deloniesstorypg1

The beginning of her illness
~2000~

My daughter Delonie, (pronounced like Melanie but with a "D"), was 12 at the time she was diagnosed with her Hydrocephalus. She had always been a pretty healthy little girl, except for a few childhood colds. She has always been very bright, funny and a real go getter. It was the week Arkansas was hit with a huge ice storm in December of 2000 when Delonie began showing her first symptoms. Our power was off for several days and we were all cooped up in the living room trying to stay warm at night by the fireplace. Delonie started complaining with a headache. We gave her some Tylenol and the headache went away. About four hours later she began complaining about headaches again. So we gave her some more Tylenol and she was able to sleep through the evening. The next day she seemed to be fine until evening time and she began to complain about headaches again. We assumed it was because she wasn't sleeping comfortably in her bed. As I mentioned above, she had been sleeping on the couch to stay warm by the fireplace since we were not able to run the heat. We also figured it was because we had not eaten a good meal in three days. We were eating junk food because we were not able to cook. She is use to eating a four-course meal every night. So we assumed that was why she was feeling so bad. We gave her some Motrin that night and she slept pretty well. The following day, we got our power back on. Thank goodness!! We sure did miss our heat. :) She did fine for a few more days and then our nightmare began.

On December 22, 2000, on a Wednesday morning, around 4:45am, my husband and I were awakened by her screaming. I ran to her bedroom and she was sitting on the edge of her bed holding both sides of her head. She was rocking back and forth on the bed screaming and crying at the top of her lungs. I was terrified. I had never seen my daughter in so much pain and I didn't have a clue what was happening to her. She was nauseated, so I got up her up and walked her to the bathroom. Her balance was off and she was walking like she was drunk. She began throwing up violently and was screaming for me to make her head stop hurting. I felt so helpless. I managed to get her settled down enough to ask what all her symptoms were, besides the obvious ones. She told me she was nauseated, dizzy and her neck was a little stiff feeling. She also had a horrible headache and she felt like her head was going to explode. I immediately called her pediatrician and explained to her what was going on. She said it sounded like meningitis and for me to take her straight to the Hospital.

I took her in and the doctors at the ER didn't think it was meningitis, so they didn't test her for it. They believed it was migraines and that is what they were going to treat her for. I told them I didn't think it was migraines because the lights didn't bother her and most people who have migraines can't stand the lights. Sounds and motion drove her nuts. I requested a CT scan of her brain and questioned them about brain tumors and aneurysms. They told me it was not necessary for them to do a CT scan because they didn't think it had anything to do with her brain. I told them I wanted a reason why they didn't feel like it had anything to do with her brain. They told me the reason they didn't feel like it had anything to do with her brain was because patients with tumors and aneurysms usually always have symptoms leading up to their diagnosis and she had never had any problems in the past. She had always been pretty healthy. So they treated her for migraines and sent us home late that evening. Well, that didn't set well with the family or me. I know my daughter better than anyone else and a Mother knows when something is not right. So Moms..listen to your instincts!!! Thank God I did!

I called her pediatrician back the following day and requested an office visit with her. I told her I didn't feel comfortable with the diagnosis the ER doctors gave me. I took her in and her pediatrician examined my daughter. She looked into her eyes with that little light they always shine in your eyes and she told me that the disks in the back of her eyes were very fuzzy and very unclear. She said they should be crisp and very clear and Delonie's was extremely fuzzy. She told me she wanted me to take her to the Ophthalmologist in another clinic downstairs and see if he saw the same thing that she found. So we left and went to the other clinic and sure enough, he saw the same thing. He said there was a tremendous amount of pressure coming from within her head. He told me that we needed to go back to her pediatrician's office. So we went back to her pediatrician's office and by the time we got back up there, the ophthalmologist had already called her pediatrician with the results of his test. Her pediatrician talked with us and told us that something was definitely going on inside her head and if it was anything we hoped it would only be a Pseudotumor Cerebri.

It was getting late, but she wanted me to take her to another Hospital for a CT scan because she was uncomfortable sending her home knowing there was something going on inside her head. We went and had the CT scan done at another hospital. I kept asking the Radiologist what they saw and of course they will not tell you anything!!! They told me I would need to talk to her pediatrician about the results. I thought GREAT!!! They are going to send us home knowing something was wrong. Well, by the time we reached home, the phone was ringing; it was her pediatrician calling.

