it looked from the side, but she kept turning her head back straight to the mirror. I held her head and said "keep your head here and look with your eyes into the mirror". She gave me this funny look and said, "Mom, that eye don't work!" (as if I was to know that) and I remember telling her to stop kidding around and look with her eyes, she had a real funny look now and said it again... I was beginning to believe her now... I held my hand over her right eye and asked her for the first time ever (she would be asked this more times than I would ever imagine in the years to come), "how many fingers am I holding up?". Right then I could tell something was wrong, her eyeball just floated off to the side and she told me she couldn't see anything. I was devastated, calling to my husband to come quick. He too was shocked and we together gathered our composure enough to get on the phone with our family doctor.

We saw one of his colleagues within an hour and as we knew before we arrived he informed us that Natasha was blind in that eye and he was going to have an Ophthalmologist see her as soon as possible. We waited while he called one in his office and he came back with a book, a medical book with exactly what he saw in her eye. He showed me the picture and referred to it as a tangle of blood vessels and it looked like a pile of worms to me. He told us the Ophthalmologist was waiting for her and to go right away. So on Good Friday at 4:00pm, we rushed to get to her office before she left. Upon examining her she informed me of the same thing, she was blind in the left eye, then she proceeded to tell us the news; that this syndrome can involve having the same thing in the brain and that the problem with these AVM's ( I never thought I could remember what those 3 letters stood for) is that they hemorrhage. I was then in a whole other state of shock, I thought I had dealt with enough for that afternoon, but obviously not. I left there in a stupor, emotionally drained and not knowing what to say to my daughter or her older brothers that stood there asking, "why are you crying mom?" as I held back the tears.

I made it home in the rush hour traffic after talking to my husband from the doctors office. He was on his way home and just as confused and shocked as I was. The doctor told me as I left her office, "Don't let this ruin your Easter weekend, I will schedule an MRI as soon as possible." Well Easter was very quiet that year. Everyone was a little somber.

Monday morning I got a phone call to have her scheduled for her MRI. It was done under sedation so she was out and very groggy as we left the MRI facility. We got the results within a couple of days. Our family doctor called us in and we were hoping and praying that there was nothing in the brain. He told us what we didn't want to hear. It was a very large AVM, about 4 cm in the thalamus, it followed the optic nerve to the eye and he didn't think it was operable. He made an appointment with a neurologist to explain the MRI scans with us.

The neurologist was nice. He examined our daughter and many things he pointed out made sense. She had some things all along that we never realized were different until he pointed them out. We always thought our daughter was ambidextrous, she would switch her fork from her right hand to her left hand from a very young age and did the same with her pencil as she was learning to write. I also realized she was having such a hard time remembering letters and how to make them from week to week due to the AVM and a lot of things started making sense. The one thing that didn't was that he told us it was inoperable.

Inoperable was not what we wanted to hear, of course we had no idea what the thalamus and hypothalamus of the brain were or what they controlled or anything. We were so upset at that news and it was all going so fast. One day we had a little girl who finally had long enough hair to pull into a ponytail and the next she has a thing in her brain that I never heard of and didn't understand at all!

We asked him for a neurosurgeon's name, we wanted to know from a neurosurgeon whether or not this was inoperable. I don't think he liked that very much, at that point what did we care what he liked!

We did take our daughter to see a neurosurgeon about 60 miles from here. By the time we got to that appointment, I had started to calm down a little and ended up finding information about a "gamma knife". I was told abruptly, "That isn't an option" after bringing it up. Before I could ask why, he was out of the room. I was confused and felt menial as he left the room. I didn't feel I was given real reasons as to why not. I left there sad, angry and depressed all at the same time. It was my faith in God that kept me going. I decided that I had to deal with this the way God wanted me to and so I began to pray to God more about how to deal with this... I needed God more than ever and so did my daughter. The AVM in her nose was removed the following October and was successful. She asked questions over time and little by little she learned the truth. It was so hard at times to have to tell your child that there isn't anything any doctor can do. But I felt somewhere there was a doctor who would be able to help her. I know God performs miracles all the time, and I sensed his miracle would be through a doctor.

We wrote to a doctor in New York that I had heard of on one of those hour long news programs that was doing surgery on the brain stem for kids suffering from cancer that were otherwise told there was nothing to be done. We got a letter back saying this wasn't the time to do anything but there may be options in the future such as embolization or radiosurgery and we would have to wait till she started having "symptoms". After a year passed we saw our daughter struggling even more. She began dragging her foot and one doctor started her on physical therapy.

Through her therapist I met other moms dealing with a child who has a disability and through talking with other parents, I realized my daughter wasn't getting the tests she should have with her new symptoms. Finally I insisted that another MRI be done. It revealed the AVM was now 6 cm x 5cm x 4 cm.

I had been searching all along for someone to help us and by the time we had this scan I had a doctor to call, a neurosurgeon in Virginia who was considered to be the "guru" in the gamma knife field, according to one of the doctors in Seattle. He eventually wanted an angiogram done to decide whether he would treat her. After the angiogram was done he said "NO". We were so upset, we begged him practically to please reconsider. He then mentioned he might consider a staged treatment of the gamma knife using her in a protocol study. Our daughter was only 6 years old and she couldn't remember her friends names, or remember what she was on her way to the kitchen for by the time she got there. She was struggling to use her right hand and it was getting weaker and so was her right leg. He said he would reconsider and later called back, after saying "yes" he called us back once again and told us he was very concerned about going through with it and wanted us to talk to a doctor that he knew of. This doctor he told us was doing amazing things with microsurgery on AVMs in very critical areas of the brain. He said if this other doctor said he couldn't do anything for her he would do the staged gamma knife surgeries.

So we went forward with all the phone calls and arrangements and so forth to do what ever we needed to do for our daughter to get rid of this thing. The doctor in California said he could reduce it and thought it might take 2 or 3 surgeries to do it. He and the doctor in Virginia worked together to help our girl.

It was a year of surgery after surgery. All in all she had five surgeries to reduce the size of her AVM to a size the Gamma knife could be used by the other doctor to get rid of it. The problem was that the doctor was 1200 miles away.

My husband had recently been laid off from his job and was trying to support our family by starting his own business. At this time there wasn't enough money to get her to this doctor and pay for all the expenses involved. With the help of our community, there were fundraisers that paid for the expenses of living away from home for a full year. The airfare, motels, eating out on the road etc. were just about covered by dollars raised by the community and our church. My daughter and myself had basically lived away from the rest of the family for a full year to undergo all these surgeries. It was the longest year of my life.

