Well what an eventful few months Jordan has had. He started throwing up and not sleeping very well again. (Not like we have really slept in 3 years anyway) We called his neurologist to make an appt to see him and were told March was the soonest we could get in. Within 2 weeks Jordan's seizures had increased significantly from 2-3 per day to 8-10 per day. I called the neurologist office back and they got us an appt for Dec 22, 2011. Just a few days before Christmas but we will take it, better than March.
Jordan stayed the same until his appt, when we got to the appt we spoke to the doctor about the changes in Jordan as well as his mood changes. Jordan is always happy and he became very grumpy and antisocial over the last few months. The Neurologist decided to change his meds to Divalproic and told me Jordan must have his liver checked every few months because if his valproic acid levels increased too much it could cause permanent liver damage or liver failure. This scared the crap out of me but we were out of options. Jordan needed something to help with the seizures and sleep. The doctor also nicely gave me a verbal spanking for not calling him earlier to discuss the sleeping issues. As he said a mother of 4 can’t go 3+ years with 4-5 hours sleep per night. (Well I knew I was a little grumpy but thought I was doing fine) I explained that Jordan went to sleep each night around 1-3am and we had a toddler that wakes up at 6am. The doctor explained that this would not do and I would be no good to any of my kids especially Jordan if we kept this up, he promised me we would figure out a way to get Jordan to bed at a normal time so everyone could sleep better. We left the office with a script for new meds for Jordan and a requisition for blood work every 4 months to check his liver. We had to wear Jordan off of his old meds as he started the new meds and by Jan 7th he would be completely off his old meds.
Jordan seemed to take to the new meds very well. The throwing up seemed to really slow down, the seizures were back to a minimum and he was sleeping from 10pm every night until 7am every morning. We thought this was a miracle drug that helped everything. I was happy and getting lots of sleep and so was Jordan. The first few weeks of January were tough as Jay’s grandmother passed away and it was rough on the whole family but Jordan still seemed to be thriving and getting better every day.
January 18th I had tucked the kids all into bed and was reading some articles on the internet. I went up to check on everyone about 10:30pm like I do every night and all was good...4 kiddies all sleeping in their beds. I came back down and started reading the news online and within what seemed like a few minutes noticed it was 12:30am. I decided I had better go to bed but before I did I was going to go in and kiss Jordan since it was now his 12th birthday (Jan 19 2012) As I got to the top of the stairs I knew something was not right, I could hear noises coming from Jordan’s room. I opened the door and he was in full grand mal seizure. Choking on his tongue had lost all control of his bowels and his whole body was convulsing. I picked him up gently and carried him downstairs, laid him on the couch on his side and made sure he could not hurt himself in any way. I grabbed the phone and called 911 as I ran upstairs to wake Samantha up. I explained to the 911 operator what was happening and that I didn’t know how long he had been seizing for but that his last grand mal seizure lasted 57 minutes. They assured me the ambulance was on their way. I explained to Samantha who was scared out of her wits that everything would be ok and I needed her to call dad at work and tell him what was going on. I got dressed and the ambulance arrived. Jordan and I left promptly and I hugged Sam and felt so bad leaving her so upset and not being able to comfort her. I hope one day the other 3 kids understand if it was them I would have left with the ambulance just as fast as well. I was scared but trying to be strong so Sam would calm down. We drove to the hospital doing speeds I don’t even want to say. Were cut off by a taxi driver (love taxi drivers ugh) and I could hear the EMT in the back patching through to the hospital saying we were enroute and needing the trauma bay open with the resuscitation team waiting. That was it, I couldn’t hold it in anymore and I started to cry softly and quietly. Again trying to be strong. We arrived at the hospital and were rushed into the trauma room. Immediately we were surrounded by so many nurses and doctors trying to help Jordan. I answered all of their questions calmly all the while looking over their shoulders to see if they had got the seizure to stop. Jay showed up at the hospital within half an hour and Jordan was still seizing when he showed up. As soon as I saw him I started to cry and we both looked at each other knowing if they didn’t get this to stop soon what the outcome could be. Jordan continued to seize for an hour and 22 minutes that we know of. It was the scariest hour and 22 minutes of our lives. During that time Jordan was very close to cardiac arrest and the resuscitation team was standing at the head of the bed the entire time. His O2 levels were dropping below 60% and his heart rate was skyrocketing to 190 beats per minute plus and his body temp raised to 109.2F. I couldn’t watch the monitors anymore; it felt like I was watching my son die in front of me. They ended up giving him several doses of ativan and Dilantin before he started to calm down. Once they got the seizures to stop Jordan went for a CT scan, chest x-ray, MRI, lots of blood work, 3 failed spinal taps and a shunt series to see if they could find the cause of the seizure. Everything came back negative accept the blood work came back positive for an infection; they started him on aggressive antibiotics assuming it was an infection in his brain fluid. Not knowing how he would get an infection in his brain we just agreed to more testing over the next few days. Jordan was admitted after 14 hours in emerg and he was sleeping well in his bed. Friday was pretty uneventful as he was exhausted and slept the whole day and night. Saturday he was awake for a few hours and even gave us some smiles. Saturday afternoon the 48 hour blood cultures came back positive for an infection again so we kept Jordan on the antibiotics and they had paged infectious disease to come see us. Saturday evening I noticed he was acting strange and told his nurse we needed to watch him as he was moaning in pain and rubbing his head. That was approx 5:30pm. 6:30pm Jordan had another seizure, 8:30pm another seizure and 2 more back to back at 12:30am Sunday morning. I stayed at the hospital all weekend on a cot so I was close by to monitor Jordan as his O2 had dropped significantly, heart rate had jumped again....basically it was happening all over again. Sunday Jordan rested and slept all day, he didn’t wake up at all, Monday was much like Saturday he woke up for several hours, gave us a few smiles and slept. Monday night/Tuesday Morning between 2-4am Jordan had another 3 seizures. Jay came home from work and we went back to the hospital to be with Jordan. Words cannot describe how many tears we shed in these days and nights. The only feeling you can have going through this without any answers was that your son is slowly dying and there is nothing you can do to help him. For the next 2 days Jordan slept, the doctors said his valproic levels in emerg were 210 and the safe range is 350-700, by Monday his levels had dropped to 114, Tuesday morning they doubled his doses of the divalproic to see if we could get him into the therapeutic range and control the seizures. Wednesday the infectious disease doctors came to see us and told us there was no infection, the blood samples were negative not positive and it was a contaminated sample. We had just given Jordan 6 days of a very aggressive antibiotic for no reason, because someone contaminated his blood sample. Frustrated to say the least. Thursday the doctors came in and told us as long as Jordan stayed seizure free another 24 hours we could bring him home as there was nothing more they could do for him there. In the 8 days we were in hospital we had many visitors and people supporting us, from friends and family, I can’t thank you all enough. Sad to say the one person that should have been there for Jordan was not but maybe that is for the better. Friday afternoon we came home from the hospital. Jordan was to be kept on 24/7 emerg watch and needed to stay close to the hospital for at least a week.