She told me they found a large mass on the backside of my daughter's brain that appeared to be a large tumor. My world felt like it had been shattered in that one phone conversation. She wanted me to pack our bags and go straight to the ER at Childrens Hospital, where two neurosurgeons would be waiting on us. We got our bags packed and I drove us to the hospital. When we arrived they wanted to do a MRI to get a better picture of what they saw on the CT scan. There was good news and bad news. Good news it was not a true tumor. However, she did have a large blockage on the backside of her brain that was inoperable and she had cerebrospinal fluid (CSF) backing up on her brain. The increase in the CSF was causing a lot of pressure to build up in the ventricles of her brain. They told us it was Hydrocephalus, and they needed to put in a VP shunt. The shunt is placed in the ventricle of the brain and it has a tube and valve attached to it. The tubing runs down under the skin, down the side of her neck; under her collarbone and then it is ran down into her abdominal cavity where the CSF drains off and is reabsorbed by the body there. The following link will show how the VP shunts are placed and common problems found with shunts. We also found out this same day that she had been having things go black in her vision. When we asked her how come she never told us about the problem with her vision, she told us she thought it was just normal!!! Of course, she knows now that it is NOT normal and she must tell us when something is going on with her vision. Before you ask, yes she had eye exams in school and this was never caught.

The neurosurgeons put her in PICU that evening and operated the following day. They said when they placed the shunt; the CSF blew like a Geyser. He said he hasn't a child come through that hospital with that much pressure on their brain in years. The neurosurgeons told me how lucky I was that I got her there when I did and that I was lucky I followed my maternal instincts. She came through the surgery just fine and they allowed her to come home on Christmas Eve of 2000 so she wouldn't be in the hospital on Christmas Day. Delonie recovered very quickly.

I questioned the neurosurgeons on how could she have gotten Hydrocephalus at the age of 12. I have always thought children were born with it. They told me they think she may have been born with Hydrocephalus even though she did not have the appearance of most babies born with Hydrocephalus. She did not have any of the complications that some babies have that are born with Hydrocephalus. Looking at her she appeared to be a normal looking child and you would never think anything was wrong with her. They said they think the area of her brain that had the blockage had been like a spider web while she was growing up. Allowing just enough of the CSF to flow through the openings. As she grew, the spider web was closing up, until it blocked completely off at the age of 12. Which is when she started showing her first symptoms.

We were told what to watch for as far as shunt malfunctions and shunt infections when we left the hospital. We made several trips back and forth to the doctors for CT scans and shunt series throughout the year because the symptoms of a shunt malfunction or infection are just like your typical virus symptoms. You can't take a chance and just assume it's a virus. Because of the Hydrocephalus, I have to look at the symptoms she has at a totally different viewpoint. If they have an infection or malfunction and they are not treated immediately it can lead to death, stroke, coma or severe mental retardation. So it is vital that she is seen and any shunt malfunction or infections are diagnosed and treated immediately.

~2002~

Delonie made it to Feb 13, 2002, before she had to have her first shunt replaced. She started having headaches again and was experiencing cold symptoms this time. Considering some of us in the household were sick, we assumed she was getting a cold like we had. I admit, I did hesitate on taking her on in at first. I went ahead and took her on in after a few days since she didn't seem to be responding to any of the medication that I was giving her. We found out her shunt had malfunctioned on her. Now that was scary!! They replaced her shunt and once again she came through surgery just fine.

On September 13, 2002, exactly 7 months later her headaches started up again and she wasn't feeling well. She had been sleeping more than usual. So I took her back to ER and they said her shunt had broke. Not malfunctioned, but broke into two pieces. The ventricles in her brain were enlarged and they replaced the shunt the following day on Saturday. She came through that surgery just fine and was released that Sunday. The following day on the 15th, she was having more headaches and double vision. Her headaches were worse than the one she had before the surgery. I was told the double vision would clear up and that it was caused from all the pressure that she previously had on her brain and that she may still have some lingering effects from the anesthesia. They repeated her CT scan again and they said the ventricles had not gone down any. They thought the new shunt had already malfunctioned. They thought she was going to need surgery again. They discussed putting in a "bolt" that would measure the pressure on her brain and decided later not to. She was admitted back into the hospital that morning and was scheduled for surgery. On Tuesday the 16th, the neurosurgeons came in that afternoon and Delonie was actually feeling better and the headaches were gone. So the neurosurgeons wanted to hold off on surgery to see if she just needed more time to heal from the previous surgery. They wanted to see how she did through the night and repeat the CT scan Wednesday morning. It totally amazes me how she copes with all this. I tell everyone she is a brave little trooper! She has never once let this scare her or let it get her down. I am so proud of her. She doesn't use her illness as an excuse not to do homework and does pretty darn well in school when she is not sick or missing school due to her illness. I think she handles the situation better than I do at times. When the doctors tell her surgery again..she just grins and says "oh no....not again! " Meanwhile, I am fighting back the tears!

