It was March 28th, 2007, Hush and I were sititng in her room talking and layla was sitting in the living room watching tv sitting by Baybeblue who was passed out in her carseat. Suddenly Layla yelled for me and said that Baybe was doing something weird. I came out and she had a look on her face like she was scared and she was shaking. I picked her up and instantly knew that she wasnt ok. I had never seen this happen to a child before. She was turning blue and I yelled for Hush to call 911. The ambulance showed up to take us to Milwaukie Prov hosp. We got there and settled in a room and waited. Nothing happened. She just layed there and I felt like they thought I was being over dramatic and maybe it was something else but she was fine now so they sent us home. Later that night we were at home and BOOM she did it again. We called 911 and went to Legacy Emanuel hospital where they specialize in children. Again we waited and nothing else. We waited three days while they put her on phenobarbitol and they sent us home again. We were home 4 days and then it happened again so on the 5th of April we went back to Legacy. This time they decided to put her on some medicine for seizures. They did an EEG but the results showed no signs of seizure activity and was otherwise completely normal. I wrote down every twitch and strange movement still there was no proof of seizures. They did another EEg and decided ot leave it on for 24 hours. The neuro came into talk to me about all the different things kids do that can look like seizures. When he left the room she went into a seizure and I ran to get him. Finaly he saw her having a seizure and saw it on the EEG at the same time. I was so releived now I could take a deep breath and relaxe a little. He said that it was a seizure phenomonom. She was for sure having seizures but her EEG was totally normal in between. After this they started trying one medication after another and with each one her seizures seemed to change a little but never stopped. by the time we were in the hospital for 3 weeks she had started having 8-10 grand mal seizures a day and was on 6 different meds at once. She was still eating great though sometimes more than 8 oz at a time. She was a little chunk ball. Also while we were at the hospital we were presented with the idea of the ketogenic diet. The lady that came to talk with us about it made us very uncomfortable. She was high strung and over caffinated and we felt like she was trying to sell us on a product. This diet was very risky on a child so young she was only 3 months old. The risks we would have to take with her and food would be enormous. If she started crawling and she found a cookie and ate she wold have a severe seizure. The other thing is that the diet is so rare that no one would be able to care for her in a n emergency but these diet people and if they were busy then we were screwed. We couldnt take away her love in life which at this time was her bottle. The diet would be a nasty tasting diet that was very difficult to get kids to eat and like. We partially agreed to think about the diet but were put off at the get go. One day we were there they told me that we were going to have a meeting about her diagnosis. They told me that it was hard to tell this young but for the most part, children who start having seizures this young and they cannot be stopped immediately with meds there is usually a POOR PROGNOSIS!!! I cried so hard. They told me that I needed ot be prepared for the chance that she may never walk or talk or do alot of things that she should. I heard what they said and I felt the pain but I really felt that she would pull through and this would all be a memory. After the almost four weeks at the hospital they felt like she was stable enough to be at home. We had our meds down in a schedule and knew how to deal with the seizures and just made it a part of our lives. We could hear when she was going to have a seizure because she would gasp a little and her breathing became very loud.
When Baybeblue was nine months old I decided that I was going to find the best neurologist I could and get a second opinion about her outcome. I found a DOc at Stanford University that specialized in kids like her. She was now totally drugged and rarely even opened her eyes. We traveled to California to have Baybe seen. The diagnosis given to her by this DOc was that she was almost completely unresponsive and made zero eye contact. She was overweight and would prbably never do much of anything. We asked about whether they thought we should do the Ketogenic diet and they said that they would accept her for the program but they didnt reccomend it and that we should just start worrying about her quality of life from now on.They also said that they would not do it on a child under one year old and they never had. Interesting sice Legacy had no problem with it. They wanted us to basically do nothing but love her. I was devastated by this and went back to our hotel to cry for hours. I was angry and didnt want to talk to anyone about the news. I stayed upset for a few weeks after we got back and then switched into a different mode. I decided that if she had a poor outcome then we might as well get her off the meds and let her live life and maybe become a little more alert atleast. We took her off the Keppra first and saw alot of improvement in her. She started moving around and trying to look at stuff. We had her eyes tested at Casey eye institute at OHSU and we got them to do an erg. That is a test where they put contact lenses on her eyes that are connected to a computer that actually reads what she is seeing. They said ehr eye balls are perfect and she actually has perfect vision. It is just the connection to the eyes. They also suggested that the meds might be causing more damge. When we started taking her off the Phenobarbitol she got better and better each day her seizures reduced. By the time she was off the pheno the seizures were almost gone. We attempted to start taking away the klonopin but she started haveing these painfull jerks so we put her back on it. and that is where she stayed on just Topamax and klonopin. Her seizures were now reduced to periodic jerks during the day that resembled startles when a baby get scared or hears a loud noise. We didnt mind these startles at all and the neuro told us repeatadley that he did not think they were seizures but just a normal responce like newborns have and she was having hers late. I knew that they were seizures because she was my child but it was pointless to argue and they were a great relief from what we had dealt with before. Baybe was doing great having physical, speech, and vision therapy coming to the house and additional therapy at legacy hopital.