It is now Feb 24, 2012 and Jordan has been back in school for 2 days after over a month off. We have rescue meds at home to give him if he goes into a large seizure again prior to calling the ambulance. He is not back sleeping as he was before the seizures but we will get there....after all, all he has done for a month is sleep so I am sure he is caught up even if I am not.
Sitting in a house watching your child sleep for a month straight is not my idea of a good time. Feeling like you are holding your breath waiting for something to happen is stressful. I don’t like to ever put my worries on others nor do I ever want sympathy from anyone but no parent should ever have to go through what we have went through with Jordan. I fear this is just the beginning and it scares the hell out of me. I know so many people think I am so strong, I am not, I cry, I am a mother I have feelings and my heart breaks I just hide it well from others. I guess this blog is as much for me as it is for Jordan. I can write my feelings, cry and get it out without actually having to talk to someone about it. I love to help others and be a shoulder to cry on but I don’t want to be the person crying on someone’s shoulder. Please keep our family in your thoughts and send positive energy our way. I have never asked for Jordan to be normal but I am asking for him to stay with us as long as he can. I am not ready to let go of the fight and neither is he. Seeing him back in school this week has made me so happy to see the smile on his face when the bus pulls up in front of our house. I cannot imagine a day without seeing that smile. <3
Thursday, February 23, 2012
Sunday, June 26, 2011
A message from Me!!
Did you know that those who appear to be really strong are those that are most sensitive? Did you know that those who spend all their time protecting others really need someone to protect them? Did you know that the three hardest things in life to say are: I love you, I am sorry and Please help me.
This quote rings so very true for me, I have been told so many times that I appear to be so strong but, believe me when I am alone in the evenings I cry and I worry and I am likely one of the most sensitive people you could even meet. I do try and spend all of my time protecting others sometimes forgetting about myself but, I do need someone to protect me.I know that is hard to believe from a big tough girl that likes to rough house with the boys. As a small child that person was my daddy and now that I am grown I look to my husband, the best man in the world (aside from my daddy) to protect me.
Last but not least I want to tell all of my friends and family...I LOVE YOU, you all mean so much to me and I wouldn't be half the woman I am today without each and every one of you. I AM SORRY, sorry for anything I have ever said or done to upset you. Sorry for any decisions I have ever made that have affected your life in a negative way and I am sorry for not returning phone calls, texts. emails and messages as soon as I should. And finally PLEASE HELP ME, please help me to be the best mom I can be for all of my children but most of all for Jordan since he will always be a child. Please help me to keep the strength when I am feeling weak and please help me to pick up the pieces of my life and carry on no matter what happens and how much I think I can't do it anymore.
To you all my love runs deep within my veins and I appreciate all you do for us as a family. In case you might of guessed tonight is one of those nights when I do not feel like the strong, tough, super-mom some of you think I am. I am Jordan's mom, I am Jordan's voice and I look forward to the future even though it scares the hell out of me! Thank you all for taking the time to read Jordan's blog, I know it is long, and I have been known to ramble on at times but I do appreciate it.
One last thing: I LOVE YOU, I AM SORRY and PLEASE HELP ME...don't ever be afraid to say it!
This quote rings so very true for me, I have been told so many times that I appear to be so strong but, believe me when I am alone in the evenings I cry and I worry and I am likely one of the most sensitive people you could even meet. I do try and spend all of my time protecting others sometimes forgetting about myself but, I do need someone to protect me.I know that is hard to believe from a big tough girl that likes to rough house with the boys. As a small child that person was my daddy and now that I am grown I look to my husband, the best man in the world (aside from my daddy) to protect me.
Last but not least I want to tell all of my friends and family...I LOVE YOU, you all mean so much to me and I wouldn't be half the woman I am today without each and every one of you. I AM SORRY, sorry for anything I have ever said or done to upset you. Sorry for any decisions I have ever made that have affected your life in a negative way and I am sorry for not returning phone calls, texts. emails and messages as soon as I should. And finally PLEASE HELP ME, please help me to be the best mom I can be for all of my children but most of all for Jordan since he will always be a child. Please help me to keep the strength when I am feeling weak and please help me to pick up the pieces of my life and carry on no matter what happens and how much I think I can't do it anymore.
To you all my love runs deep within my veins and I appreciate all you do for us as a family. In case you might of guessed tonight is one of those nights when I do not feel like the strong, tough, super-mom some of you think I am. I am Jordan's mom, I am Jordan's voice and I look forward to the future even though it scares the hell out of me! Thank you all for taking the time to read Jordan's blog, I know it is long, and I have been known to ramble on at times but I do appreciate it.
One last thing: I LOVE YOU, I AM SORRY and PLEASE HELP ME...don't ever be afraid to say it!
Jordan’s Journey: September 2010- June 2011
Well a pretty uneventful winter and spring. Jordan had a mild cold and stomach flu during the winter months and he lost several pounds when sick. He has gained it back now. Jordan’s 11th Birthday was on January 19th, he of course was spoiled and had loads of fun. Jordan loves eating cake with his hands. The rest of the winter and spring was pretty calm for Jordan anyway.