She had a stoke after one of the surgeries and lost most of her vision after another, each surgery was another ordeal. After the five surgeries she was to go to Virginia to have the Gamma Knife surgery.

When she was on the gamma knife table the neurosurgeon asked me to come in and look at the films. The AVM was still too large for him to treat with one dose, he would have to do one and evaluate as time passed how it phased this growing malformation. In 2 or 3 years he might be able to treat the remainder or she may need further reduction surgeries before proceeding.

Well it is now almost 3 years since she had the Gamma Knife surgery. We are only told there is no significant change from the previous scan each time she has an MRI. Last March she had a small bleed . That is a whole other story, believe me. The doctor from California was really a major part in her recovery and he informed us that he felt we shouldn't do anything further with the gamma knife because she may end up loosing consciousness forever since the hypothalamus controls the consciousness.

We continually struggle with all the challenges our daughter has, from not being able to read at 10 years old to having a hard time finding words she wants to say and seeing her peers one by one, outgrow her due to her being so "different". She isn't your typical 10 year old in some respects but is in others.

She does have a great group of therapists and people at school to help her through her struggles and I am very grateful for them. She is now learning Braille in school and she is using an intellikeys keyboard along with software that speaks and predicts words so she can be as much a part of her class as possible.

She has a wonderful service dog, Sedgy. He is a dog trained to help disabled people and she has had him a year and a half. He does a lot to help her. She is able to walk holding onto the harness of his vest so she doesn't loose her balance and fall as she can while walking. She lost a lot of vision in the right eye due to the surgeries she had and only has one quarter of the vision of the right eye left and no vision in the left. She gets very tired easily and so he helps her use her energy on school work by getting things like her shoes for her and putting her shoes away. He puts her clothes in the hamper and opens the refrigerator for her when she needs to put thing away. She can only use her left hand now and she has become a lefty over time but trying to be independent is very important to a 10 year old girl. I am very proud of my daughter. She is a fighter and is struggling with more than most adults face in a lifetime in her short years.

She is an inspiration to many, and I believe that is the Miracle that God has used her for. No matter what struggles she faces she usually has a super attitude and I think it shows people that we all have sufferings, it is how we deal with it that matters. I am grateful for this site for those who are dealing with this devastating medical problem and hope that all families dealing with this can find a blessing in it. God bless you all.

Update 22 Aug 1999

After 3 years of waiting for the gamma knife to work ; another MRI revealed last September that it wasn't showing once again, "any significant change". Frustrated and disappointed we talked with the neurosurgeon about what he might recommend...in his opinion it wasn't working and there might be a possibility that the proton beam may work. Dr. Steiner has been reviewing her films for the past 3 years every 6 months and said there is a possibility that it may start to close some off after 5 years but he wasn't sure, he said "there is always hope". After seeking advise from her other neurosurgeon, Dr. Yamada, whom did the surgeries before the gamma knife treatment, we were at odds as to wheather to seek any further treatment, since he recommended we "leave it" , he felt it was very risky to go any further.

We trusted Dr. Yamada's advise and really have faith in his wisdom yet we since had an appointment with her neurologist and after discussing the fact that Dr. Yamada retired and would be available for consultations he wasn't available for treatment if something did occur with her AVM. Our neurologist suggested we just get an opinion and see what the Doctors at Harvard think.....

Well once again it was a big let down. Their letter informed us they felt it was too risky and that there was severe chance of serious side effects that they have seen in children with similar AVM's. For the first time Natasha herself was disappointed. It was really the first time she has expressed concern about the fact that they don't seem to be able to get rid of this thing. We have noticed over the past year a real sense of frustration with having so many challenges to live with and are highly concerned for health when she has these emotional days. She is dealing with a tremendous amount of challenges and we understand her frustration. It is so difficult to not have answers for your child. Each time she gets emotionally upset, we feel compelled to stop her from crying and expressing herself because sometimes she gets really out of hand and that is how her bleed last year occured.

At this point w are really praying for a miracle. We always have, of course, but there isn't a moment where you think....what if...you never know if you will make the right decisions but I have learned to trust the instinct God has given me. She is due for another MRI here in September and I am just hoping there is some fantastic news, that something is changing for the better. Thanks to all who have been a tremendous source of support. God bless you all.

Update 11 Oct 1999

After waiting a few weeks and not hearing the results of Natasha's MRI, I finally decided that the films must not have reached Dr. Steiner yet. As it turned out the Hospital here in Seattle still had them. After telling them to send them out, I asked to have a report faxed to me...they can't do that...I'm only the parent...(I never can understand that one) so they faxed the report to her neurologist who in turn sent me a copy.

It isn't good and not at all what we were expecting. It seems the AVM has slightly increased and is now measuring just over 4cm and has midline shift to the right (her AVM was confined to the left thalamus) with mention of effacement of the third ventricle and also mentions slight increase in size of mildly dilated lateral ventricles. I don't know what all of this means but it isn't good that there seems to be an increase.

I don't know if I mentioned earlier in this narrative but her AVM has been a real odd one; it would grow in between each surgery she had so the doctor had to move quickly....basically he cut the recovery time in half that he normally would have for a patient after each surgery due to the growth. It hadn't been growing after the gamma knife treatment until recently so I am only lead to believe there isn't an effect on it from the treatment now that it appears to be increased in size.

I will know more after I hear from Dr. Steiner and we do have an appointment with her neurologist at the end of the month so I am hoping to know what some of these terms mean pertaining to the overall picture. I will update again once I know. Thank you to all of you who are a great support. God bless!

Update 13 Mar 2000

It has been a while since I have updated to let you all know how Natasha is doing. I am so grateful for such a supportive group and thank you all for your supportive letters and the friendships that Natasha has developed with a few children going through this traumatic medical condition.

Natasha has been stable and progressing in her physical therapy and learning braille with great strides. We did have a scare on New Years day. Natasha had been helping me paint the bathrooms when she suddenly informed us that she couldn't see. Immediately calling her neurologist and 911 we were on our way to the hospital. We chose against the advise of the EMT's to take her to Children's Hospital in Seattle rather than the closer hospital in Tacoma, but due to the lack of knowledge on the part of the ER staff in our last experience we were willing to take the risk. She had been sent home from the ER three times in our last emergency, while she was actually experiencing neurological changes resulting from a small bleed. With all the symptoms she presented with it was truly amazing that a doctor could overlook such symptoms.

