On February 1, 2004 Delonie came and woke me up and asked me if she could take some Tylenol. I asked her why she wanted the Tylenol and she told me she had a headache and her eyes hurt her. I asked her if the headache just started and she told me she had it when she woke up. I asked her if she had been having any headaches prior to Sunday. She told me that she had one the Thursday before and that Saturday, but they went away. I told her to get ready; we were going to the ER. I was upset with her for not informing me of when the headaches first started. On the way to the ER, Delonie's symptoms became worse. The headaches were a little stronger and the light was beginning to bother her eyes. She was also becoming nauseated. Over the next few hours, Delonie was turning progressively worse. She was thrashing around in the hospital bed and vomiting, screaming and crying from the pain. I had only seen her this bad twice and that was in the very beginning of her illness and on October 2, 2002. I knew something was terribly wrong and Delonie knew it too. She was really scared. She told me that these were the worst headaches she had ever had since first being diagnosed. The Ct scans showed all the ventricles enlarged. The ER doctor said he wasn't for sure if she needed a pressure increase or a pressure decrease or if she had a true shunt malfunction. I told him I wasn't taking her home until they helped her. I told them the last time I had seen her get that bad, she became unresponsive within a few hours. They decided to admit her and they were going to put her in PICU and monitor her throughout the evening and let her neurosurgeon make the call for surgery the following morning. Well, that didn't fly to well with me. So I had to show an ugly side of myself that I don't like to show. The ER doctor called the neurosurgeon and discussed her symptoms and once he found out who it was in the ER, he told them that she was going to need surgery immediately. Thank goodness her neurosurgeon knows me well enough to know that when I say something is wrong, there usually always is. She had emergency surgery that evening and had the shunt on the left revised due to a shunt malfunction. The surgeon came out and told me that he replaced the shunt and she was doing fine and was being moved into recovery. She was alert and talking by the time she was moved out of recovery and moved to the neuroscience floor. I told the nurses I was going to drive home and pack our clothes and I would be right back. So I left to go home to gather our things. Within about an hour, Delonie's health began deteriorating very rapidly. When I got back to the hospital, the nurse informed me right after I left, that she started throwing up a lot and was combative and belligerent and had became unresponsive. The nurses knew my daughter because they have taken care of her on other occasions. They knew that she wasn't like that and they have never not been able to wake her up after surgery. The only other time that she became unresponsive was back on October 2nd and that was before her surgery. The nurse called the neurosurgeon at home while I was gone and had him come back to the hospital to reevaluate her. He did come back in and he thought it was because of the anesthesia and morphine that she was doing this. The nurse told me that she didn't agree with the surgeon. She told me to go in the room and see if I could get her to respond to me. She said if I could get her to open her eyes, nod her head yes or no or get any response from her, then she would be happy with that. So I went in and I tried to get her to respond to me and she wouldn't. I ran back out and told the nurse that Delonie was unresponsive and I couldn't get her to wake up or respond to me. She was like a limp noodle. I was so afraid. I can't even explain the fear I now had. It was like we were re-living October 2nd again. I had no idea that my daughter and I were fixing to face the worst 11 days of our lives. They called the neurosurgeons back in and they immediately took her back to have another CT scan. The Ct scan showed the ventricles very enlarged. They were huge! She was rushed to the PICU unit. While in the PICU unit, Delonie broke out in a terrible rash all over her body. Unlike any of the other rashes she has previously had. Her throat swelled up and cut off her breathing. She also appeared to be trying to have a seizure and she has never had seizures in the past. Of course, they ran me out of the PICU at that point because I was losing my head watching my daughter go through this. I tried to remain calm, but the fear was overwhelming, not knowing what was happening to my little girl. Delonie was having difficulty breathing and they had to put her on a ventilator. They put in an EVD drain to allow the excess CSF to drain off because her intercranial pressures were really high. They repeated her CT scan a few hours later and the Ct scan showed that a blood clot had formed in her brain. She had intracerebral hemorrhaging along the tract of the left shunt with some blood in the left lateral ventricle. She also had some effacement of the occipital horn of the left lateral ventricle and there was some right intraventricular hemorrhage also. She also showed some evidence of transtentorial herniation. Delonie was in a deep sleep and her