Jordan started seeing a new paediatrician this year. So far so good...he is very nice and thorough. He believes Jordan may have Cerebral Palsy as well as all of his other neurological and health issues. I wonder how something like CP can go undiagnosed in a child that has seen as many doctors and specialists as Jordan has in his lifetime. This new paediatrician has set up the appts and paperwork for Jordan to finally be seen by genetics. We have asked and asked for Jordan to have genetic testing done so we know everything we are dealing with and we could possibly have some answers but, it never happened. There were always more pressing matters to deal with when it came to Jordan.
Today is June 26, 2011 and we have a very special appt tomorrow. We have Jordan’s genetics appt. We have waited 11 years for this appt and I am a little nervous, anxious and excited. I hope to get some answers tomorrow or in the near future anyway. I have said for 11yrs I can deal with anything as long as I can be prepared and research information. Living with a child every day not knowing what tomorrow will bring, not knowing when he could take a turn for the worse, not knowing his full medical diagnosis and not knowing when we may have to say goodbye to our son is so difficult. I don’t think anyone really understands. Even broad general answers will be better than what we have right now. I can not wait for tomorrow to be here and for whatever kind of answers they can give us. I am not holding my breath but I am sure not going to sleep tonight either.
Monday, January 3, 2011
Jordan's Journey Sept 2010
Well little Jordan had an exhausting month. He started back to school this month and he was so excited to see his school bus pull up in front of the house. He seemed to be doing a little better on the clonazepam and his seizures were down to 2-4 a day.
One saturday evening I was getting ready to give Jordan his bath and get him ready for bed so I asked Travis to sit with him and wait while I ran the bath. Travis came running into the bathroom a few minutes later and said I had better come look at Jordan. I asked him why, what was wrong and he said Jordan was shaking and choking. Jay and I rushed into the bedroom and Jordan was having a grand mal seizure. It was the scariest thing I have ever witnessed from our children. We quickly ran Jordan down the stairs and tried to see if we could get him to come out of the seizure. We laid him on his side and made sure he was not choking and talked to him to see if we could get a response. Jordan was not responding to us at all he continued to convulse and shake. We rushed him into the van and to the hospital. (No sense calling the ambulance since we only live minutes from the hospital we have found out we can get him there quicker)
When we arrived at the hospital they took Jordan in right away and the doctor came over to see him and asked how long he had been convulsing for. At that time it had been about 10 minutes. The nurse was cutting his clothes off as they gave him his first dose of ativan. Another nurse was trying to get an IV started and the doctor said they needed the IV to give him some more meds to stop the seizure. What was minutes seemed like hours and the doctor gave Jordan another dose of ativan through the IV. The seizure continued. They then decided to give him another dose of ativan rectally. By this time he had been having the grand mal seizure for 30-35 minutes. I asked the doctor what was wrong why wasn't the seizure stopping and he assured me they were doing everything they could. Jordan was given another dose of ativan through his IV and about 10 minutes later I told the doctor I knew that a grand mal seizure that lasts more than 5-7 minutes can cause a stroke and I felt he needed to do more to stop this. He pulled me aside and said they were doing all they could but they had to be sure not to give Jordan too much medicine or it could kill him. I was in tears and asking why this was happening. I don't think I have ever lost my cool in the ER before with dealing with doctors but I was very close. I was a mother in pain, hurting and feeling helpless. There was my little boy suffering and I felt like nobody was helping him and there was nothing I could do. After about 50 minutes of the seizure continuing they gave Jordan a dose of dilantin and within 2-3 minutes after that the seizure stopped. In total it was almost an hour, although it felt like hours and hours. Jordan was given 4 doses of ativan and 1 dose of dilantin in all.
I sat with Jordan holding him, stroking his hair and crying. I felt so helpless and wanted him to be ok. The doctor came back and asked me if I needed anything. I told him I needed answers. I explained everything to him from the last 10 years and told him I had been given nothing. We were told basic details and I was starting to get upset and felt like the doctors knew more than they were telling me. He read over Jordan's chart and told me that all he could say was that Jordan's disability was progressing and they knew it would get worse. So I guess we just have to wait and see what's next I said to the doctor and he nodded his head yes. Jordan slept and slept. He was exhausted and they had given him enough meds to make him sleep for hours. I was visited by a friend and she helped me to pass the time waiting for Jordan to wake up. We had several long talks with the doctor and found out he had worked with both my Aunt and my Uncle in different hospitals in Toronto. I asked him if Jordan was going to be admitted or sent home. He told me there was no reason to keep Jordan in the hospital he would just sleep on and off for a few days and they were sending us home with a follow up appt to see the Neurologist. We were sent home and Jordan slept for days. He was so tired and his body was exhausted. He had lost several pounds because he wasn't staying awake long enough to eat. Once back to normal we started feeding Jordan loads of carbs to try and pack on a few pounds. We went to the follow up appt with the Neurologist and Jordan's seizure meds were doubled and we were told we would be called with an appt in 4 months again but if we noticed Jordan's seizures increasing to call for an appt sooner.
It is now Jan 2011 and the beginning of a new year. I wish for health and happiness for Jordan and a quiet year for us all. Jordan had a great Christmas holiday. He was spoiled along with his 2 brothers and his sister. We bought a new LCD TV for Jordan for his bedroom since he loves his movies so much and it is his one true happy time.
I want to thank each and every family member and friend that has been there to help us through some tough times, I know the toughest are yet to come and I might look to some of you to help me through it again.I want to thank my awesome children and my wonderful husband for always standing by me and knowing I try my best to be a great wife and mom. I thank you Jay for taking my children and raising them as your own, for being there for me through it all and always being a shoulder to cry on. I thank you all of my friends and family for spending countless hours at the hospital with me, bringing me coffee or food to the hospital or ER, for listening to me cry and stress and even for being there for me when everything seems fine. Please remember I would pick you up if you fell down, I would hug you if you were sad, I would cry if you cried and I will continue to love each and every one of you in your own way. Jordan, me and our family could not have made it this far without the support of our great family and friends. I will not lie and I can say some days it seemed like I was alone in all of this and I felt like I could not handle anymore but I always seem to come through it with minimal damage. To date Jordan has spent over 2 years total in the hospital and he has gone through 11 surgeries. He is the strongest person I know, and his strength continues to grow. Thank you and I will add updates and more info as time goes on.