We eventually discontinued that therapy at the hospital because they were pushing her too hard and making her cry everytime. Baybeblue began walking around in her walker and was using her hands alot and making great strides in her eye contact. We finally were making good connections with her and really felt like things were going well for Baybe.
We had our goal set at getting her to sit up by the age of 2. And you know what? Every second until she turned two I really thought she would sit up and prove us all wrong. I felt in my heart not to worry too much. I was very wrong. I feel like she was no closer to sitting at the age of two than she was at the age of one. We had been told all along that kids that sit by the age of two will walk someday and kids that dont just will never walk. That is just the rule of thumb with disabled children. Im sure there are exceptions and hopefully she is on eof them.
now our story begins the last day of february, 2009. for the last year things have been going well for Baybe, she hasnt had a big seizure in a long time and she now just has little jerks during the day that last only a second and goes right back to what she was doing. Then around the beginning of Feb she started having a new little seizure that looked like her eyes were fluttering. It was significant enough to let the neuro know what was happening. Over the next few weeks I called neuro everyday to tell them it was getting a little bit worse and it was for sure a seizure. They told me that they didnt think that it was a seizure that it was probably behavioral. I knew it wasnt so everyday I was video taping as it got worse and worse. Finally they agreed to let us get a new EEG and see what was happening. They didnt know when we would be able to get in so I called the EEG department myself and told them I needed to get in and they worked her in the schedule that day. We had to go to Providence st vincent which we had never been to . They did the EEG for 30 min which is the normal amount of time. They tested her with flashing lights and everything and they saw nothing. I asked if they could please go 15 min longer so they called and got permission from Doc and continued. She then had a serious of jolts and an eye flutter so I was please I made them go longer. I felt satisfied and headed home thinking that they would call me and probably make a med change. As soon as we got home the phone rang and it was the neuro Doc Pohowalla himself. He said that they found infantile spasms on the EEG and I needed to take her to legacy Hospital to be admitted right away. I packed up kids and we headed to hosp. We got checked in and admitted, settled in and waited to see what the plan was gona be. THey daid they needed to medicate her to control the spasms immediately due to the fact that the sooner that you can stop the infantile spasms the better the outcome. They told me they were gona give her ativan and phenobarbitol. I had bad feelings about the pheno due to the situation that we had before with it but I trusted them considering they knew her past as well. The first thing they did was to give her her regular scheduled meds that she always take, Topamx and klonopin. I asked the nurse to see the meds and they were actually about to give her too much. It was fixed and I didnt think too much of it. After that they started her IV and gave her ativan through it, she passed out immediately and was totally limp. I put her to bed in her little hospital crib and they hooked her up to an IV pump with Phenobarbitol loading dose that was going in slow over a period of time.(Picture below is of phenobarbitol while it was going into her, I wish I could just reach in the picture and stop it.