intercranial pressures were dangerously high even with the EVD drainage in place. The neurosurgeon had listed her in critical condition. He said she needed to be kept quite and still and they were going to need to give her some strong sedation medication to make sure she stayed a sleep. So they had to put her in a self induced coma. I asked the surgeon how the blood clot formed. He THEN told me that during her surgery, when he went to pull out the malfunctioned shunt, that part of her brain tissue stuck to the tubing when he pulled it out, causing a brain bleed and that is probably how the blood clot formed. Delonie stayed in this comatose state from February 1st through February 5th. They were going to take her off the ventilator on the 4th, but her ICP (intercranial pressure) was still really high. So they didn't exubate her out of fear that it would cause her ICP to increase even more. Her neurosurgeon told me that there was a very strong possibility that she may not know who I was and her speech may be impaired when she came out of the coma. He also told me that she might have problems with her understanding because the blood clot and the scar tissue were in the area of her speech and understanding. I prayed and prayed like I have never prayed before, that God would intervene and stop this nightmare. I have never been so afraid of anything in my life. I just wish that it could have been me lying there and not my little girl. It was like a bad nightmare that I couldn't wake up from. I felt so numb. All I could think about was her smile and would she ever be the same.  They exubated her on February 5th. She started breathing on her own. I can't even begin to tell you how happy I was to see my little girl open her eyes again. When she first woke up her words were" Lots of people, lots of people. I just want to go to the river." She repeated this twice, but she never said anything else about that. I was so happy because she did know who I was!! Later that afternoon, she regressed back to her early childhood and she was talking incoherently. She would say things like "Where is my mommy and I miss my mommy." And I was standing right there in front of her. That really worried me. She also cried out for her mommy when I had to leave the PICU according to the nurses. She would also say things like "Tickle me mommy." She was moved out of the PICU that evening and moved up to the neuroscience floor. The first night on the neuroscience floor was scary. Her moods were like a rollercoaster. She would be happy one minute and wishing she had died the next. Her neurosurgeon assured me that this was not uncommon for anyone who has had a lot of trauma to their brain. I knew it was not uncommon for them to go through a depression spell because of what I have been through with my brother. However, he never regressed back to a child. The neurosurgeon told me that her brain just needed time to catch up. It was hard watching my child go through all that, but by that weekend, she was acting more like a 15 year old again. Delonies left eye was bothering her really bad and she was having double vision again. The opthamologist came into her room and did an evaluation on her. He said that the nerves in her eyes were swollen and inflamed and that interfered with the muscles in her eyes. This caused her eyes not to align up perfectly, which was causing the double vision. They said they normally treat that with steroids and since she was already on steroids, they weren't going to do anything differently other than monitor her vision. He told us that when we left the hospital, she would need to be followed closely to make sure she didn't develop anymore visual problems over the next few weeks. Then on Tuesday, February 10th, Delonie woke up and started complaining with headaches again. They did another CT scan and the ventricles in her brain looked a lot better. They wanted to clamp off her EVD drain to see if both of her shunts would kick in start working again on their own. The neurosurgeons were worried that both of her shunts were not working because of her brain hemorrhaging. After the CT scans came back showing the ventricles looking better, they decided to clamp off her EVD to see if the shunts would work. They also removed her stitches from the surgery she had on Feb 1st. I told the neurosurgeons nurse that Delonie was having pain on the left side where the other shunt was. The neurosurgeons nurse said her CT looked fine and he didn't know why her head was hurting. On February 11, 2004, Delonie woke up and her head was still hurting her. I went and told the nurses again. They told me that she was doing okay and that it was probably pressure headaches. I told them no, it wasn't just pressure headaches. Something was going on and that I know my daughter and I was tired of people acting like they knew my daughter better than I did. About two hours later, she was going back down on me. The headaches became worse and when I started asking her questions, she couldn't respond to me correctly again. They called the surgeons in surgery and the surgeons requested another CT scan to be done immediately. And guess what????? The shunt on the left side had malfunctioned again. So they had to take her back into emergency surgery to replace the shunt. I knew it had to be done, but I was absolutely terrified of them doing another surgery on her. I was so afraid of another blood clot forming and causing her brain to start hemorrhaging again. They didn't remove the shunt that was placed on February 1, 2004. They just put in another one right above it. He was afraid to pull it out because he was afraid she would start bleeding again. She came though the surgery fine without any complications this time. The neurosurgeon said that part of the blood clot while it was dissolving, lodged in the shunt and caused it to malfunction.  