Meda :)
One saturday evening I was getting ready to give Jordan his bath and get him ready for bed so I asked Travis to sit with him and wait while I ran the bath. Travis came running into the bathroom a few minutes later and said I had better come look at Jordan. I asked him why, what was wrong and he said Jordan was shaking and choking. Jay and I rushed into the bedroom and Jordan was having a grand mal seizure. It was the scariest thing I have ever witnessed from our children. We quickly ran Jordan down the stairs and tried to see if we could get him to come out of the seizure. We laid him on his side and made sure he was not choking and talked to him to see if we could get a response. Jordan was not responding to us at all he continued to convulse and shake. We rushed him into the van and to the hospital. (No sense calling the ambulance since we only live minutes from the hospital we have found out we can get him there quicker)
When we arrived at the hospital they took Jordan in right away and the doctor came over to see him and asked how long he had been convulsing for. At that time it had been about 10 minutes. The nurse was cutting his clothes off as they gave him his first dose of ativan. Another nurse was trying to get an IV started and the doctor said they needed the IV to give him some more meds to stop the seizure. What was minutes seemed like hours and the doctor gave Jordan another dose of ativan through the IV. The seizure continued. They then decided to give him another dose of ativan rectally. By this time he had been having the grand mal seizure for 30-35 minutes. I asked the doctor what was wrong why wasn't the seizure stopping and he assured me they were doing everything they could. Jordan was given another dose of ativan through his IV and about 10 minutes later I told the doctor I knew that a grand mal seizure that lasts more than 5-7 minutes can cause a stroke and I felt he needed to do more to stop this. He pulled me aside and said they were doing all they could but they had to be sure not to give Jordan too much medicine or it could kill him. I was in tears and asking why this was happening. I don't think I have ever lost my cool in the ER before with dealing with doctors but I was very close. I was a mother in pain, hurting and feeling helpless. There was my little boy suffering and I felt like nobody was helping him and there was nothing I could do. After about 50 minutes of the seizure continuing they gave Jordan a dose of dilantin and within 2-3 minutes after that the seizure stopped. In total it was almost an hour, although it felt like hours and hours. Jordan was given 4 doses of ativan and 1 dose of dilantin in all.
I sat with Jordan holding him, stroking his hair and crying. I felt so helpless and wanted him to be ok. The doctor came back and asked me if I needed anything. I told him I needed answers. I explained everything to him from the last 10 years and told him I had been given nothing. We were told basic details and I was starting to get upset and felt like the doctors knew more than they were telling me. He read over Jordan's chart and told me that all he could say was that Jordan's disability was progressing and they knew it would get worse. So I guess we just have to wait and see what's next I said to the doctor and he nodded his head yes. Jordan slept and slept. He was exhausted and they had given him enough meds to make him sleep for hours. I was visited by a friend and she helped me to pass the time waiting for Jordan to wake up. We had several long talks with the doctor and found out he had worked with both my Aunt and my Uncle in different hospitals in Toronto. I asked him if Jordan was going to be admitted or sent home. He told me there was no reason to keep Jordan in the hospital he would just sleep on and off for a few days and they were sending us home with a follow up appt to see the Neurologist. We were sent home and Jordan slept for days. He was so tired and his body was exhausted. He had lost several pounds because he wasn't staying awake long enough to eat. Once back to normal we started feeding Jordan loads of carbs to try and pack on a few pounds. We went to the follow up appt with the Neurologist and Jordan's seizure meds were doubled and we were told we would be called with an appt in 4 months again but if we noticed Jordan's seizures increasing to call for an appt sooner.
It is now Jan 2011 and the beginning of a new year. I wish for health and happiness for Jordan and a quiet year for us all. Jordan had a great Christmas holiday. He was spoiled along with his 2 brothers and his sister. We bought a new LCD TV for Jordan for his bedroom since he loves his movies so much and it is his one true happy time.
I want to thank each and every family member and friend that has been there to help us through some tough times, I know the toughest are yet to come and I might look to some of you to help me through it again.I want to thank my awesome children and my wonderful husband for always standing by me and knowing I try my best to be a great wife and mom. I thank you Jay for taking my children and raising them as your own, for being there for me through it all and always being a shoulder to cry on. I thank you all of my friends and family for spending countless hours at the hospital with me, bringing me coffee or food to the hospital or ER, for listening to me cry and stress and even for being there for me when everything seems fine. Please remember I would pick you up if you fell down, I would hug you if you were sad, I would cry if you cried and I will continue to love each and every one of you in your own way. Jordan, me and our family could not have made it this far without the support of our great family and friends. I will not lie and I can say some days it seemed like I was alone in all of this and I felt like I could not handle anymore but I always seem to come through it with minimal damage. To date Jordan has spent over 2 years total in the hospital and he has gone through 11 surgeries. He is the strongest person I know, and his strength continues to grow. Thank you and I will add updates and more info as time goes on.