As it turned out, after going through 2 episodes of visual loss, nausea and headache Natasha was admitted after a CT showed no changes in her AVM to suspect a bleed, and a lumbar puncture to rule out further, since in her prior history, the bleed didn't show on CT scan they were being appropriately cautious about sending us home over 2 hours away. As it turned out, since she did have headache nausea and the visual loss coming and going, she was admitted over night to watch further.

She appeared fine over night and on our way out the door the next day she vomited about 20 feet from the exit...so back on our way up to the room once again. They did then decide to do an MRI to be sure, which showed no changes..the following day being discharged in a matter of minutes, her vision once again was gone and this time she became very upset, more this time than the prior episodes and talking of not wanting to live with this condition any longer. A very scary thought to hear from your 11 year old child.

After checking out all the symptoms again. Once her vision returned we were discharged and feeling confident that she had not had any bleed we headed home with the intention of seeing her ophthalmologist the very next day.

After ending the exam room the following day, she once again said her vision was gone and then became violently ill. She vomited at least 4 times in the exam room and the doctor was highly concerned due to her significant medical history. She couldn't see any changes in her eye exam and recommended us to a prof. of ophthalmology at the Univ. of Washington, someone who had seen Natasha when she was first diagnosed over 7 years ago. She was concerned that a small bleed so deep in the brain could possibly not show up even on MRI until days later so she also recommended that we call her neurologist right away. We called him as soon as we left the office; she continued to vomit, pretty much non stop for 3 hours, we took his advise and took her back to the ER and he suspected Migraines. I have a history of Migraines so this was logical, especially with the MRI, CT and lumbar puncture clear it seemed to be appropriate to look at this possibility. By the time she reached the exam room in the ER she was once again better. The ER doctor said we would have to bring her back if it occurred again.

As it turned out her neurologist wanted her to start a medication to prevent migraines, due to her history we couldn't assume she was having a migraine and ignore very serious symptoms of a bleed. After 3 days of going back and forth into and out of the hospital he felt we might become complaisant as anyone might after these episodes and he insisted they start her on Verapimil. As it turned out she hasn't had a migraine since and is doing very well.

At this point we are still praying that there is a delayed reaction from the gamma knife since there seems to be no other course of treatment.

In the past 6 months we have discovered Natasha is suffering a depression and she is seeing a PhD. psychologist. Although she at first didn't want to discuss anything with her she is now sharing a whole lot. She has had us all "live in her shoes" by going a 2 hour period with one hand and one eye to see how she experiences life. What an eye opener. Although we can only imagine how difficult life is for her, we never experienced it to this extent. She of course would like us to have to live like that daily!! She understandably gets angry and upset over this complicated medical problem but recently seems to be doing better. We had a long night discussing suffering and her concerns and what her thoughts were regarding God and his role in her life. She seemed much more at peace after praying together and coming to an understanding at 11 years old that God doesn't cause this. She is doing much better now and we continue to ask for healing and guidance from the Lord to help her through these difficult years.

Thanks to all those who continue to pray and support us. God bless. Maureen Pfaff

Update: 23 May 2002

May 12
Natasha is in the hospital. they airlifted her Monday from Tacoma Marybridge Hospital to Harborview hospital in Seattle. she had a brain hemmorage from her AVM and is closly being monitored. She had a very large bleed. but praise God it all went to the ventricles which are enlarged to begin with due to the prior surgeries she had so the blood didn't go into the brain stem. She is having CT scans daily...or so...to determine weather there is any further bleeding. At this point she is handling the bleed well. Her body is not showing any further neuro deficits and she is awake and alert except for the pain; she is being given pain meds, and quite out of it. Please continue to pray for wisdom for the doctors as they wait and watch her. She is under risk of a stroke since that blood has to go somewhere. When it moves it can block something and that seems to be the major concern at this point. Since there is no further bleeding according to the scans she doesn't need a ventricular drain Praise God because that could only complicate things

May 17
She had been doing very well up until yesterday. She woke up with a major headache. They gave her all the meds they could and she still was in pain. Started vomiting and at 6:30 they took her for a new CT scan to compare from the prior scans of the bleed to see if there was new bleeding. Praise God there was no further bleeding but she continued to be in pain and her IV infiltrated so they had to start a new one last night. She has hardly any veins to get one going so we know how difficult that can be for her. Don stayed with her last night and she seemed to be resting he said. I don't know any more than that for now. Please continue to lift her up before the Lord. I ask that you pray she would be pain free and able to rest comfortably. That the doctors would be given wisdom to whether they need to do an MRI to see if there is any further bleeding since CT scans are not as revealing. I am thankful for the treatment so far and the wonderful nursing. We have been blessed. Please pray also for continued strength for Don and I and that we would have some time to get home and take care of a few things...like paying bills etc. Thank you

May 20
She had a very tough weekend. Lots of pain, vomiting and No IV site could be started so they had to put a feeding tube in to get some fluids into her. That was a very unpleasant experience and they have her scheduled to put in a picc line today; a IV directly into a peripheral vein to get IV drugs and fluids into when needed. She did have a much better day yesterday but today the headache seems to be back bad and they of course have her NPO so she can't have any food or drink till the Picc line is in. Hopefully they will get her down there to the radiologist to do that soon. She needs the IV site to get meds for pain and fluids. Please continue to pray. We are thankful for such great care and she was actually awake yesterday and "spunky" - she had a great nurse who gave her a few laughs. Today she doesn't seem too well but without getting fluids and food; that could be some of the problem.

May 22
Well Natasha has had a better couple of days. She had the Picc line put in. Although it was painful, they can now get needed meds into her if she is sick and control the pain and vomiting. She did have the feeding tube taken out after the picc line was inserted with the fluids being able to get in IV they assumed she'd be eating. She hasn't been eating much...a few bites each meal but she was vomiting again yesterday. Please continue to pray; for increased appetit, that the vomiting and headaches stop. We are thankful she was moved to the eight floor last night. She is no longer an ICU patient and we are anticipating Physical Therapist to start working on gaining some muscle strength back today doing some exercises in bed. She is very weak and her balance is not good. She has gotten up a few times to use the bathroom but is very unsteady. She also said she couldn't see well yesterday so we are asking for further prayer that she is not having any new bleeding. Don stayed with her last night so I could get a much needed shower and sleep on a cushy air mattress and I'm heading up there now. Thank you all for all your prayers and support.