Delonie was finally discharged on February 12th. She has Expressive Aphasia and Anomia now. She will be attending speech therapy twice a week until she makes improvements. I took Delonie back to see the opthamologist on Feb 16th for a follow-up on her eyes. The opthamologist said that her eyes look a lot better than they did when he seen her in the hospital. She has lost a little bit of her peripheral vision. However, he expects that to clear back up. Her double vision is even clearing up a little. She only sees double when she is lying down and when she is standing or sitting she only sees one image. So that is getting better. They are going to monitor her once a week over the next month or so to make sure she doesn't have a decrease in her vision. I took her to see the neurologist for a checkup on Feb. 17th for a follow-up visit and to have the stitches removed from the second surgery. She appears to be having some difficulty with doing more than one task at a time. He expects that to work itself out in time. He also told us that he expects her speech to clear up in time. He said it is going to be awhile before she will be able to return to school due to all the trauma to her brain. We now have a certified homebound teacher coming into our home to work with her since she will not be able to return back to school this year. The surgeon said its going to take her atleast 6-8 weeks to get her stamina back. I asked him if they found out what caused her to have such a bad allergic reaction in PICU and he seems to think it was the surgical tape they used. I very strongly disagree with him. He wasn't in there when she broke out with the rash. She has never had an allergic reaction like the one she had in PICU. I am going to continue to push for more answers on that and I want her medical records reviewed. I am just wondering if these past allergic reactions that she has had in the past have now become more severe. I worry about it becoming worse after each surgery. Simply because she was on the steroids before surgery this time and she still had a severe allergic reaction. (Worse than any of the others) And he will never convince me that this allergic reaction was due to tape. He told me what is happening to her shunts are the brain cavities keep collapsing around the shunts. When the cavities of her brain collapse, it suffocates the shunts and causes them to malfunction. It is caused by overdraining. He also explained to me that she could possibly end up needing to have this surgery every 4,6 to 8 weeks. Not exactly what a Mother wants to hear. He mentioned to me that he wants to do a study on the chambers of her brain to see if she would possibly be a candidate for Endoscopic Ventricularostomy (ETV). Which would mean if the surgery was a success, she could possibly live the rest of her life shunt free. Wouldn't that be wonderful!!!!!!! However, not everyone is a candidate for the surgery and sometimes the patients end up having their symptoms return and they end up having to be reshunted. She will be having a MRI done in May so they can do a study to see if she will be a candidate for the surgery. On March 29, 2004, Delonie started having the headaches again and her eyes were bothering her. I took her back to the ER. Although her Ct scans looked great this time, her shunt on the left side had malfunctioned again. While she was in the hospital, I requested the surgeon go ahead and do the MRI to see if Delonie would be a candidate for the ETV surgery. I was really hoping that if she had to endure one more surgery that this would possibly be the last one she would need to have. The surgeon went ahead and did the MRI. Unfortunately, the test results came back and she was not a candidate. That was really heart wrenching, but we are staying optimistic that with all of today's technology they will find an answer for us. They went ahead and did her surgery on March 31, 2004 and she recovered from the surgery fine. While she was in the hospital, the surgeon had a neurologist come and evaluate her to see if these were possible migraines she was having. The neurologist ruled out migraines and said it wasn't migraine related and that it had to have something to do with her shunts. I also found out at this time, that when the surgeon did her surgeries in February, that he didn't put back in programmable shunts like he has always done in the past. He also told me that the programmable shunt on the right was not working, but the one on the left was compensating and he was just going to leave the non-working shunt alone. I was very upset with him for not informing me of this when he did her last surgery. I still thought she had the programmable shunts the whole time. He said he didn't put another programmable one back in because of the blood