Anyway, on Wednesday morning Sept 17th, she had the Ct scan done and the ventricles had begun to shrink back down so they decided not to do surgery and sent us home. The neurosurgeon wanted me to take her to see the ophthalmologist so they could test the pressure on her optic nerves. I took her in and I was told the optic nerves had a lot of pressure on them. The ophthalmologist wasn't sure if this was new pressure or if this was pressure she still had from just having the surgery on the 14th. He also said that she had some permanent damage in the optic nerves and that he was going to have to start monitoring her every 6 months because this could eventually lead to blindness. He was also concerned about her not being able to recognize colors very well in her left eye. He wanted to repeat the test in two weeks. I informed the neurosurgeon on the results from the ophthalmologist. Her neurosurgeon didn't necessarily agree with the eye doctor because he said when there is that much pressured built up on the brain, it causes pressure on the optic nerves and it sometimes makes the optic nerves appear to be damaged when in fact they are not. So he agreed with having her retested in two weeks to see if the optic nerves would improve in their appearance. I was really concerned at this point. I didn't know whom I should put my trust in. Who was I supposed to trust? The ophthalmologist who deals with eye problems every day or the neurosurgeon who deals with Hydrocephalus and complications arising from it everyday? After a few days her double vision started clearing up.

On October 2, 2002, Delonie came home from school and wanted some Tylenol for a headache. I asked her when did the headache start. She told me she had it all day and that she went to the nurse's office at school and they gave her two Tylenol. She said the Tylenol didn't take away the headaches. She fell asleep during one of her classes, which is highly abnormal for her. She also told me her eyes had been hurting the night before, but she didn't have a headache when she went to bed. I was upset with her because she didn't come to me and tell me her eyes had been bothering her. She has been told how important it is for me to know these things. She told me she kept waking up all night with her eyes hurting. She said her stomach had also been bothering her that morning, but that was feeling better later in the day. Her spirits were really good although she didn't feel very well. She was laughing and cutting up with me, but I was concerned that the Tylenol had not been helping and her eyes were hurting. I took her back to the ER and oh my God I am soooooooooooooo glad I did!!! They did another CT scan on her and while we were waiting for the results of the Ct scan, she took a turn for the worse. She began vomiting and the headaches got really severe to the point she was screaming, crying and thrashing around in the hospital bed. We finally got the results of the CT scan and it showed the ventricles were more enlarged than they had ever been. She was going to need surgery again. They admitted her back into the hospital so they could monitor her closely until they could do the surgery the following day. There were 12 other patients scheduled for surgery ahead of her, so it was going to be late the next day before they could do surgery on her.

Well, through the night Delonies condition continued to get worse. They didn't want to give her anything stronger than Tylenol because they were afraid it would mask any new symptoms that would develop if she became worse. I felt so helpless and it was so hard watching her lie there knowing how much pain she was in. I could see the fear in her eyes for the first time. By 6:30am the following morning, she was unresponsive and had went into a deep sleep. That was the most awful feeling in the world not being able to wake my child up and a feeling I will NEVER, NEVER forget. They rushed her into emergency surgery and replaced the shunt. She came through the surgery with flying colors once again, but her double vision was worse and she had a gray spot in her vision field in her left eye this time. I asked the neurosurgeons about it and they said that was not uncommon considering the pressure she had had on her brain. Her neurosurgeon said it was probably due to the pressure on the optic nerves again and that would go away more than likely. He told me to just keep on top of that making sure it cleared up. Two days after her surgery, her head began to swell up like a basketball. Her eyes were swollen shut and the skin around her nose swelled up and you couldn't tell she had a nose other than you could see the two nostrils. Her lips were swollen, her skin was very hot to the touch, and her skin was clammy like she had a fever, but she didn't have a fever. The skin on her face had a chapped appearance to it and was very itchy. She had no swelling anywhere else on her body except for her head. They thought it might have been from the shunt possibly. They were thinking it was made up of some kind of new material than what had been previously used to make the shunts. (They later found that the materials had not been changed) or they thought it could possibly be from the surgical dressing tape used during the surgery. So they recommended we only use paper tape on her from here on out. They tried giving her Benedryl, but that didn't work, so they put her on steroids for 3 days. After about 3 days the swelling was gone. They ruled out any allergic reactions to medications. They said if she had an allergic reaction to any of the medication, that she would have had the swelling all over and not localized to just her head. They kept her in the hospital for observation for 3 days until the swelling was all gone and they allowed us to go home and told us to continue to monitor her double vision for any further complications.