Update: 1 Jun 2002

May 24
We are still here at Harborview and are anticipating an end to this soon.. Natasha has had increased vision problems for the last few days and some other symptoms that were of concern to us and the neurosurgeons. She had a lumbar puncture yesterday to measure the pressure which normal should be 10-15...it was 33 so very high. They drained away some of the spinal fluid to bring down the pressure and it was about 17 when they were done. She is having another spinal tap and they will measure the pressure and if it is up again they will drain some again and then put in a shunt tomorrow. They are at all cost trying to avoid the shunt but it looks like it may be necessary. She continues to have severe headaches and that is due to the fluid pressure so we just pray they do this quickly today so she can rest. She is having a lot of pain and lots of pain meds. Thank you for your thoughts and prayers.

May 25
First of all, thank you for all the prayers and encouragement. I want to thank also those that have given us "care pkgs" at the hospital snacks and we so appreciate it and just want to say thank you!

Jesus is who we are focused on; his plan and how he wants to have things done. We know that he is watching over Natasha and providing wisdom to the doctors. They have really been a great team and are doing the "least invasive" treatment for reasons; waiting and watching is sooooo hard but knowing that God is in Control helps us to keep the timing in perspective.

We found out last night that they are now going to wait a couple of days and do another lumbar puncture to see what the pressure is. It was only 20 yesterday - high but for her it may be her baseline before this bleed. She may be able to tolerate that...they will see if it has increased Sunday and go from there. They did remind us that she may be there A WHILE...so we are trusting God for the outcome.

We may have jumped the gun by taking the dogs home - I picked the dogs up from Don's Moms and took them home to get them settled before we brought her home...thinking that they would either do the shunt and have her home after the holiday weekend and we could alternate staying with her and the dogs would have someone at home...but now...with the Word A WHILE emphasized from the doctors we are not sure. We are trusting God is in Control though and we will adjust our plans accordingly!

Bless you and continue to pray; we want her home but don't want to take her home only to have her return, so pray there would be some definite direction for the doctors to go.

May 29
Well the latest on Natasha is that she is doing much better. Yesterday was a real good day for her. She had no vomiting...headaches were under control with minimum meds and the pain control drs. came in to evaluate and decide a treatment. During that time they discovered the patch they put on her for nausea and vomiting had a side effect of blurred vision, so we are praying that now that they discontinued that she would get what vision she normally has back. She is going to have some other medication adjustments to help with the pain of the headaches and a new med. for the nausea without side effects that effect vision.

She actually got out of bed and I took her downstairs to the gift shop..she didn't sleep ALL DAY and this morning looks very good. I am praying we are going home within the next day.

The last lumbar puncture showed her pressure to be at 16! Praise God...no shunt. Thank you for all your prayers and that the team of doctors together have possibly found a way to help her come home so she isn't so sick. Thank you all. We are anticipating going home and Don has been back to work and the dogs are getting settled in at home so we will be ready for her.

Thanks again, will keep you informed

May 30
God is good, all the time!!! He has been faithful to hear our prayers...one after another. Natasha is going home today!! Praise Jesus, she is back to her old spunky self. Doing so well they said she could go home today. I am so grateful for all the prayers and support. The wonderful care packages and encouraging emails from all. She is going to work with the P/T this morning before we leave to make sure she can get up the steps into the house. She walked on the treadmill yesterday for 10 minutes Up from the day before which was 2 minutes..What a drastic change!! She had been ready to pass out just the day before that with just going to the rest room so major improvements. Her vision is still the same but we are very encouraged that it may be a side effect of the medications and if not...from the bleed it will come back with time. We are looking forward to going home; resting in our own home will definitely aid her recovery. The hospital isn't the best place to rest!! Thanks again and God bless you all!

Update: 14 Oct 2002

Natasha has been in the ICU since Sept. 6th. She had a Massive intraventricular hemorrhage and it also bled into the brain stem. She has been in a coma since then and has had times of lightening up. She has had severe damage and will require a tracheotomy and a G tube once the shunt is placed. She has had a ventricular drain since admission and has had increased pressure when trying to clamp it etc. The shunt is scheduled for today (October 10), last monday it was schedule and then cancelled due to her spiking a fever the night before. We are seeing her respond to us by blinking, wiggling her foot or squeezing slightly with her hand. She is now more aware of the breathing tube and seems to be bothered by it. There was a long period of time that she did not respond at all to any pain stimulus so we are so encouraged to see her responding to the tube and the PT coming in and stretching her foot and leg also indicates she is feeling the stretch and the pain from it.

Please lift her up in prayer ..once again. We have been on a roller coaster ride with this serious bleed and nobody knows what the outcome will be. They had only a 10% survivor chance to begin with..and that was with the notion that she would never be conscious enough to communicate to us. We know she was in pulmonary and cardiac distress when she was brought in and has since been very stable other than neurologically not showing improvement.

We continue to pray that she would open her eyes..and improve in every area, but to see her eyes would be great.

Update: 24 Oct 2002

Natasha had her shunt placed 2 weeks ago now; everything went well. She always bugs me to have her hair shaved off...so that is what I told the neurosurgeons to do...and they did...she is bald again. Although it is now 2 weeks out it is growing.

The other thing that has changed is Natasha is now off the respirator and breathing on her own. They had lowered the settings on the vent so much that they wanted to give her a shot at it before the trach surgery. She did great...the first day they put oxygen on her and she was breathing very shallow...and still is. But she is doing fine on room air for a week and a half now...so we are very encouraged.

The G-tube surgery was scheduled for tomorrow but after having a meeting with the Doctors involved...they are very concerned about her having general anesthesia. Since she has such an insult to her brain they are uncertain if she would be able to be intubate so rather than the button being placed in a surgery the GI team will see her today and talk about placing a peg..which doesn't as far as they know require anesthetics unless she has some difficulties breathing they won't need to intubate her.

She is still very much in a comatose state...she does respond with blinking closed eyes always but fluttering her lids I guess...to answer YES to my questions. If she wants me to read or whatever. She has been moving her arm in response to the nurses changing her position etc. so she is moving more than she was in the ICU.