clots. He said it would have caused the shunt to malfunction much quicker. However, now that the blood clot is smaller, he did put back in a programmable shunt on the left side this time. He also said he wanted to try gradually increasing the pressure in the shunt to the highest setting that would be tolerable for Delonie without her developing more symptoms. He said the reason Delonie continues to keep having so many shunt malfunctions is because the cavities of her brain keep collapsing around the shunt causing it to smother and malfunction. By increasing the pressure it will force the cavities to open up. I sure hope he is right and knows what he is doing! On April 28, 2004 She had to go back to the ER one other time since the last surgery to have the shunt on the left readjusted due to overdraining. Delonie has made a lot of progress since February. She is seeing a Speech Pathologist twice a week at Children's Hospital. She has a certified teacher from the school that comes into our home and works with her on her schoolwork twice a week. She also has a speech therapist from the school that comes twice a week. Delonie has been very determined to get back what she lost and she has come a long way since February. Her memory has all came back, her vision is all better now, and her gait is normal again. She doesn't have anymore problems with her speech other than occasionally she may have trouble with a word, but hey, we all have that at times right? lol She mostly has problems with that when she is anxious or excited. Her determination has been the key to her success. I am sooooooooooo VERY proud of her accomplishments! We will start getting her ready to transition back over into the school the first part of August. On August 6, 2004, Delonie has had several pressure changes since our last update due to continuing headaches and eye pain. Her Codman programmable shunt is now dialed up to 190. The headaches and eye pain have finally stopped. She is no longer seeing a speech therapist twice a week because she has made so much progress and doing great! She has also completed all her makeup work that she missed while being out of school since the end of January. She is finally going to the 11th grade!! Yea!!! On August 15, 2004, Delonie started having some horrible headaches and eye pain again. Tylenol and Motrin weren't helping her at all. She didn't have any other symptoms. I took her back into the ER and the Ct scan showed the ventricles enlarged again. Her surgeon said that the ventricles were enlarged because of the gradual pressure increases we have been doing to try and force the cavities of her brain to open back up and that her shunt seemed to be flowing good. The only thing that stopped her pain was morphine. He admitted her for observation to see if the symptoms would go away on there on. On August 17th, her headaches were getting worse. The surgeon decided that he wanted to do surgery to make sure that all the components of the shunt system were properly attached and working fine. She came through surgery fine. However, the surgeon didn't find anything wrong with the shunt and didn't replace it since it has actually lasted almost 5 months. After the surgery, her headaches and the eye pain were gone! I personally think that after the last pressure change she had back in early August caused the pressure to build up too high. I think that during surgery, some of her CSF was allowed to escape and allow the pressure to decrease. I think that is what gave her some much-needed relief. If I am correct, then I imagine in time, in the near future, her pressure will start to rise again causing her symptoms to return. I hope for her sake that it's not anytime soon! As of April 29, 2005, Delonie has continued to do well since her last surgery last August. Her last CT scan showed the ventricles looked absolutely great. Her neurosurgeon told us that we no longer needed to do Ct scans every 6 months. We can now start doing just yearly checkups!! That is... if she doesn't start showing any symptoms again. Isn't that wonderful news? We are hoping that the worst is all behind us now! :)

July 9, 2005, well, we almost made it a year without any shunt revisions. At the end of June, Delonie attended church camp. While at Church Camp, she was accidentally kneed in the back of her head during a church game. She got a bad headache afterwards, but she was feeling much better the following day. One week later, she was at Wild River Country with family members. Delonie was riding one of the rides called the Vortex. Unfortunately, Delonie forgot to raise her head at the bottom of the ride and she hit her head again. Delonie eventually ended up being hospitalized again because she developed real bad headaches, nausea, stomachache and double vision again. Her programmable shunt reprogrammed on it's own. She has a high-pressure shunt on the left that was programmed to 190. The shunt reprogrammed to 130. We are not sure what caused the shunt to reprogram because she didn't take direct blows to the shunt. We think it was just the initial blows to her head is what caused the shunt to reprogram. Well, they put her in the hospital so they could gradually increase the pressures back up to 190. This was going to be a slow process. So, she stayed about 10 days in the hospital. They