Meda :)
Sunday, October 24, 2010
Jordan's Journey- 10yrs Jan 2010-Aug 2010
10yrs old Jan 2010-Aug 2010:
In Feb 2010 we had noticed some changes in Jordan. His moods had changed; he wasn’t the happy go lucky boy he had been for years. He was moody and seemed VERY antisocial. He seemed to be getting ill more often but there was no reason for his illnesses. He didn’t seem to be getting colds or flu’s but he would go 2 or 3 days without keeping food down and then he would be fine for a few days. We also noticed at this time Jordan would stare off into space for long periods of time and we could not bring him out of one of these episodes. We had called his paediatrician and made some inquiries but were waiting to hear back. On a Saturday afternoon I talked to Jay and said Jordan hadn’t kept anything down for 3 or 4 days and these episodes seemed to be happening quite often 20+ times a day and I thought it was best we didn’t wait for answers anymore. We needed to take him to emerg. So off we went and of course hours and hours later we were admitted to the hospital. Just as we had expected Jordan had started to have petit mal seizures. He was started on some seizure medication and they ran a bunch of tests to make sure his shunt was working well. We were told the seizures could have started as a progression of his disability, because of puberty or a number of reasons. There was nothing we could do about it but treat the seizures and try and find out why he wasn’t able to eat anything. Jordan had lost almost 10lbs in this short timeframe of 1-2 weeks. He was only 38lbs at 10yrs old to begin with; he couldn’t afford to lose weight. The doctors told Jay and I Jordan’s stomach could be failing and we should prepare for anything. I had many friends come and spend countless hours at the hospital with me so that Jay could focus on the other children and make sure their school work was not hurting and they knew they still had their parents support for anything. Jay and I had long talks and cried many times and we always finished our talks with we will deal with whatever Jordan needs us to together and as a family. The shunt tests all came back ok and once the seizure meds started working Jordan started eating and keeping food down. There was nothing wrong with his stomach he just wasn’t feeling well from the seizures so he wouldn’t eat and when he did he would throw up. After a week of being in the hospital we were happy to go home and be a family again. It was a rough week but we once again made it through. We kept Jordan home from school for 3 weeks to make sure the meds were starting to work and he was gaining some weight back. Jordan was very tired and slept most of these 3 weeks. Slept and ate lots. Jordan and Zander have become buddies, well as close to buddies as they can be with Jordan still wondering if we are going to take Zander back for a refund. Zander cries when Jordan gets on the bus in the mornings and Jordan tries to pull Zander’s hair. Zander is a bald baby with just a little fuzz. They sure are cute together though.
Jordan had a pretty good spring and summer he gained back all of the weight he lost in Feb. and March and he was happy to be back in school after the summer vacation. In late Sept 2010 on a regular sat night I was going to bath Jordan before bed and give him a snack. I asked Travis to go sit with Jordan for a minute. Travis came back and said Jordan was shaking and choking. Jay and I ran to see what the matter with Jordan was and he was having a grand mal seizure. We put the 3 boys in the van and drove to the hospital as fast as we could. Jay dropped Jordan and me off at the hospital and he came home to wait for Samantha to get home. I told him I would call as soon as the seizure has stopped. We walked into the emergency room and the doctors immediately started to give Jordan dose after dose of adivan to try and stop the seizure. After 45 minutes I asked the doctors why it wasn’t stopping and what else could they do to help Jordan. The doctor looked at me and said he was doing everything he could and they had to make sure they didn’t give him too much medication too fast. After 50-60 min the seizure had finally stopped. The doctors and nurses looked exhausted. Poor Jordan had 6 IV’s in that time and many doses of adivan and dilantin. He too was exhausted. I had a friend show up to keep me company as I had called Jay and told him everything was fine and Jordan just needed to sleep. I told Jay to stay home and get some rest and make sure the other 3 kids got rest as I had no idea if we were being admitted or if we would be discharged in several hours. Jordan slept and slept, the ER doctor was amazing he came in and talked to me every half an hour and made sure we were ok, he checked on Jordan often and finally he said we might as well take him home to sleep off the meds and the after effects of the seizure. Again we left with little to no information though. Jordan has an appointment on Oct 18 2010 with his neurologist so maybe then we will find out some answers. We know Jordan’s life expectancy is not great and we know every minute we get with him is a minute we cherish but some kind of answers would be nice some day. I think 10 years proves I have been patient.
This is our special family, we love them all and we welcome all of our friends into our home as if they are part of our family. I am writing this so we have something to look back on when Jordan is no longer with us and we can remember all of the parts of his life. I want all of our friends to read and enjoy Jordan’s journey as painful as parts of it were and are going to be. He is a strong lil man and he gives me strength in ways only I might understand. We have been to battle together as a family and we will continue to fight. I have not always had the support from some people who should have been there but as I see it, it is their loss not to be involved in someone as special as Jordan. It is not every day we can say we have seen an angel and I believe I get to see that every day within Jordan. As all of our close friends and family knows Jordan fell in love with Movies and TV at the hospital when he was 1 yr old and he still loves TV and movies. Jordan has his own TV and DVD player in his room and he loves to sit and watch and he laughs and squeels in delight.
Meda J
In Feb 2010 we had noticed some changes in Jordan. His moods had changed; he wasn’t the happy go lucky boy he had been for years. He was moody and seemed VERY antisocial. He seemed to be getting ill more often but there was no reason for his illnesses. He didn’t seem to be getting colds or flu’s but he would go 2 or 3 days without keeping food down and then he would be fine for a few days. We also noticed at this time Jordan would stare off into space for long periods of time and we could not bring him out of one of these episodes. We had called his paediatrician and made some inquiries but were waiting to hear back. On a Saturday afternoon I talked to Jay and said Jordan hadn’t kept anything down for 3 or 4 days and these episodes seemed to be happening quite often 20+ times a day and I thought it was best we didn’t wait for answers anymore. We needed to take him to emerg. So off we went and of course hours and hours later we were admitted to the hospital. Just as we had expected Jordan had started to have petit mal seizures. He was started on some seizure medication and they ran a bunch of tests to make sure his shunt was working well. We were told the seizures could have started as a progression of his disability, because of puberty or a number of reasons. There was nothing we could do about it but treat the seizures and try and find out why he wasn’t able to eat anything. Jordan had lost almost 10lbs in this short timeframe of 1-2 weeks. He was only 38lbs at 10yrs old to begin with; he couldn’t afford to lose weight. The doctors told Jay and I Jordan’s stomach could be failing and we should prepare for anything. I had many friends come and spend countless hours at the hospital with me so that Jay could focus on the other children and make sure their school work was not hurting and they knew they still had their parents support for anything. Jay and I had long talks and cried many times and we always finished our talks with we will deal with whatever Jordan needs us to together and as a family. The shunt tests all came back ok and once the seizure meds started working Jordan started eating and keeping food down. There was nothing wrong with his stomach he just wasn’t feeling well from the seizures so he wouldn’t eat and when he did he would throw up. After a week of being in the hospital we were happy to go home and be a family again. It was a rough week but we once again made it through. We kept Jordan home from school for 3 weeks to make sure the meds were starting to work and he was gaining some weight back. Jordan was very tired and slept most of these 3 weeks. Slept and ate lots. Jordan and Zander have become buddies, well as close to buddies as they can be with Jordan still wondering if we are going to take Zander back for a refund. Zander cries when Jordan gets on the bus in the mornings and Jordan tries to pull Zander’s hair. Zander is a bald baby with just a little fuzz. They sure are cute together though.
