July 31, 2005 - Erik's Story

Twin Boys - July 2002 Our family welcomed twin boys into our lives on June 11, 2002. We were very excited since they were healthy and would only need to remain in the hospital a short time before coming home. Both boys, Erik and Nick, developed and grew great from birth. They were both active, talkative, walking and busy boys! First Procedure - August 2003 The oldest twin, Erik, however was larger and his head seemed to be growing at a faster rate than it should. As such, the decision was to conduct a CT scan at 12 months to ensure that all was okay. There were no signs of developmental or other delays or problems so we were not too worried. The CT scan was done on July 31, 03. After the scan, we were told that he had hydrocephalus and an arteriovenous malformation (AVM) resulting from a congenital defect. As you can imagine, we were blown away by this news. The immediate concern was the hydrocephalus which was caused by the position of the 4cm (huge) AVM which interrupted the normal flow of spinal fluid. As such, we went to Duke University Medical Center (DUMC) in Durham NC for treatment and were told that an immediate shunt insertion needed to take place to help with this. This was done on August 8, 2003. All went fine during the procedure. The decision was made to embolize the AVM in hopes to direct blood flow away from this area and create a more normal and functional blood flow pattern. On December 11, 2003, the first of 6-8 procedures took place. During the procedure, there was a complication in which glue separated from the surgical tool. The glue then flowed towards the right side of the brain causing a stroke with a left side of the body deficit. We were devastated. Here we had gone from an active, curious, delightful child to a child that had to relearn everything – speech, sitting up, eating, walking, - EVERYTHING! We dealt with it and by March of 2004, Erik had started walking and talking again. We were once again thankful and excited. Shunt Adjustments - 2004 Around the end of May of 2004, we noticed that Erik was leaning a lot. He also started drooling quite a bit, and he did not seem to be able to stand up and get around like he had done since the stroke. We took him to the doctor for their opinion and on May 28, 2004 the shunt was replaced. On July 7, 2004, we took Erik back to DUMC because he was leaning a lot again and not sleeping well. This time, they put a new shunt in that could be manipulated with a magnet instead of through surgery. We so hoped that this would make it easier to get things settled for Erik. This procedure was followed by non-surgical adjustments on 7/19/04, 8/29/04, and 12/18/04. God is in Control During these times of Emergency Room visits and such, there would be specific moments where we would naturally start to panic. It was during these times when God would reach down from heaven and reassure us. He may just send an overwhelming sense of peace or He my have decided to send someone to lift us up. HE NEVER FAILED to do this for us. We are thankful for Erik because if our family had not been through this journey, we may never have experienced peace that you can actually feel move through your body. It is awesome! The first time this was experienced was when Erik was initially diagnosed. We were in a restaurant with friends when my (Mom) heart started racing and I felt like I couldn't breathe. I told God that something was wrong because a mother was not supposed to have to deal with this. He could not have intended for this to work this way. At that very moment, I asked God to relieve me of this feeling and allow me to take the role of helper during this time. I said that I knew He was the Great Physician and asked Him to just show us where to go and lead our hearts. He has faithfully done this for us. People ask us how we make it through. This is the answer. God is doing the work and we are just watching him work and watching his testimony be created. Sometimes our job is to comfort Erik. Sometimes we share Christ with other families. Sometimes we pray for Erik and other children. One of our prayers before all of this began was for God to place us around different people we could witness to. We also asked Him to teach us how to be better witnesses. God has defiantly answered our prayer! More Problems - October 2004 Starting October, 2004, Erik also began to experience Myclonis or Myoclonic Jerks – what seemed like an exaggerated startle. We went to the neurologist for EEGs and evaluations. They ruled out seizures and said that some kids just do this after brain trauma and not to worry. January, 2005, Erik started having trouble swallowing (eating) and he started drooling a lot. We started a series of tests to see if we could understand what was going on and why Erik seemed to be regressing instead of progressing. Since the stroke, we had Erik in intensive therapy and he appeared to be motivated to want to get up and