We are hoping to get her home and in the home environment possibly see more improvement. We continue to pray that she would open her eyes and become more alert. and Praise God that she doesn't need a trach at this time and going home will be that much easier.

Thank you for all your prayers and support.

Update: 7 Nov 2002

We are looking forward to going home today (11/6/02). Natasha has tolerated feeding into the G tube very well. She has been opening her right eye (the one with vision) enough to see out of the 1/4 vision she had. We are assuming she still has it since she wiggles her fingers that she can see us. She has been doing very well. We have had her up out of bed in a wheelchair a couple of times a day. She can only be in the chair they have here for an hour at a time because you can't tip her to relieve pressure. She is awake most of the day..responding by wiggling her fingers or if she is too tired to do that blinking. She has responded tremendously to her roommate. A five year old who is such a blessing. She continually talks to her and asks her to open her eyes; etc.

We are planned to be discharged today. The house is not ready so she will be in the living room for now. We had to build a ramp into the house..that's done and the opening to her bedroom widened..and a shower put in her room - using her closet. It will take a little time. Everything has been delivered to the house as far as equipment..the nursing care is approved by the ins. but the agency doesn't have someone avail. at the moment. We are taking her home anyway; managing till they find someone. I will just have to do the majority of the work while Don is home and do my best while he is gone.

Thanks for all your prayers and support. Please pray the plan to get out of here doesn't have any snags!

Update: 20 Nov 2002

We are home! Got home Wed. 11/8? It has been a bit of an exhausting few days but we are working into a routine. A CNA has been here after 2 days and has been very helpful. Natasha I believe is glad to be home. The dogs are just so happy she is here and know she isn't the same but love her anyway. The ramp Marvin and Keith built with Don is beautiful; I had no idea how great a job they would do; I'm Impressed!! Marvin was here working on framing for the shower when we got home; Marvin what can I say, you are Super! Iva also. For lending her husband out for so long on all this work and for bringing dinner over Wed. eve. We really haven't been able to think or plan eating at this point; we are just so overwhelmed with "things to do".

I need to go through all her things. Pack up and give away what I can and then alter all her clothes to work for her. The CNA had a great suggestion, to cut up the back of all her tops and sew the edges so that she can have them put on from the front and we don't have to exhaust her and us by putting tops over her head. So I have my work cut out for me. I also have to go through all the stuff Don hauled out of the attic so that insulation could be blown in above the room we had just finished when she had went into the hospital; we will simplify things...hopefully...I plan on a huge burn pile! For now things are a mess

Please continue to pray. We are hoping that being home will help her improve. Don and I have a lot of adjusting to do and working together to take care of her and the home.

The CNA and I took her out yesterday. I think she enjoyed getting out; I thought I would venture out for the first time to go to the mall and return clothes I had purchased for school; she never got to wear them and they can't be put on her so I had to return them - On the way we stopped at the pharmacy....they loaned us a wheelchair till hers was in; one that was just not working; she was leaning her head to the left so far it was on her shoulder and she needed a head rest that would stop her from doing that. So we stopped on our way and her chair was actually in; so they asked if we had time to have it fit for her..so we did that - took 2 hours then went to the mall to return stuff. She was wiped out when we got home, but I think she liked getting out.

The overhead lift in the house is installed and works great! I am so glad we decided on this one...I couldn't handle the hoyer to move her in and out of the wheelchair, it was killing my shoulders, hips and back. I only used it two days and that was enough so we are so glad to have this to get her moved.

November 11, 2002
Well it has been almost 2 weeks since we arrived home...things are going well. We are adjusting and doing well with her care and the help we have. The van is great. Tasha has gotten out a few times now and she enjoys that.

She has been pushing buttons on a toy that will help us know if she is answering us "yes". She has been up in her chair the last couple of days for a number of hours...really doing well with that...6-7 hours. She loves company so has been glad to have visitors.

Thank you for all the wonderful meals. Shalene and Chuck brought over a wonderful Lasagne dinner complete with Apple crisp dessert; Skip (Mike Rolph) brought over his FAMOUS Cajun Chicken Fettucine - he had people trying to get into his house for it!! Chris Fletcher made us a wonderful chicken and rice casserole and we thoroughly enjoyed all!!! What a blessing, we are so thankful.

Pam McGee came out and picked up all Natasha's tops and did a super job sewing the backs up so we could get her tops on from the front and she even matched the thread to the fabric..(you should see what I did in haste) great job and such a tremendous blessing - Thank you Pam.

I've been able to get through the attic stuff...burned a lot!! and the Christmas stuff is almost all up! So the remaining went back in the attic this weekend. We can actually move around in here more.

We are hoping to be back at church soon...this weekend possibly; it takes a little more time to get out the door these days but Tasha would like to get there...at least for a short time.

Thank you all for your continued support and prayers.

Update: 17 Dec 2002

Well it is over a month since Natasha has gotten home. We are adjusting to our New life. She is doing well. Occassionally makes sounds attempting to talk it seems and we are encouraged by that. She has days where she will move quite a bit and then days where she seems very unresponsive. She blinks for us to answer "yes" and she will wiggle her fingers to answer. She actually has been helping me quilt. Pushing the pressor foot just enough to get it moving on my machine; I rest her arm on the pressor foot and she is able to push it enough. This is very exciting since quilting with me and a group of ladies to make baby quilts for missions to take all over was something she had been doing.

We have great help in the home; Trina is her Home health aid and she is energetic and young...and has a great attitude. Natasha really responds to her. We are just watching her progress day by day...it seems very little but we know that it all takes time.

Thanks for all the responses we have had and I'm sorry I can't reply to each person; but knowing the support is there is great.

Update: 10 Mar 2003

Since Christmas Natasha had been more alert and staying awake longer hours. We estimate that she was up from like 8am to 7pm and was able to interact with us by moving her fingers to answer yes or blink or move her mouth.

She was been making attempts at talking; we believe, and had been eating various soft foods...like pudding...etc. The oral stimulation is necessary for her to gain back any ability to talk or eat. So we were using the recommended items that her nuerologist suggested...using cold, warm, sour, bitter...things...along with yummy sweet things...the sour stuff really gets a reaction from her.