Jordan had a pretty good spring and summer he gained back all of the weight he lost in Feb. and March and he was happy to be back in school after the summer vacation. In late Sept 2010 on a regular sat night I was going to bath Jordan before bed and give him a snack. I asked Travis to go sit with Jordan for a minute. Travis came back and said Jordan was shaking and choking. Jay and I ran to see what the matter with Jordan was and he was having a grand mal seizure. We put the 3 boys in the van and drove to the hospital as fast as we could. Jay dropped Jordan and me off at the hospital and he came home to wait for Samantha to get home. I told him I would call as soon as the seizure has stopped. We walked into the emergency room and the doctors immediately started to give Jordan dose after dose of adivan to try and stop the seizure. After 45 minutes I asked the doctors why it wasn’t stopping and what else could they do to help Jordan. The doctor looked at me and said he was doing everything he could and they had to make sure they didn’t give him too much medication too fast. After 50-60 min the seizure had finally stopped. The doctors and nurses looked exhausted. Poor Jordan had 6 IV’s in that time and many doses of adivan and dilantin. He too was exhausted. I had a friend show up to keep me company as I had called Jay and told him everything was fine and Jordan just needed to sleep. I told Jay to stay home and get some rest and make sure the other 3 kids got rest as I had no idea if we were being admitted or if we would be discharged in several hours. Jordan slept and slept, the ER doctor was amazing he came in and talked to me every half an hour and made sure we were ok, he checked on Jordan often and finally he said we might as well take him home to sleep off the meds and the after effects of the seizure. Again we left with little to no information though. Jordan has an appointment on Oct 18 2010 with his neurologist so maybe then we will find out some answers. We know Jordan’s life expectancy is not great and we know every minute we get with him is a minute we cherish but some kind of answers would be nice some day. I think 10 years proves I have been patient.
This is our special family, we love them all and we welcome all of our friends into our home as if they are part of our family. I am writing this so we have something to look back on when Jordan is no longer with us and we can remember all of the parts of his life. I want all of our friends to read and enjoy Jordan’s journey as painful as parts of it were and are going to be. He is a strong lil man and he gives me strength in ways only I might understand. We have been to battle together as a family and we will continue to fight. I have not always had the support from some people who should have been there but as I see it, it is their loss not to be involved in someone as special as Jordan. It is not every day we can say we have seen an angel and I believe I get to see that every day within Jordan. As all of our close friends and family knows Jordan fell in love with Movies and TV at the hospital when he was 1 yr old and he still loves TV and movies. Jordan has his own TV and DVD player in his room and he loves to sit and watch and he laughs and squeels in delight.
Meda J
Jordan's Journey- 2yrs-10yrs
2yrs old -10yrs old:
From 2yrs old until 10yrs old Jordan was very healthy and didn’t have any shunt issues or feeding issues. He continued the diet of pureed foods with added calories such as cream and butter and pediasure. When Jordan was just over 2 years old I had started dating a wonderful man named Jay. He truly loved me and my children and understood all of the health issues that came with us. Jay was always there for the children and myself. Jay said when our relationship started to get more serious that he wanted to marry me and my children, he wanted to have them as his own children and take care of them as he would his own. He was truly a great friend and I think that is why we fell in love with him. Jay moved in with us in the summer of 2002 and other than a few day trips to the hospital for Strep Throat and Ear infections Jordan was healthy for several years. In the winter of 2003 Jordan went through a tough time gaining weight, he continued to struggle to thrive and gain any weight. At 3 years old almost 4 he only weighed 22lbs. This winter Travis went through his second major heart surgery so Jordan spent some time at CPRI where they cared for him while we spent some time caring for Travis. Within a week after Travis’ surgery we were all back home caring for each other. Jay’s family was so great with my children, they accepted all 3 of them as part of their family and Jay’s dad was especially close with Jordan. They had a bond like no other; they could both make each other smile like no one else could. May 27 2005 Jay’s father passed away and it was devastating for the whole family and I think even today Jordan still remembers his papa. In October of 2005 Jay and I were married as a family, we had Samantha, Travis and Jordan as our wedding party and we had a family ceremony. We were getting married as a family after all not just a couple. In June 2009 we welcomed a baby into the family, baby Zander came home and this was quite an adjustment for Jordan. He had always been the baby and he was not fond of children that were smaller than him or that cried. It was a long and I mean long...many year decision to have another child but we did it and we wouldn’t trade it for the world. Jordan grew accustomed to Zander being in the house but every time we got into the van to go somewhere Jordan always looked into the infant car seat and looked at Jay or I as if to say “oh that thing is coming with us again”. We figured it would just be a matter of time before Jordan would understand the baby was not going away and he was here to stay.
From 3years old until Feb 2010 Jordan was seemingly healthy. He had flu’s and colds but just the same sort of thing every child goes through. Sometimes Jordan’s immune system left him weak and pretty ill from normal illnesses, he would lose weight and regress quickly if he was sick but we always managed to nurse him back to good health.
From 2yrs old until 10yrs old Jordan was very healthy and didn’t have any shunt issues or feeding issues. He continued the diet of pureed foods with added calories such as cream and butter and pediasure. When Jordan was just over 2 years old I had started dating a wonderful man named Jay. He truly loved me and my children and understood all of the health issues that came with us. Jay was always there for the children and myself. Jay said when our relationship started to get more serious that he wanted to marry me and my children, he wanted to have them as his own children and take care of them as he would his own. He was truly a great friend and I think that is why we fell in love with him. Jay moved in with us in the summer of 2002 and other than a few day trips to the hospital for Strep Throat and Ear infections Jordan was healthy for several years. In the winter of 2003 Jordan went through a tough time gaining weight, he continued to struggle to thrive and gain any weight. At 3 years old almost 4 he only weighed 22lbs. This winter Travis went through his second major heart surgery so Jordan spent some time at CPRI where they cared for him while we spent some time caring for Travis. Within a week after Travis’ surgery we were all back home caring for each other. Jay’s family was so great with my children, they accepted all 3 of them as part of their family and Jay’s dad was especially close with Jordan. They had a bond like no other; they could both make each other smile like no one else could. May 27 2005 Jay’s father passed away and it was devastating for the whole family and I think even today Jordan still remembers his papa. In October of 2005 Jay and I were married as a family, we had Samantha, Travis and Jordan as our wedding party and we had a family ceremony. We were getting married as a family after all not just a couple. In June 2009 we welcomed a baby into the family, baby Zander came home and this was quite an adjustment for Jordan. He had always been the baby and he was not fond of children that were smaller than him or that cried. It was a long and I mean long...many year decision to have another child but we did it and we wouldn’t trade it for the world. Jordan grew accustomed to Zander being in the house but every time we got into the van to go somewhere Jordan always looked into the infant car seat and looked at Jay or I as if to say “oh that thing is coming with us again”. We figured it would just be a matter of time before Jordan would understand the baby was not going away and he was here to stay.