go but he just could not get his body to cooperate. We went to DUMC and learned that he also has a chiari malformation which puts pressure on the cranial nerves and could be causing the balance and oral tone issues. MRI’s were done in February, 2005 to determine of it was safe to perform a procedure to correct this problem for Erik. The decision was made early April to replace the shunt one more time to be sure this was not the problem before going through with the complex chiari surgery. The shunt revision was performed on April11, 2005. All went well and after about a week, we started to notice improvements in Erik’s abilities and responsiveness. We were encouraged. Grand Mal Seizure - April 2005 On April 25, 2005, everything changed. We found Erik at 6:55am lying in his bed in a pool of drool about the size of a dinner plate. He was experiencing a Grand Mal Seizure. We called 911 and he was transported to DUMC for treatment. We had been fortunate not to have had to experience "emergencies" with Erik so this all was a new experience for us. When we arrived at DUMC, I stepped out of the ambulance and felt light headed. The driver asked me if I was okay. I said that when I was but I did not know how "okay" I was until I turned around and saw 2 nurses standing at the ER door with arms outstretched. it was like God was telling me, "I've got you." I still get chill bumps and teary eyes when I think of this moment. I was immediately comforted. Their outstretched arms were God's arms. God Sent His Worker To Do His Work While Erik was seizing, the neurologist left around 2pm to discuss Erik with a colleague. Shortly after he left he returned with Dr. William Gallentine - a fellow church member from Good Hope Baptist Church! We had met Dr. Gallentine and his wife at a progressive dinner in December and knew when he arrived that God sent him to help in our case. We immediately felt a sense of peace when Dr. Gallentine arrived. we knew he was a Christian and that he would do all he could to help. At around 5pm, Erik ceased seizing. What a long day for all involved. The physicians at DUMC were awesome. They were very attentive to Erik and us and gave us hugs or words of encouragement throughout the day. By the time Erik awoke from the coma they put him in to stop the seizure, he had experienced so much that he had trauma on the left side of the brain leaving him with a deficit on the right side of the body. He laid in the Intensive Care Unit (ICU) for 10 plus days during which time we were not given much hope. If he did make it, they said he would most likely not be himself at all. During this time, we had the opportunity to meet many great physicians who really were not optimistic. We were told that the part of the brain impacted was the part that controlled his personality, emotions, and really the things that made him who he is. We encouraged the physicians to do all that they could but reiterated that we knew the Great Physician and he was ultimately in control. Comfort from God - May 2005 The first week of May, 2005, Erik started waking up good, recognizing his family, smiling and almost laughing. YES - I said smiling!!! He smiled at his sister and opened his eyes when he was still in a semi-coma state and this we know was a sign from God reminding us that he was still with us. Although he had not regained the skill of speaking since the stroke on 2003, he was making some sounds and such before the seizure and started making some of these again. We were so excited! Early May, he was transported to Greenville, NC for in-patient rehabilitation. This was hard on our family since we already had experienced so much separation but we knew we needed to take advantage of the opportunity to help Erik. Shortly after we were there, Erik started vomiting followed by high fevers. After a week or so of every test available, and I do mean every test available, he started seizing again. This was also the day that a dear friend of ours who had been trough hospitalizations and illness with his child came to visit us in Greenville, NC from Raleigh, NC. This visit was not by chance! God placed him there to get through this ordeal with us. He helped pray us through this and stayed with us until Erik and I left for DUMC. At DUMC Erik's symptoms and behaviors were determined to be seizures. On the way back from Greenville, NC, the ambulance and I (Mom) were separated. It just appeared to vanish in front of my eyes. How could this happen I pleaded! Due to exhaustion and concern I did not even know where I was. I needed to be with the ambulance when we arrived to see Erik and make sure I was there. I started reading signs because although I had traveled this was many times, I had no idea where I was. The ambulance no doubt would beat me there but knowing this, I prayed HARD for it to all work out. As I was on the phone, we approached the 40/540 junction. Just like it had fallen from heaven, the ambulance appeared