) I made my bed and went to sleep. About an hour later I woke up and looked at Baybe and she was hyperventalating and burning hot. I called for the nurses and they rushed in. Her oxygen dropped really low and they had to call the respitory team to come and suck out her airway and help her start breathing. She had a raging fever and needing to be put on oxygen to help her breath she was breathing so hard and fast it was really scary. I was in shock, I didnt understand what was happening and the Doctors werent saying anything. I started questioning how much meds they gave her and asking to see her chart so that I could see for myself. I was told that they did have the authority to show me the file and didnt know what to tell me. They said they didnt think that was the problem and that they were diagnosing her with pnamonia and giving a large dose of antibiotics to help her.
I knew this wasnt right because she was healthy when I got there. The only thing that was wrong with her was her eyes fluttering now she cant breath on her own and is unconcious with a raging fever. I was pretty much freaking out and felt like I was in a movie or something. I had my best friend Hush come and sit with me and she and I both began taking notes of everything the Docs said to us. We argued all night about whether or not she developed pnomonia in an hour of being here or whether they could have possibly made a mistake. I had just taken to the regular pediatrician the day before and she was totally healthy.The next morning Baybe didnt wake up, she always wakes up around 8 am or so. I knew something was wrong, she looked different, her eyes were swollen and she was so limp that her jaw was collapsed back. We tried everything to arouse or wake her up and nothing worked. At one point I asked if she was not waking up shouldnt they be giving her some sort of fluids in her Iv and 4 hours later they finally gave her some Iv fluids. How long would they have waited if I didnt say anything? All day went by and still nothing. Her breathing was terrible and my daughter as I knew her was gone. That evening I slept in the crib with Baybeblue becaue I didnt want to be far away from her at all. At some point during the night I woke up to her shaking. She was shivering severely like she was freezing but she was hot to the touch. She wasnt breathing well. I ran for the Docs and they came in with puzzled looks on there faces. They started going over all the things that were going wrong. Fever, fluid in lungs, withholding urine, constipated, then started yelling out a bunch more tests they wanted done. They decided that they needed to get urine so they tried giving her a catheter. The male nurse setup all the stuff and prceeded to try and shove the catheter into her clitorus. I watched and was gradually getting more and more stressed about what he was doing, He wasnt gona get it in so I got in there and tried helping with no avail she started pooping. We stopped and helped her poop.It was the craziest thing I have ever seen, It was so big that it was like helping her give birth and the inside of her turned out it was terrible. The Doc immediately yelled out for someone to get her some miralax. They spent the next few hours doing the tests and trying ot get her to pea for the urine test. They gave her boluses of water and did the picture of bladder several times and saw it was full but couldnt get it to come out. Over the next day I kept asking the male nurse where the miralax was and he finaly said that he ordered some other thing to help her and I said that the DOctor specifically said miralax. He said he would take care of it. A few hours later the new nurse came on duty and I got angry I demanded to know why she hadnt been given any miralax yet and she said she would check. When she came back she said that there was never an order put in for anything. She finaly got the order put in and gave her the meds. Again her father and I both demanded to see her chart so that we could see for ourselves and we were just ignored. Since we were on the weekend it seemed like the Docs didnt really know much of how to deal with the issues that were arising without there social workers team. Monday morning Baybe finally opened her eyes
it been since friday night and I was so happy. The night before, her uncle Rajiv had brought holy water and blessed her and when they left I put it all over her. She was opening her eyes but she was far from ok. She was still completely limp and looked very drugged even though we hadnt given her any meds since friday. I was scared and confused and didnt understand what was happening to her. Finally a social worker came in the room and told me that she didnt know why no one would show me my chart since it was my right, and that they were setting it up so that I could view it. I had my sister Melissa, her dad steve and his step dad Bob as witnesses. I looked through the file trying to find only one thing and that was the phenobarb dose. I finally found it and what I saw gave me chills. The dose of phenobarb was handwritten in the chart and one of the numbers of the dosage was scribbled out. There was no initials and no explanation written as to why the number was scribbled out. When I pointed it out they said they would be looking into it. Later that day they came back and said that the girl that wrote this in the chart had to leave and fly out of town for a family emergency and could not be reached for an explanation. At this point we were very angry and continually unhappy with the way Baybeblue was being cared for. At one point a male nurse that was changing her Iv bag spilled water all over Baybeblues face. Suddenly a DOc came in to check on Baybe and she had been taking a nap for about an hour so we thought. THe nurse could