Recently we realized that Natasha was having absence seizures. They started in January and her neuro started her on Tegretol...then they got longer and more frequent; the dose was increased and then more meds added..(Topomax); they still were very prolonged after giving her Diazapam and calling an aid car they would go 40 min. over giving her the medication so they transported her to the ER 2 times last week. She is now on Dylantin also. Thankfully she hasn't had a seizure in a week now...so hopefully they are under control.

She also began having a problem with her abdomen and it was very distended...things are going better there...now that we have a major regimen to help her. She was so distended I couldn't get her meds in her feeding tube after feeding her small amounts; so we had to stop feeding her for 3 days and only give her water or pedialite...with small amounts of formula to coat her stomach before medications. Very frustrating since she had this issue in the hospital after having the hemorrhage.

She had been using a shower chair up until the time the chair collapsed and we had to send it back...it happened two times and thankfully I had the HHA here to transfer her back to her wheelchair.

We are in the insurance fight of our lives...We are now fighting to keep any help in our home to care for her...we are in the second appeal and it seems that the ins. company is cutting our hours from 56/week of in home help to 0...after March 31st we have no help whatsoever...It is a nightmare to think about...and since all the events of the last two weeks going on with seizures etc. and the fight with the ins. company, I've been ill...I guess Stress does it!

Natasha is now more alert after getting used to the drugs...for about a week she was very out of it...and it was very discouraging...but the last 2 days she has been awake and alert...turning her head to look at her dog or her dad. She has been moving her legs more and her left arm is moving also. She has a touch pad that is attached to a switch that you can record a message on and she can make it play when she touches the pad. One of her friends came by to visit and recorded a message to her...she played it all night and day. She and Trina the HHA made a surprise for us for Valentines day..."The love quilt" Trina had her press the pressor foot on the sewing machine to sew together a small quilt of valentines...it is precious and after finding out how Trina cut the fabric...it must have been making Tasha crazy...she rolled up the fabric and tried to cut through layers upon layers...when I asked Tasha "were you just going crazy ---thinking --- THAT IS NOT THE WAY YOU DO IT???!!!" she moved her whole hand to respond "YES" I think she loves Trina and the antics that go on everyday with her here...she is Natasha's kinda Gal!.

Please pray that the insurance company would continue to help us in regards to home help...I know they are going out of the contract...but they do it all the time...Natasha really needs this...because I am just not able to do it all myself...with having Rheumatoid Arth. there are days I can barely make it with the help.

Sorry for such a long update...Bless you all!

Update: 12 Apr 2003

We just received word from the insurance company that they are upholding the original decision in the first appeal..Meaning that they will not cover continued home care - no hours at all. We have one more appeal..this goes to an outside source. It should take about 1-2 weeks for an answer, in the meantime they will continue to provide coverage for the help till the decision is known.

Please pray for the reviewers to consider all that there is in Natasha's care; to give us some help. I've had to do all her care a few days here and it is extremely difficult. I am grateful for the hours that we get with DDD; that will help, but it isn't enough. Pray for the state also as they make a decision in increasing her hours based on all her care needs and our situation.

Prayer need also for Don's Job...he has a 60 day warning notice that he will be laid off. There are many looking for job placement within Boeing for him but it is very unclear what is happening with jobs all over the company and nothing is stable. Pray for the peace to trust God with all things.

Also, today we are heading into an early morning appt. that was made yesterday afternoon; Natasha's neurologist called; they found from the MRI 3 weeks ago, some increased fluid in her brain; the ventricles look enlarged and I'm really uncertain of what the report says since he is out of town, but he called the neurosurgeon and wanted her seen right away. The nurse practitioner for the neurosurgeon said there was also an increase in the AVM; please pray that that isn't so. She may have a shunt failure; please pray that that isn't the case; she doesn't have typical symptoms of a failure but it is very difficult to know with inconsistent responsiveness. Pray for Dr. Ellenbogen to have wisdom on what test to do if any and that there not be a need for a repla cement surgery.

Thank you all for your prayers and support. I haven't had a chance to thank personally those who have come and helped in this time of trial, many blessings have been poured out by our church family; wonderful meals, cleaning, visits. We both thank you immensely.

Update: 27 Apr 2003

First of all she did have to have a shunt revision. The did that on April 15th. She did very well; while at the hospital we got word from the ins. co. that we won our last appeal. The outside agency ruled in our favor and the insurance complied providing 8 hrs. a day of care through June and then a review again and a review every three months.

We did notice an improvement in her responsiveness and then she had a very long seizure a few days later and had to be put back on Dilantin. She is more sedated now with the added medications so we hope she will adjust to this and be as responsive as she was the first few days after surgery.

Please continue to pray. God bless.

Update: 10 Jun 2003

Natasha has been doing well since the shunt revision in April. She is now adjusted once again to the increase in Medication for seizures and is alert and awake most of the day with a rest in the evening. She is tracking visually much more and she responds still to questions with her toe wiggle or moving her fingers, but there is less delay in response now. She is using a switch and activates it using a pal pad and has been increasing in her use of that. We have a stander that we can put her in and she enjoyed that for the first week but then she had trouble with ingrown toenails so we have been giving her a break; but intend to get her in today.

We have been getting her in the pool and she is enjoying that. She goes once a week to the YMCA and meets the O/T from the school district there. Trina gets her in and out and changed and all to do this and without her this wouldn't be an option. She loves the water and with the last week of hot weather (unusual for June in Washington State) we got her in our backyard pool. This took quite a bit of back strength for both Trina and I and took 3 days of trials to figure out the safest/best way to get her up onto our upper deck that we could lower her into the pool. She absolutely loved it and looked like a movie star sprawled out on a floating mat with her sunglasses on.

We are anticipating once again the insurance at the end of the month to review our case as to wheather or not we will continue to have home help, and of course we are not that optimistic that we will not have a battle once again; but we are prepared.

Please continue to pray for her to improve more, and thank you all for your support and prayers.

Update: 23 July 2004

It has been so very long I guess since I've updated you all on Natasha. We have had a very long road and continue to pray for Natasha to be healed. Our faith in God has kept us going and that is where the credit is due. Our God is Awesome.

Natasha has continued to have seizures that are classified as EPC (Epileptic Partial Continual) seizures which from what the Dr. has explained is that she has an area in the brain that is completely damaged that the only function it has is to seize. Even if we don't see the actual phyiscal seizure her brain is in constant seizure in this damaged area; but it doesn't cause any further damge to the remaining brain tissue.