From 3years old until Feb 2010 Jordan was seemingly healthy. He had flu’s and colds but just the same sort of thing every child goes through. Sometimes Jordan’s immune system left him weak and pretty ill from normal illnesses, he would lose weight and regress quickly if he was sick but we always managed to nurse him back to good health.
Jordan's Journey- 3mths-2yrs
3 Months old – 2yrs old:
I was in an abusive relationship and had little to no support from my husband at the time. It was very difficult for my children and I. I was trying to give Jordan everything he needed to survive as well as provide for my other 2 children and make them feel that mommy was still there for them.
At 3 months old Jordan has been going to see the neurosurgeon every other week to have the CSF (cerebral spinal fluid) measured in his skull. They had finally decided he needed to have the shunt surgery. Jordan was given a VP shunt on his left hand side of his brain. We were told that his ventricles in his brain were very small and this could lead to blockages happening in his shunt so we had to measure his head once a week and he had continued follow up visits with the neurosurgeon. Jordan was in the hospital several weeks for this surgery and recovery. When surgery was over Jordan had very large dips in his skull where his plates hadn’t been able to close properly due to the excess CSF, I made sure he always had a hat on as I did not want to answer questions from every person we saw. I took Jordan with me, he was never left out but sometimes I just wanted to go outside the home and have a normal outing with my kids. It was hard to make time for Samantha and Travis, I often asked Sam if she felt I spent enough time with her, she always replied “you are so busy with Jordy mommy I love you and we will get to spend time once he is better”. Even at 7 years old she was much wiser than some adults I know, I know she needed me but she didn’t want to hurt my feelings.
Although we had at least 1 doctor or specialist appointment per week for Jordan from 3 months old until 1yr old he was fairly healthy during this time. He was gaining weight very slowly and was not gaining muscle tone at all. He started physiotherapy and occupational therapy at 5 months old. At 10 months old we went to see an optometrist that specialized in optical deformities in the brain. He had done several tests and told us that Jordan would eventually see that his optical part of his brain had suffered some damage from the encephalocele but over time it would bounce back and he would have vision although the doctor did not know how long this would take I was optimistic. Jordan celebrated his 1st birthday and we all celebrated as we did not think he was going to make it that far. He was a seemingly very happy boy and he sure was a fighter.
When Jordan was 15 months old I had noticed he woke up one morning and was very lethargic and the artificial fontanel was bulging and pulsating. We went straight to the emergency room where Jordan went through tests including MRI, CT scan, Shunt-o-gram and x-rays to find out he had a blockage in his shunt and it was malfunctioning. This meant surgery within a few hours. Jordan was given an IV and he was in surgery by 5am the next morning. Jordan woke up from surgery and seemed to be doing well in the PICU (paediatric intensive care unit) so he was sent to his own room in Children’s Hospital of Western Ontario. After a week of recovery we had noticed Jordan was developing a fever and was very lethargic again. They ran all of the shunt series tests again and the shunt was fine. With some blood work we noticed he has a very high white blood cell count so he had an infection somewhere. The doctors examined him and could not find the infection. They withdrew some CSF and tested it. There was the infection. Jordan had got a staph infection from something in the operating room. The infection was in his CSF, brain and running through his shunt. The doctors then ordered a high dose of antibiotics to be given by IV for 5 days. Once the antibiotics were completed we went home with a follow up visit in 2 weeks. When we went to the follow up visit Jordan had not had any fevers or any signs of still having the infection. They withdrew some CSF from the shunt and sent it to be tested. The infection was still there; over the next few days he became very ill and was admitted to the hospital again. He went through another surgery for a shunt revision. Over the next month Jordan had CSF drawn every few days and the infection was getting worse. He was seen by an infectious disease specialist and put on many different antibiotics both orally and IV. Jordan was then sent back to surgery where he had another shunt revision and an external drain put in to drain all of the infected CSF from his brain and shunt. For the next month he had several surgeries for new external drains and shunt revisions. A total of 7 surgeries were done that summer and 15 weeks spent in the hospital. The most comforting thing Jordan had in the hospital was TV, the nurses would put on the TV for Jordan while I was out spending time with the other childrenor doing day to day running around. Jordan fell in LOVE with TV and movies that summer. That September he was released from the hospital at 20 months old weighing only 13lbs but clear of any infection. That was my clue to move myself and my children to London to be close to the hospital. During these 15 weeks I had left the abusive relationship with my husband and Jordan`s father, moved over 1100Kms and tried doing everything I could to help Jordan get better as well as still be there for my other 2 children. Some days I look back and wonder how we ever came through it but we did. I was often at the hospital alone or accompanied by my mother as she was always there to support me. My mother has spent so many hours at the hospital and doctors appointments with me. We always thought it was better to have 2 sets of ears instead of 1 and I couldn’t count on anyone else to be there. My dad came to the hospital as much as he could to be there for Jordan and me but he knew mom was there and she gave him daily updates. I had many friends come to the hospital and stay with me for hours on end but I think most of them felt helpless and didn`t know what to do or say. How someone can call themselves a father and not be there even once for his child during something like this is beyond me but it sure made me feel like I had made the correct decision by leaving that relationship.