put her on Topomax to see if that would help with the headaches. She was finally discharged, but was readmitted again a few days later. Delonie's symptoms never did go away, they actually became worse. So, I took her back to the ER. The shunt had reprogrammed again, but this time it dropped all the way to 30. The surgeons tried to increase the pressure, but the xray they did following the increase didn't show a change in the reading. The programmable shunt was stuck on 30 and wouldn't budge. Unfortunately, the ventricle on the right ballooned out. Her regular surgeon was out of town so we had to use a new surgeon that we were unfamiliar with. The new surgeon decided to fix the shunt on the right that had not been working since last year. It quit working after her coma, but the one programmable one was keeping things at bay, so they left it alone. However, this new surgeon said her problem was on the right this time and that is where we needed to focus our attention and revise that shunt. On August 3, 2005, Delonie had the surgery to revise the shunt. However, she didn't recover as we had hoped she would from this surgery. She continued having double vision, headache, stomachache and nausea. However, the surgeon wanted to give her some time and see if the symptoms would go away on their own, so she was discharged. On August 6, 2005, Delonie had to be readmitted again. Delonie had a bad allergic reaction to something used during her surgery again. However, they caught it in time before it became too serious and she was put on antibiotics and steroids. They think it was from the Ioband they use to cover the wounds after surgery. So, they will not be using it again during any of her surgeries. The Topomax wasn’t helping, so they took her off of it. On August 30, 2005, Delonie has continued having the double vision, headache, stomachache and nausea.  She had a really bad day. I took her to the ER and she was admitted for observation. They decided to do a MRI on her to see if it would show anything. The MRI showed a pool of CSF in the third ventricle. Her surgeon wants to see if this CSF will absorb on it’s own. If not, he does want to do a Fenestration of the Third Ventricle to get rid of the fluid if it doesn’t absorb on it’s own. Which is kinda similar to the ETV, but they go in a little differently. I guess we are just going to wait and see if it will absorb on it’s own. The surgeon said this could possibly be why she has not fully recovered since her surgery. Oh, they also put her on Diamox to see if that will help absorb the excess fluid. On September 17, 2005, Delonie is still having problems and her double vision seems to be getting worse. I am really concerned about the amount of painkillers she is taking on a daily basis. She is taking two oxycodone with two Tylenol piggy backed on top of it every 6 hours. I am so worried what all this medication is going to do to her liver if she keeps having to take it. Not to mention what it is doing to her stomach. It doesn’t take the pain completely away.  It is just enough to take the edge off.  On October 17, 2005, Delonie still isn’t getting any better. She has missed so much school. Just getting up and trying to get ready for school is very difficult. I took her back to the ER this evening, but we were discharged again. We saw her surgeon the following day on the 18th. I told him we have got to do something. This was becoming ridiculous and I was tired of seeing her in so much pain and I was very concerned about the amount of pain pills she had to take on a daily basis. She is scheduled for surgery on October 31st.  He will be performing a Fenestration of the Third Ventricle. On October 29, 2005, Delonie’s symptoms became worse and we ended up back in the ER two days early from when her surgery was scheduled. Her surgeon can’t find anything wrong other than this pool of CSF in her third ventricle. The shunt seems to be working fine. Hopefully, this surgery will bring her some much-needed relief. On October 31, 2005, Delonie came through the surgery fine. She has a titanium plate now at the base of her skull.  Delonie’s headaches and double vision was much better after having the surgery. However, she is still having pain from the surgery, but it’s more incision pain than anything. Now, she just has to go through the recovery period. Lord, I hope this works! I will update again as soon as I can. On November 7, 2005, Delonie was finally discharged from the hospital. Her head and neck is still hurting her pretty bad, but the surgeon said that was to be expected. She has about a 6-inch incision. She also saw the Ophthalmologist today, and he said her optic nerves looked much better. On November 10, 2005, Delonie’s double vision is back again and seems to be worse. It’s not only when she looks straight ahead now, it’s also when she looks down. The surgeon said her pain meds and steroids might be contributing to the vision problem and suggested we cut her pain meds back. She will be having stitches removed on the 14th. On November 17, 2005, Delonie is still not feeling well. I took her back to the ER and her CT scan showed the ventricles a little enlarged, but the surgeon said that was nothing to be alarmed about after having the last surgery. He said she just needed more time to recover from her last surgery. Her white blood cell count in her urine was a little elevated and she was running a low grade temp. So, they put her back on an antibiotic. I found that really odd since she was on steroids from Oct 31st through November 14th and less than a week after being off of them, her white blood cell count was up in her urine and she was running a low grade temp. I guess we will wait and see what happens and hope she starts feeling better soon! On November 22, 2005 Delonie is still not feeling well. Surgeon is totally clueless on what is going on. He basically told me that there is nothing else that he can do other than send her to a Neurologist and to a Headache Specialist. He said the headaches and the double vision obviously weren’t due to her shunt.  