not arouse her so we started trippin again. We tried everything to wake her up and she was completely unresponsive. This lasted for about twenty more min and when doc went to get help she suddenly opened her eyes wide and gasped for breath and was awake. All that they could tell me was that they didnt know whether or not she would ever be alert again or whether she would loose all her skills and be as she was now. We were told that the medicine Vagabutrin from canada was not approved in the U.S. and so my insurance would not pay for it and this was our only option for now so I would have to come up with the funds myself. There was one other option and that was an experimental med only approved in the U.S. January of 2009 and that was Rufinimade and they only had it at OHSU. I wanted to tell the neuro at that point how I felt about everything but I really felt intimidated talking to him so I jumped on the chance to get away form Legacy and moved our care to OHSU doernbecher. Before we left Legacy that next morning we decided to go ahead with the swallow study that we had scheduled already. Before this happened Baybeblue has always held her own bottle and drank it, and even ate baby food off a spoon. The results of the swallow study was devastating, they said she is asperating everything and would need a feeding tube through her nose immediatly. I was told that she could have nothing by mouth from now on and that if we did it could kill her. I almost fainted when I found out. This had been the best thing she had going good for her was her eating skills, now that ws gone. The nurse at Legacy before discharging us to OHSU placed her feeding tube and then gave me a giant syringe and asked me how much I wanted to feed her! I said that she normally drinks 8 oz but I thought that might shock her so I opted to giv her just 4 oz and she did it gravity way and put 4 oz right in. She began fussing and crying and moaning like something was hurting her but they kept saying it was normal cause of the tube.
We rode in an ambulance to Ohsu at she whined and cried the whole way there. WHen we got there I was confronted by a very uptight nurse Baybes oxygen dropped below 90 and stayed at 88 we waited a few minutes then went to get the nurse. She came and said that they werent worried and that told me she couldnt have any oxygen and if it was gona be a problem or cause me anxiety that she would turn off the pulse ox machine. I almost slapped her in the face when steve jumped in and she argued with him until another nurse came and told her to leave. Baybe had been on oxygen at the other hospital and had stopped breathing several times in the last few days so what the hell? I asked her how much it was taking out of her pocket to give my daughter a little oxygen. I was not happy but the new nurse gave her oxygen and let us be. Finally after 5 hours of crying they decided to check the placement of the tube. It was pushed down too far past the stomach by 13 cm. When they pulled it out she calmed down and was fine. When they decided to feed her they told me that the amount that they gave her of 4 oz was way too much and put in way too fast for her first feeding especially since she had been in a coma for three days. Meanwhile they were now holding food from her so she was starving.
I was scared when I first got to OHSU. I felt like I didnt want to trust anyone else with my child and I had no choice. I didnt know if there was somekind of cover up going on with the ned mistake but no one seemed to want to discuss the topic with me and started treating as if she just showed up here and they had no prior info. They had a social worker come and see us right away because apparently there was info passed about us not being happy with our care but nothing else from legacy.(weird)if a hospital transfers you in an ambulance to another hospital wouldnt they send your records too? apparently not. Does that sound safe?
The next day we realized that there was a huge rash under the tube so the nurse moved it and taped it again. It did it again before I realized that it was probably the stomach acid off the tube when we pulled it out the nurse didnt clean it off so we moved the tube and put meds on the two severe burns she now had across her face.
Over the next week Baybeblue continued on with the Fever and heavy rapid breathing and trouble keeping her oxygen up. They ended up telling us they were afraid of her getting sick from something else so they wanted to get her started on the rufinimade and then get her home. We didnt want to leave until we knew she was safe and we didnt want tohave to come right back but we agreed.
So we had another EEG and started the new meds. Baybeblue had some crying that no one could figure out why but they ended up sending us home anyway. I had to drive home alone with her and I was so scared. We went to rite aid to get her meds and they didnt carry rufinimade so with Baybe crying I had to figure out a plan. I had to have my friend drive back to the hospital and pick up one pill to last me until I could come pick up new prescription at the hospital the following day. WHat a mess and they didnt have her antibiotic either I was so mad. We got home and she slept great. The next day we drove bcak to hospital and got the meds and drove all the way home. When we were hanging out she started crying. It got louder and louder until she was full blown screaming. I let it go an hour and a half then started calling her Docs. Pohowalla said to Doc ROberts because of the meds he was familiar with rufinimade and ROberts office said that pohowalla was the follow up doc. Her primary doc FOrtlage said he had no clue what to do so I waited another thirty min then called 911. We came back to OHsu and started the process again.