Jordan was followed by neurosurgery every 6 months for the next 2 years. With only 1 more shunt revision in that time. He was also hospitalized due to his failure to thrive and seen by a dietician. His caloric intake was close to 3000 calories a day and yet he was not gaining much weight. At 2 years old Jordan went through several feeding and swallowing studies and he was booked for surgery twice for a G-tube. Both surgeries were cancelled due to Jordan getting the flu just hours before surgery. When the feeding and swallowing study was done again he was swallowing well on his own and was no longer aspirating 50% of his intake. We had dodged that bullet. Jordan vomited often and this was due to his swallowing issues. He was put on pediasure which is a high calorie drink like formula, and everything he was eating was pureed as he would choke on any food with textures.
I was in an abusive relationship and had little to no support from my husband at the time. It was very difficult for my children and I. I was trying to give Jordan everything he needed to survive as well as provide for my other 2 children and make them feel that mommy was still there for them.
At 3 months old Jordan has been going to see the neurosurgeon every other week to have the CSF (cerebral spinal fluid) measured in his skull. They had finally decided he needed to have the shunt surgery. Jordan was given a VP shunt on his left hand side of his brain. We were told that his ventricles in his brain were very small and this could lead to blockages happening in his shunt so we had to measure his head once a week and he had continued follow up visits with the neurosurgeon. Jordan was in the hospital several weeks for this surgery and recovery. When surgery was over Jordan had very large dips in his skull where his plates hadn’t been able to close properly due to the excess CSF, I made sure he always had a hat on as I did not want to answer questions from every person we saw. I took Jordan with me, he was never left out but sometimes I just wanted to go outside the home and have a normal outing with my kids. It was hard to make time for Samantha and Travis, I often asked Sam if she felt I spent enough time with her, she always replied “you are so busy with Jordy mommy I love you and we will get to spend time once he is better”. Even at 7 years old she was much wiser than some adults I know, I know she needed me but she didn’t want to hurt my feelings.
Although we had at least 1 doctor or specialist appointment per week for Jordan from 3 months old until 1yr old he was fairly healthy during this time. He was gaining weight very slowly and was not gaining muscle tone at all. He started physiotherapy and occupational therapy at 5 months old. At 10 months old we went to see an optometrist that specialized in optical deformities in the brain. He had done several tests and told us that Jordan would eventually see that his optical part of his brain had suffered some damage from the encephalocele but over time it would bounce back and he would have vision although the doctor did not know how long this would take I was optimistic. Jordan celebrated his 1st birthday and we all celebrated as we did not think he was going to make it that far. He was a seemingly very happy boy and he sure was a fighter.
When Jordan was 15 months old I had noticed he woke up one morning and was very lethargic and the artificial fontanel was bulging and pulsating. We went straight to the emergency room where Jordan went through tests including MRI, CT scan, Shunt-o-gram and x-rays to find out he had a blockage in his shunt and it was malfunctioning. This meant surgery within a few hours. Jordan was given an IV and he was in surgery by 5am the next morning. Jordan woke up from surgery and seemed to be doing well in the PICU (paediatric intensive care unit) so he was sent to his own room in Children’s Hospital of Western Ontario. After a week of recovery we had noticed Jordan was developing a fever and was very lethargic again. They ran all of the shunt series tests again and the shunt was fine. With some blood work we noticed he has a very high white blood cell count so he had an infection somewhere. The doctors examined him and could not find the infection. They withdrew some CSF and tested it. There was the infection. Jordan had got a staph infection from something in the operating room. The infection was in his CSF, brain and running through his shunt. The doctors then ordered a high dose of antibiotics to be given by IV for 5 days. Once the antibiotics were completed we went home with a follow up visit in 2 weeks. When we went to the follow up visit Jordan had not had any fevers or any signs of still having the infection. They withdrew some CSF from the shunt and sent it to be tested. The infection was still there; over the next few days he became very ill and was admitted to the hospital again. He went through another surgery for a shunt revision. Over the next month Jordan had CSF drawn every few days and the infection was getting worse. He was seen by an infectious disease specialist and put on many different antibiotics both orally and IV. Jordan was then sent back to surgery where he had another shunt revision and an external drain put in to drain all of the infected CSF from his brain and shunt. For the next month he had several surgeries for new external drains and shunt revisions. A total of 7 surgeries were done that summer and 15 weeks spent in the hospital. The most comforting thing Jordan had in the hospital was TV, the nurses would put on the TV for Jordan while I was out spending time with the other childrenor doing day to day running around. Jordan fell in LOVE with TV and movies that summer. That September he was released from the hospital at 20 months old weighing only 13lbs but clear of any infection. That was my clue to move myself and my children to London to be close to the hospital. During these 15 weeks I had left the abusive relationship with my husband and Jordan`s father, moved over 1100Kms and tried doing everything I could to help Jordan get better as well as still be there for my other 2 children. Some days I look back and wonder how we ever came through it but we did. I was often at the hospital alone or accompanied by my mother as she was always there to support me. My mother has spent so many hours at the hospital and doctors appointments with me. We always thought it was better to have 2 sets of ears instead of 1 and I couldn’t count on anyone else to be there. My dad came to the hospital as much as he could to be there for Jordan and me but he knew mom was there and she gave him daily updates. I had many friends come to the hospital and stay with me for hours on end but I think most of them felt helpless and didn`t know what to do or say. How someone can call themselves a father and not be there even once for his child during something like this is beyond me but it sure made me feel like I had made the correct decision by leaving that relationship.
Jordan was followed by neurosurgery every 6 months for the next 2 years. With only 1 more shunt revision in that time. He was also hospitalized due to his failure to thrive and seen by a dietician. His caloric intake was close to 3000 calories a day and yet he was not gaining much weight. At 2 years old Jordan went through several feeding and swallowing studies and he was booked for surgery twice for a G-tube. Both surgeries were cancelled due to Jordan getting the flu just hours before surgery. When the feeding and swallowing study was done again he was swallowing well on his own and was no longer aspirating 50% of his intake. We had dodged that bullet. Jordan vomited often and this was due to his swallowing issues. He was put on pediasure which is a high calorie drink like formula, and everything he was eating was pureed as he would choke on any food with textures.
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