right in front of me. This did not seem possible since it was going faster than normal and it was on a shorter route. GOD WAS IN CONTROL!!!! At DUMC, Erik's medications were increased and although the seizures ceased, he became less interactive and responsive due to this. No More Options? - June 2005 June 14, 2005, Erik started having seizures and not acting like himself. We ended up taking him to the hospital and learned that he had a brain bleed into his ventricles. We were devastated since we had been told that once this started, things would be difficult for Erik. While in ICU, we were told that doing anything else for Erik was too risky and that there was nothing else that could be done except watch him and make him comfortable when things arose. We were numb. How would we deal with this? How could we prepare the other children? Should we attempt to prepare them at all or just wait to see how things progressed? During this time of shock, we decided to completely rely on our Faith and God and try to enjoy our family. Well, God sent us another direction because our friends started searching for other treatment options. There had been a woman that I had seen at DUMC many times over the years. I was drawn to her but did not know why. Finally, the day after (probably less than 12 hours from when we made the decision to totally as God to lead us), she stepped off of the elevator right in front of us. We started talking and learned that her son Quintez (who is now 12) started experiencing the same regression as Erik around the age of 4. What? We couldn't believe it! We knew there was another case at DUMC similar to Erik but the fact that God placed us together was awesome. Quintez went through the same things - AVM diagnosis, seizures, regression of skills, bleeds, etc. It was amazing how alike their illnesses were. She said she had been told the same thing about Quintez. That there was nothing that could be done for him. Teresa suggested that we send Erik's films to Stanford University Medical Center (SUMC) for review. Why not, we said! We felt like God was guiding us. We prayed hard that he was. On to Stanford, California - August 2005 We have a clinic visit planned for August 25, 2005 and the first of a series of procedures set for August 26, 2005. We plan to remain in CA for 4-6 weeks while we get through the procedures. This again will be SO difficult for our family but we know this feels like the right thing to do for Erik and our family. Wendy August 3, 2005 www.lpch.org/clinicalSpecialtiesServices/COE/BrainBehavior/Neurosurgery/vascularDisorders.html">Info about Stanford Children’s Hospital On July 20th (Margot's birthday) we received a check in the mail from the love offering (that we had heard was set up through our church family). We were touched and pleased and set this aside for later planning to figure out which medical bills to apply it to. Probably 3 hours later, Stanford called and said that they had reviewed the files and were interested in helping Erik out. They said they had not seen a case like Erik's and really thought they could help him. We were blown away. After months of being told there was nothing that could be done and/or that no one would touch his case because he was such a high risk, this was wonderful news. We began looking into making arrangements and verifying our insurance coverage. We felt this was the right thing to do because the first thing we would have said would have been that we couldn't afford to go but God had already shown us 3 hours before that he was going to provide for us. That was Wednesday. Literally the following Friday, a friend called and said he would do whatever he could to help us out and he was able to get really good rates for flights for us. Things were working out. Next, friends from Quintiles called and said they had pulled their miles together and wanted to send the family out for a visit. This was awesome. Another answered prayer because I (Mom) had prayed for there to be a way for them to come out or for God to make the time fly by. He has done both. Insurance Concerns The Thursday before we were leaving the following Wednesday, our insurance carrier called to tell that the medical care at Stanford would not be covered under our plan. Keep in mind that the first thing I did was get authorization for "out of area" coverage. I was floored for about 10 seconds. Then I just literally and completely gave it to God to handle. I said that we were going and that He just needed to make a way for this to be covered. We also received a call that the Ronald McDonald house did not have an opening for us. Then the most amazing thing happened, we did not worry about this all weekend. It did come to mind but just as a passing thought. The following Monday, we were told that it was all covered. It was like God just wanted to make sure we were going to totally rely on Him. We did. We came here with 3 consecutive Friday appointments. After