She has an appointment in January to see the Neurologists. On November 30, 2005, I had to take her back to the ER with more vision problems, debilitating headaches and stomachache. Now, I am really upset because I feel like she was put through this last surgery for no reason and she is no better today than she was before the surgery. Her bloodwork and CT scan came back fine this time. Her ventricles are actually a little smaller than they were on the ER visit on the 17th, but she isn't getting any better. I was very angry because I felt like the ER doctors were blowing me off again and I told them that she has been dealing with these headaches and double vision problems since July and something needs to be done and this was becoming ridiculous. I told them she has an appointment in January to see the Neurologists, but she can’t wait till then. She needs something done now and someone needs to see her. Another ER doctor came in and I talked with her. I guess I made the other one feel like he was inadequate. The last ER doctor we saw; agreed that something didn't sound right despite the bloodwork and CT scan. I told them if they blow me off and something happens to her, I would sue their butts off for negligence. Well, I guess they realized how angry and serious I was because they made some calls and got her appointments moved up for the following day. On December 1, 2005,  Delonie saw the Ophthalmologist. Delonie has lost 4 points in her vision field since they saw her while she was in the hospital. She said that Delonie's left eye had the tendency to drift off, but Delonie did really well as far as keeping the eye aligned, but now it was constantly drifting off and becoming weaker. She was very concerned and she called the Neurosurgery clinic to let them know she thinks the shunt was malfunctioning because her optic nerve had a little swelling. They did another CT, but it came back fine, so the surgeon didn’t want to do surgery. The Neurosurgery clinic scheduled a Cisternogram and shuntogram on December 13th. Hopefully, this test will give us some answers.  On December 2, 2005 We saw the Headache Specialist today, and he also noticed that she had a little swelling going on in her optic nerve. He doesn’t think this is migraine related at all. He also thinks this has to do with her shunts. So, he called the Neurosurgeons to let them know his diagnosis, but they informed him that the CT scan came back fine and they didn’t think it was the shunt. On December 13, 2005 Delonie had the Cisternogram and shuntogram done. In order to do this test; she had to have a lumbar puncture. The tests showed that she didn’t have a very good flow of tracer from her shunt to her abdominal cavity. We left for an hour and had to go back to see if the tracer would start showing up. Unfortunately, it didn’t. So, they told us we would have to go back the following day for another xray. On December 14, 2005, we went back to the hospital for another xray.  Delonie was feeling horrible. We just barely made it inside the door before she started having projectile vomiting. They put her in a bed for awhile till the nausea passed.  She was finally able to do the xray, but the tracer wasn’t showing up in her abdominal cavity as much as it should have been. They told us they would be contacting the surgeon to let him know the results of the test. On December 16, 2005, Delonie developed a Cerebral Spinal Fluid leak from her procedure. Due to the CSF leak, she started having low-pressure headaches. They are actually called Spinal Headaches. Bless her heart, she couldn’t sit up for more than 10-15 minutes without becoming violently ill. After another visit to the ER, she was admitted. I talked with the surgeon about the results of her cisternogram and shuntogram, and he said she might end up needing to have surgery again to replace the shunt. He said we would wait and see how she does after the CSF leak seals back off. He said he didn’t want to do any surgery with her CSF being so low. Which I totally agreed with that! On December 19, 2005, Delonie’s CSF leak finally sealed off, and she is doing better. Man, that was a horrible experience for both of us! I hope we never have to go throught that again! She was discharged from the hospital today. We are going to start homebound schooling again because she is having such a difficult time and she has missed so much school. It's going to take her awhile to get caught up on everything. I sure hope all this doesn't keep her from being able to graduate next May! For updates for 2006; click on the 2006 icon below.