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.
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