We had finally gotten the other type of seizure, Atonic seizures, under control and then this type started. The damage that those seizures caused is really what was significant. A lot of the things she had been doing she can no longer do. I really didn't realize it till I read some of what I had documented she had done prior to the start of the seizures and then it was a reality.

The EPC seizures were so subtle at first and not knowing a lot about seizures we didn't recognize them, just as we didn't recognize the other type she had before. Anyway to make a very long story short, she has had medications and dosages changed almost weekly for the last year. The result of the seizures effect on her or the medication knocking her out, it is difficult to tell what if any progress she has made. She is ONLY on 4 seizure medications at this time and we have once again hit the highest dose she can take and so we are now considering the vagal nerve stimulator.

If anyone has had this implant and can tell me the success or not of it I would appreciate it. We are hesitant to do any surgery as it is very risky for her but because the seizures (although they say don't cause any damage to the remaining brain) they cause her to be completely exhausted and will go on continuously 24 hours a day. That is no life to be almost continuously lethargic and seizing constantly so we need to consider this although very risky.

Our hearts are broken by the devastation that this AVM has caused and her inability to speak is probably the most difficult thing for myself and my husband. Although she is attempting to verbalize it is very difficult and she doesn't do it often enough. Our girl was the most talkative girl you could imagine with the brightest smile and personality, it is so very hard to see her this way, we miss her terribly and although she is here with us and we are grateful for that, the everyday daily task of her care needs is tremendous and we are so busy and wrapped up in that and all her appts etc. that we don't have time to think about our how we feel about this until one day it slams you.

I have to say it is terribly painful to read anyones narratives for the past year I havn't and it isn't that I'm uncaring or uninterested I just don't have the emotional energy left or the time to really read. It is so heartbreaking to hear anyone else suffering from this.

We continue to fight the insurance company for continued help. Right now we are in the process of determining our chances of winning an appeal in the battle to fight for an LPN or an RN since the CNA's that have been her caregivers are not licensed to feed her or give her medications through her tube. We have an attorney looking over the documents and will go from there. In the past appeals (that we have won) the insurance casemanager sent the documents to the outside arbitrator without all my evidence in although she knew I had more to submit, and I found out later that if we had lost the appeal, those evidences would not have been admissable in court so some underhanded things have gone on and so now we are talking with an attorney although we don't have the income to do this. I've not been able to work and so I've started an in home business that of course is going to take time to see any income from but it is the only thing I can do at this point.

I am unable to leave for any length of time since she has a very strict regimen of medications and her tube feedings need to be give at specific time as to not interfere with her medications. One of the reasons we need an LPN here rather than a CNA. Although our request for an LPN or RN caused our latest request for continued care to go through without having to fight through the appeal process we are not able to leave it at that since she should have had an LPN or RN to begin with. Anyway long story, sorry for dragging it out. Please continue to pray, I know God is Awesome and he has a purpose in all things to work for the good of those who love him, so that is where our hope is. Bless you all. And thanks for listening.

Update: 28 May 2006

I have not updated Natasha's narrative for a very long time. It is close to 2 years now and we have been through a ton. Where to begin.

Well looking back at the last update I posted Natasha was going to have the VNS implant. We did elect to have the implant and she had that surgically placed in Sept. of 2004. She did well and slowly the VNS settings were turned up. More on that later.

In Nov. of 2004 we won our battle with the insurance to get a LPN or an RN for her care needs. This was the beginning of our year from Hell really. The first week we had the LPN working Natasha began having diarrhea. It continued and she became dehydrated. We took her to the hospital and she needed IV fluids to begin with. She was very distended and with X-rays it seemed to be air. We were taking her to the doctor and the stool samples didn't result in a diagnosis until finally the week of Christmas she was diagnosed with .Clostridium difficile She had no reason to have this infection, hadn't been on any anti-biotic, so it was confusing. We were told that the C diff was something we all had in our colon and it sometimes got out of control so we began the regimen of Flagyl, ended up doing 3 courses of oral Flagyl, Then it progressed and she began having blood in her stool.

In March she was "Decompressed", using suction to her Gastrostomy Tube and formula switched to something that had less sucrose to avoid feeding the bacteria. We thought this would work along with another round of Flagyl. But after getting home and things getting worse we were back in the ER 10 days later.

This was April 2, 2005 at this point. We brought her back to the ER and after a very long week and this time I wasn't about to take her home again like this. She was admitted and the following morning her Xray was read again by the radiologist and found she had FREE air in her abdomen. Air that was outside her bowel. So the search began for a perforated bowel.

Very VERY long story short, the diagnoses was Pneumatosis intestinalis in the bowel wall that caused micro perforations. She had undergone every type of study and finally after a week they found this. They diagnosed that she had Ogilvie syndrome, an acute colonic pseudo-obstruction. One of the studies was to have barium put in her g-tube to watch it proceed through her colon watching for a perforation. That meant going to the X-ray every hour, the day was about 10 trips to the Xray machine" - ransferring her each and every time from bed to gurney to x-ray table and back again. (she isn't a little girl mind you). Very exhausting for all involved and after 10 trips they decided it wasn't going to keep moving through the intestines at the rate it was going. It pretty much stopped.

With the diagnosis of Ogilvie syndrome we knew it was serious, but once again, we had no idea. It is a clinical disorder with the signs, symptoms, and radiographic appearance of an acute large bowel obstruction with no evidence of an actual colonic obstruction. The colon may become massively dilated; if not decompressed, she was at risk of perforation, which can result in peritonitis and ultimately can cause death. Basically her colon was full of air, and it was like a balloon that had tiny little leaks in it, the balloon didn't pop but was slowly leaking air out. So this is where the FREE air came from.

You wouldn't believe the next month and a half of events, unimaginable at some point, it just rollercoastered out of control. Trusting God through the whole thing, we took one day or should I say one bit of news at a time.

Natasha was put on TPN for the Ogilvie syndrome (obviously you aren't going to feed someone who has a bowel that is about to perforate), then she developed Pancreatitus, and she needed to be on TPN for that also. She had to have a PICC line placed and this is where it all began. Well after a month of sleeping in the room with her, I was to say the least a mean Mom! No sleep is more like it. We ended up buying a motor home to sleep in at the hospital. Parked in the ER parking lot for the next 11 months is basically where we lived.