the first appointment, the doctor came out and said the most amazing thing. That was, "we occluded the entire thing." We were blown away. He said Erik was fine (and not gone from us as we had been told this would happen if the mass was completely occluded). Amazing. The next morning, we walked into Erik's room and he was moving all over the place, making sounds, trying to pull his nose tubes out. It was amazing and even the doctor's were blown away. Satan was not through trying though. Sunday Erik started seizing and for about a week his ammonia levels were dangerously high. The Great Physician This ended with a medication change and for a week, all was going well. The doctor then said he wanted to take the mass along with another small area of concern out. We agreed to do this and this was done on 9/8/05. The mass ended up being far larger than expected - 6cm. We thought at most it was 4cm. Erik has been doing so well since then. The doctors are really amazed. We tell them repeatedly that they are the tools and God is the Great Physician. They appear to agree. Every day, Erik seems to be doing better and better. He even complained today when we left. This was hard for us but when you have not heard your child's voice for so long, it was music to our ears. It was also another sign that he is aware of more than we know. The nurse we had today told us that she enjoyed being there today because as the different doctors came in in the morning, they were all amazed at Erik's progress. We were not there yet and the nurse we had did not know Erik. She said they all were impressed with how well he is recovering. Improving Daily Erik continued to improve. We had 10 days "seizure free" and then his incision site began to leak, he started to collect fluid at the incision site, and he started having seizures. This was so frustrating! His medications were increased and surgery to revise the shunt was considered. We ended up leaving it alone because a surgery this close to the other surgery could create other problems. Not a congenitial defect. We planned to meet with genetics to understand more about Erik'sconditionn but were told this was not necessary. We were pleased to learn that the physicians believe Erik's condition was acquired and not congenital. He apparently fits the profile of a child who was developing like any typical child until a year or so of life and then contracted a virus or bacteria that settled in his system and could not work itself out. This is when the AVM or distal fistula formed. This was good news as we were in hopes that this was not something that would be passed to other generations. Leaving Lucille Salter Packard Medical September 25, 2005 we left Lucille Packard and headed to the Ronald McDonald House in Palo Alto for a week of adjustment. All went well and we go home safely. The flight home went well and we attempted to establish a schedule/routine. It was so good to be home and together as a family under our own roof! The enemy is still trying to deter us. All was going well but Erik appeared to be sleeping more and less responsive. This concerned us. We wondered if it was the shunt, jet lag, post surgery recovery, or any of a number of other things that could be going on. The 2 weeks that followed were trying. Erik would wake up sweating, was sleeping more than usual, tired easily, had a day or so with a low grade fever, vomited one day, and just was not himself. We packed our bags for the hospital on Sunday but did not take him to Duke until the following Friday after 2 weeks of "home time". He just was not presenting with consistent or continuing issues. At Duke Medical again It was good to see our friends at Duke - although we would have preferred to have seen them outside of the hospital! We discovered that he had a collection of infection, fluid, and as our neurosurgeon put it, "junk" around the incision site. They cleaned it out and are waiting to see how things settle before looking at the shunt again. The thought is that the shunt is working okay and that his symptoms were the result of a contained infection. We were so glad we took him in. It is so difficult to know when something is wrong because he just does not complain. God always guides us as we ask Him to do. He is so good to us! We headed home a week later in hopes that all would settle. Returning to Duke After a week at home, Erik began sleeping again and started drooling some. We called our physicians and they advised us to come in for evaluation. A CT scan was conducted and his ventricles were enlarged. The decision was made to revise the shunt. After the surgery, Doctor George informed us that the shunt was slow flowing and that the revision was a good decision. We are in hopes that this will get Erik back on track. Our desire is to stay out of the hospital through the winter season when colds, viruses, and the flu are more likely to be present. Hopefully we will be going home October 29, 2005.