On October 9, 2002, I took her back in to have the stitches removed. We didn't get to see the neurosurgeons because they were in surgery. So I told the Triage nurse that she was still having some double vision in her eye. She told me that she would let the neurosurgeons know and have them call me back. Well, they finally called and recommended that I take her back to see the ophthalmologist again. So I did. She had a big decrease in her vision in the left eye since our last visit back in September. Her ophthalmologist began seeing her every 3 weeks so he could monitor her vision more closely. The damage done to her optic nerve was irreversible and surgery would not correct the problem.

She continued to keep complaining about headaches and nausea over the next few weeks. Her neurosurgeons kept repeating her CT scans. They would tell me one of the ventricles would be a little increased, but nothing to be to alarmed about and the next time they would do CT scans it would be fine. The neurosurgeons said it could be that the shunts were trying to malfunction. They wanted me to keep a close eye on her. (I hate that when they tell me that!!!)

On October 14,2002, the headaches began to get worse again. When they repeated her CT scan they found one of the ventricles (can't remember now if it was the 3rd or the 4th ventricle) was very enlarged again. This time when they did surgery they were going to put in a second shunt. So she now has bilateral shunts. One on each side of her brain. The second shunt would enable the other ventricle that wasn't draining to drain properly. She came through surgery fine, but she had another allergic reaction to something like she did on Oct 2nd after the surgery. So they went ahead and started her on steroids. They can't figure out what is causing the swelling. After 3 days the swelling was all gone again. She did okay for about a month and the headaches and nausea started back, but they were sporadic. Through the months of December and January, she was having a lot of headaches and we were making several runs to the ER and all CT scans were coming back okay and the ventricles appeared to be normal looking for her. Her headaches and nausea would be at their worst in the morning times when she got up and started moving around. Sometimes they would last all day and night, sometimes they would ease up by late afternoon. Which made it impossible for her to attend school. She missed nearly two whole months of school because of her symptoms. They suggested her shunts could be over draining and they suggested I pump a lot of fluids down her high in caffeine. They said that should help if the shunts were over draining. That really threw me for a loop because I always heard things high in caffeine could cause headaches. Unfortunately, the high caffeine drinks haven't helped.

~2003~

On February 11, 2003, her neurosurgeons decided to put in Codman programmable shunts. They had come to the conclusion that her shunts were over draining. They said she would be a good candidate for the programmable shunts. She came through that surgery fine other than her head swelled up like a basketball again. So she was put on steroids again to control the swelling. I have talked with other mothers whose children have these types of shunts and I have heard nothing but wonderful stories about them. So we are hoping that these new programmable shunts will be the answer to our prayers. One week later, her headaches started back up. I took her back to the ER and the ventricles in her brain were all enlarged again. Since she had the programmable shunts, they could just change the pressure in the shunt by using a magnetic device held over the skin where the valves were located and change the pressure readings. She had to go through one more pressure change about a week after that. And these new shunts saved her from having to go through two more surgeries because they were able to adjust the pressure using the magnetic advice! It is now April of 2003 and she has been headache free since the end of February!!!!! Yea!!!!!!