The next three nights she cried and had high high fever, very rapid breathing and for three nights she stayed awake all nite breathing crazy loud and hard and having seizures. Her seizures had continually got worse and worse through all of this and everyday they were stronger and involved different parts of the brain. She was now starting to stiffin up and make an archery stance movement with her arms. Her other seizures that she had before like the little jerk and the aura seizures at night had gone away replaced by these new stronger seizures. When we were readmitted I was sure that the reason she was crying was probably a side effect of the rufinimad so they dicontinued it. For that several days she stopped the crying and started to get better so they wanted to get us home again. We were hesitant this time but she seemed to be doing better. They decided to put her back on the rufinimade and send us home.
Baybeblue right away the next day started doing the crying thing again. I tried everything to get her to stop. I was calling the Doctor everyday telling them how bad it was and they kept telling me that they didnt think it was the meds so keep giving it to her and they would try to get her an appt. I videotaped her screaming it was so bad it would start everyday between 3pm and 5pm and go until she passed out between 7 and 9. I observed her having these small little jerks during this screaming that lead me to research the differentseizure types. I found some that felt like little electric zaps on the back of the head and since she kept grabbing her head during this I figured it was either somehting like this or just a relaly sever head ache. SHe was screaming and thrashing and fightng so you couldnt hold her and nothing calmed her. I tried chnaging meds a little I tried tylenol and advil and miralax and hot packs and ice packs and baths and walking outside and dark room, siblings talking a whole list of two weeks worth of trying everything I could. I started waiting until she started full screaming and then giving her the ativan meds. THey didnt seem to work but they increased the seizures first then about an hour later she would just pass out. All of the sudden her seizures got so bad that she started holding her breath and gagging at the end of them. I was still continually calling the Docs to tell them it wasnt ok what she was going through, she was for sure in pain and the screaming was changing our whole life. I couldnt take her anywhere and when she started cring I couldnt be there for the other two kids. Finally I snapped and told them I was taking her to E.R. at ohsu. We got there and they almost werent gona do anything but we insisted on staying overnight for observation so they made us stay in E.R. THe neurologist decided to take her of the rufinimade and she didnt cry again. They put her on Depokene and vitamin B-6 which it Japan they use along with other meds ot reduce side effects. They decided to send us home again. We went home and for 11 days she seemed ok with the crying but her seizures kept getting worse and worse. He breath holding and gagging at the end got worse and she began spitting up a little when she gagged. I knew this wasnt good but then at night I was sleeping and I woke up to the sound of liquid and she vomited all over me and the bed. This cant happen because she asperates and this could kill her. The next morning I took her back to the ER and we were readmitted to neurology.
APRIL 14 2009
We were readmitted to Doernbecher OHSU and were told that they thought the vomiting was happening because of the nose feeding tube was holding open the sphincter and allowing vomit to come up. They were sure of the fact that she should get the surgery for a G tube going directly into the belly. I had refused this all along because of the risk but now seemed I didnt have much choice. We got a new neuro that wanted to start from the beginning and do all the tests over and try to get to the bottom of things. I was pleased with this decision and a new MRI would be on the list of things to do first then a new video EEG for 24 hours. Her seizures are now very intense with different forms of clenching and screaming at the beginning. They gave her a huge does of Depakene and brought her level up to 143 when 50-100 is theraputic just to see if it stopped them and she seized right through it like it was nothing. After this result the Docs came in and said they think it is time to try the Ketogenic diet. She would have the surgery for the G tube and then start the DIet after. I was told that I would work with the Ketogenic dietician her at the hospital and then if I wasnt pleased with care that I could get a referal and see the best in the country the John Hopkins hospital in Baltimore. So far I dont see that happening.