Okay so now Natasha is in the hospital being watched carefully because of the bowel issue, Surgery team will not touch her. They are not going to unless she does perforate the bowel, too risky, understood. So along with that she has pancreatitus, which the treatment is gut rest so discussing being TPN dependency was brought up. The plan was to watch and wait. After 1½ months of this (numerous studies on her colon), she then gets one line infection after another. She had to have PICC lines replaced 3 times by the time she ended up with Gallstones, 15 gallstones, so Now surgery had to do something with that right? So we and the team discussed why couldn't they at the same time do a looped illeostomy and at least give her a chance with the problem with the colon, I mean they were going to be doing surgery, why not do this at the same time.

We did convince the Surgeon to try, he was going to have another surgeon who specializes in laproscopic surgery come talk to us. The surgeon agreed to do it and she had a colesectomy and looped illiostomy. He removed the gallbladder and brought the small and large colon up through the abdominal wall to an form an ostomy at the illium to bypass the colon and (possibly let it recover). Well a major surgery it was. He couldn't do it lapriscopically because he couldn't find the neck of the gallbladder. It was so scarred or malformed that the draining of it was less that a pin hole when he opened her up and actually squeezed the gallbladder he could only see a tiny pinprick of fluid come out. She had a week on the surgical floor before going back to the medical floor and the team that was taking care of her.

After the gallbladder was removed the thought was that the pancreatitus would resolve since the pancreas usually reacts to the gallbladder. Well after the pancreas started putting out enzymes like crazy again, we were back on TPN after trying to get her tube feedings going. This cycle of pancreatitus and then Pneumonia from being in pain and line infections continued through 3/06 when we finally convinced the surgeon to remove the colon. The theory a few of the Doctors had, and we agreed, was that the colon could be causing the pancreas to become inflamed over and over. The pneumonia's were basically caused by very shallow breathing, when she was in pain and splinting, her lungs would fill with junk. She ended up in the ICU 3 times because of it. The fact that she breathes shallow without being in pain makes it very critical to control her pain. She has had MRSA in her lungs, pseudomonas in her lungs and blood among other things, all these things keeping her basically in the hospital for a full year. We just got home (praying that we are home for good) April 3rd 2006 - she was admitted in 3/05 when this all began. No body thought she would do so good after the surgery, she was out of the ICU in 3 days. She hasn't had acute pancreatitus since and we are praying that we can keep it that way.

Since Natasha has had reoccurring pancreatitus, she now has chronic pancreatitus. If we can control her pain at home, and avoid acute pancreatitus we will be blessed. She is always at risk of pneumonia and it develops very quickly. She has a coughalator to help airate her lungs and pop open the vile in her lungs to prevent future pneumonia's. She has had needs for oxygen so frequently we have a concentrator to supply her with O2 needs.

At times it is like running an ICU in our home but we wouldn't have it any other way. We will do what we can, as long as we can keep her home. She is better off at home no matter how you look at it. The risk of infection in the hospital is so great. The care she needs is great and with having to be with her in the hospital continuously, it is mentally and emotionally exhausting. She needs us to be her voice since she can't speak. It takes forever for not only the nurses, but doctors to understand that she does understand everything going on around her but that she just can't speak. She needs to be told who they are and what they are doing and give her dignity.

Through it all, she has made some very drastic improvements. For one she is off most of her seizure meds so she is much more alert. She is only on one medication, Keppra for seizures, which is amazing considering she was on Topamax, Dilantin, and Triliptal along with the Keppra and she was still seizing most of the day. The VNS was turned up slowly during her hospital stay to the point that her seizures are controlled with the Keppra alone. Since being removed from the meds she is so alert and has also began talking. Although it isn't everyday she does say things out of the blue. Everything she says is appropriate and very clear, not slurred or anything, just very quiet. Everything from "I love you" to "What movie?" and "Yeah, right!" She is inside the same girl she always was and it is so great to see!

She is also able to move more. She is doing things she hasn't been able to do since having the hemorrhage and we are amazed daily. She actually is grabbing things. Helping dress by pushing her legs in pant legs, arms in sleeves etc. She is nodding yes and no for answers most of the time and using her switch to turn things on to take part in daily activities such as cooking, sewing etc. She has been able to swallow so much better than in the past and enjoys tastes of soft food, especially ice cream! We are praying she continues to improve and enjoy each and every day with her.

We have learned that the nurses we get in our home sometimes don't have a clue what infection risk people like Natasha have. Things need to be clean and everything that touches her needs to be as clean as possible. People don't think anything of dropping a blanket on the floor and putting it back on her, but that doesn't fly in our home. We have a dog, dogs are dirty, he goes in her room with dirty feet etc..sometimes people don't think but you would be amazed that there are nurses, trained in patient care that don't get it. We are still waiting for the agency to find us a nurse. We have very good C.N.A working for us and doing amazing, she can't give meds or feedings so I have to be here but otherwise is a great help and so good with Natasha as far as communication and understanding her form of communication.

We only hope that the past year is behind us. Onward we continue!!

Update: 11 July 2008

Natasha, Our beautiful daughter passed away on Feb. 9, 2008. She had gone through so much since my last update; fighting like a champion as always. She had numerous bouts of MRSA pneumonia, was on bi-pap at one point 18 hrs a day and looking at getting treached; had many PICC lines to treat her for MRSA and other various infections in her lungs. We worked diligently to keep her from having to be treached. One thing after another, it was like running an ICU in our home. She was septic, then seizures began again; different than any other she has had and lasted for 2 hours; she was put back on a huge dose of keppra; her Heart rate began to drop into the 40's then even lower at one point into the 30's. Her face suddenly began to look puffy in front of her ears....after looking to see if she had infected perodid glands we found she had a huge blood clot in the Superior Veina Cava; SVC syndrome. It was huge; the only thing they could do..to prevent it from growing more was to put her on a treatment of blood thinners...we all know that isn't what someone with an AVM should be on but there was no choice; She came home for 12 hours before I brought her back; she had increased pain and wasn't able to communicate the location. At 10pm we arrived at the ER and after getting to a room at 5am She and I went to sleep. She never woke again. She had a massive hemorrhage and passed away the next morning. We miss her terribly; some days are unbearable but we thankfully have faith in God and know she is no longer suffering the way she did; she is free; able to dance, sing and do all the things she couldn't do the last 5 years here on earth. It is only us that suffer now; until we see her again. God bless you all; please keep us in your prayers.

Discussion, comments, or questions: Maureen Pfaff

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