I have taken her to see an allergist so we can try to find out what is causing her delayed swelling in her head after every surgery. They know it is an allergic reaction to something, but they don't have a clue what is causing it. Her allergist has never heard of delayed swelling from surgery like she has had. They put her through a lot of testing and we have found nothing so far that would be causing her head to swell. They did suggest that if she has to have another surgery (knock on wood she doesn't) but if she does, they want a detailed list of everything that the surgeons and the anesthesiologist uses that come into contact with her skin and every kind of medicine administered. They also suggested us taking photographs for them so they can see exactly what her swelling looks like. They said this way;; they will at least have something to start with instead of trying to make guesses on what is going on.

She missed over 127 days of school this past school year (during her 9th grade year) due to problems with her Hydrocephalus. She managed to pull off all A's and B's on her all her subjects after completing her makeup test and work. Except for a bad grade in her English and Science class. So she is going to need to take the second semester of her English over. They are going to allow her to make up the last semester of English that she failed in the 9th grade, during the summer between the 10th and 11th grade. However, I am so proud of her for her accomplishments. She has never used her illness to get out of doing schoolwork or accomplishing her goals she sets out for herself. She is very bright and has a wonderful personality and very funny! There is nothing that she can't do if she sets her mind to it. The only thing that the doctors requested is that she not participate in rough sports that could cause a blow to the head where her shunts are located. She has a lot of family and friends who love her and support her in everything she does.

On November 3, 2003, I had to take Delonie back to the ER. She started having some really bad headaches again and started vomiting. Her Ct scan showed that one of her ventricles was very enlarged. The neurosurgeons adjusted the pressure using the magnetic device to see if that would help. They admitted Delonie into the hospital so they could monitor her and do another Ct scan on the 4th to see if the ventricle had went down. They didn't want to do any surgery unless they had too. When she woke up on the 4th her headache wasn't as bad and she was no longer vomiting. So they wanted to hold off a day and see if she would continue to get better. However, by that afternoon the headaches had started back up again. They ended up doing surgery on November 5th to replace the programmable shunt on the right side. Her CT scans showed that the enlarged ventricle had not gone down any and they said her shunt had malfunctioned. I asked them to please make a list of everything that she was going to come into contact with during her surgery and all medications administered to her during her surgery. That is what the allergist had suggested for us to do if she had to go through surgery again. That way, we can try to find out what has been causing her to swell up so badly after surgery. The anesthesiologist and the surgeons acted like they didn't want to do that. Which really aggravated me. The surgeon suggested they give her steroids through her IV before having surgery to see if that would help prevent all the swelling. As I mentioned above, the steroids are the only thing that stops it. So they gave them to her before surgery and it worked. She didn't have any swelling this time. Which is great, but it still doesn't tell us what was causing all the swelling. And I feel like we really need to find out what it was so we can avoid coming into contact with it in the event that she will need another surgery in the future. I worry about her having a worse allergic reaction in the future if we don't find out what is causing it. She came through surgery fine and was released from the hospital on November 6th.

On November 9, 2003, I had to take Delonie back to the ER. She started having some bad drainage from her incision and her neck and shoulder was hurting her. Delonies white blood cell count was up. She had an infection in her incision. She was admitted back into the hospital and put on IV antibiotics. They weren't for sure if the infection had reached her shunts or not. The surgeon said if it had reached her shunts than we were in for trouble. They would need to remove both shunts and put in an EVD drain to drain the infection off and to keep the pressure down in the ventricles while the shunts were removed. He said if that was the case, then she would be in the hospital for a minimum of two weeks until the infection cleared up. After the infection cleared up they would need to do surgery again to replace both of her shunts back in the ventricles. This really scared me. We have never had to deal with an infection, so this was all new to us. They finally came to the conclusion that the infection had not reached her shunts and we had caught the infection just in time. Praise God!!! She stayed in the hospital and was given IV antibiotics and was released on November 13th. She finally got to come home. She will continue taking a strong antibiotic for the next two weeks to make sure we get the infection cleared up. We will have to continue to watch her for symptoms of infection because if all the bacteria are not cleared up, it can start multiplying again.

As of November 16, 2003, she is doing great and she will go back to school on the 17th. She will go and have all her stitches removed on the 19th. We were hoping that this was going to be the last surgery for awhile. However, little did we know that within two more months, I would be facing every mother's worst nightmare. Delonie was re-admitted again for surgery in February. This time, there were complications during surgery and after surgery. She had to be moved to PICU where she was listed in critical condition. She had to be put into a self-induced coma due to hemorrhaging. To read about her coma and her recovery, please click on the icon below labeled "NEXT"