I have six boys who love Pokemon and were very excited about the release of Pokemon Go. My boys range in age from 6 to 15. They love their video games and we have always worked to help them play video games responsibly. The arrival of Pokemon Go by Niantic is yet another opportunity for us as parents to reinforce moderation and self-control.
Tomorrow we take Lyndan in to visit his neurosurgeon to review his MRI images and assess his progress since his brain surgery in March. For those of you that don’t know, Lyndan was diagnosed with a “Cavernoma” at his brain stem at the end of February 2012. We caught this after he experienced a sharp decline in his mobility and his vision went blurry, eye turned toward his nose, all within a 48 hour period. At first they diagnosed him with a tumor but that was changed with a second sent of MRI images that showed vascular images. One week later, he was being wheeled in for brain surgery. He bounced back quickly and was back to riding his bike a couple months later and was back at school as soon as he felt comfortable enough to do so… just a couple of weeks.
Even though he’s already had one follow-up appointment and they said he looked great, we haven’t seen any MRI images of his brain since the diagnosis. I want to be able to see that the Cavernoma is completely gone. I have a fear that it will return even though they were pretty confident that they got it all. If they got it all, then it’s gone. I just need that little extra reassurance I guess. Praying for good news tomorrow!
Get caught up by watching the playlist below:
The Twin Escapes From His Crib video was filmed on April 27, 2011 when Dayn and Lyan were approximately 20 months old. Dayn had been found at the bedroom door a few times and I (mom) decided I needed to find out his technique for getting out. Read more
Lyndan had his brain surgery on March 14th. That was 3 days before his 9th birthday. I need to take a minute to brag about what an awesome kid he is. He was so brave and listened to everything the Drs said, followed directions and NEVER complained. I never once saw him cry, even when he really wanted to have the breathing tube taken out after surgery. You could tell he was trying so very hard to be patient but it was very uncomfortable.
He woke up at 2:30am, unable to sleep. How can one sleep knowing you were going to have someone operate on your brain in a few hours? We had to be at the hospital for 5:30am so none of us really got much sleep that morning. He was brought up to Day Surgery where he changed into a hospital gown, had a general admission assessment of blood pressure, pulse, temperature…etc. We waited and he was taken down to the operating area for 7:30am. We waited some more. The staff were all arriving and getting things ready. This operating suite only has one booking per day because it is equipped with an MRI. They don’t know how long these surgeries will go so they don’t book another one that day. 8:30am finally rolls around and they are talking about taking him in. We asked about going in with him (which we had talked about while waiting and they had said was possible during our pre-op visits). We were then told that wasn’t going to be possible because they would have had to have us watch a 30 minute video before being allowed in. We weren’t too pleased given that we had been standing there for an hour and could have easily watched the video while waiting. They did allow us to stand by the window and watch him fall asleep, although our view was obscured by people standing around getting the equipment ready. He at least knew we were nearby. (NOTE: For those taking your kids for surgery in the future, ask if there is a video or other requirements you must meet to accompany your child in for surgery.)
Then the waiting began. We had a liason nurse who would run back and forth to relay message to us. It would be about 1.5 hours between updates…sometimes longer. We at first heard the surgery had begun, then heard that it hadn’t and they were taking images with the MRI to see if it was still possible to do the surgery, then heard that the images were just to make sure they were getting in at the best angle and the surgery had in fact started… I was just glad I didn’t hear of any complications happening or that they couldn’t operate.
He had been under at 8:45am and it was around 4:00pm that we heard the procedure was over and they were just “closing”. We were able to go down and see him as he was already bundled up for transport with the ambulance as they were moving him from the adult hospital to the children’s hospital. They said he did have an “event” on the table where his blood pressure dropped while they were stimulating a portion of his brain but he recovered quickly thereafter. He was ventilated but he looked relaxed. We went to our car to meet him over at the ICU at the children’s hospital. We actually ended up behind his ambulance so we were able to take a picture of his trip to the children’s hospital. It helped him to fill in the blanks when he finally woke up as he was wondering how he got there. 🙂
ICU was great. There were a lot of monitors. He had a heart monitor, breathing, oxygen levels, and blood pressure. He had two IVs (one arm, one leg). He also had an arterial line in his arm. They used this to get his blood gas samples and his blood pressure measurement. He also had a catheter, plus his ventilation tube. Eventually, they added a oral gastric tube because he started vomiting. Seeing them have to suction him was probably part of the toughest things of being in the ICU. They had to clear the breathing tube when he threw up or had extra secretions and it wasn’t comfortable for him. He was good to tell them (shaking his head) if he needed them to suction it more or not. They tried using a nasal gastric tube first to reduce the vomiting but the tube kept coiling and they couldn’t get it in place so they had to use the oral gastric. It certainly helped him once he had it in, except it was one more tube.
They left the breathing tube in for 24 hours but when it was time for it to come out, he was very happy. He had been writing on his tablet that he wanted it out. His last message was “Put it out”. It wasn’t comfortable for him when it came out and they asked him to say his name to which he replied, “I can’t talk.” That was good enough. His catheter and his oral gastric tube came out. His arterial line was next. He had a board taped to his arm to support the arterial line and while he was partially sedated he wrote on his tablet, “I don’t know why there is a phone” and point at his arm. Apparently, he had a cell phone taped to his arm. 🙂
He was in the ICU for 2 days but the second day was really only because there were no rooms on the ward. He was doing extremely well and was moved upstairs. There he was able to watch more TV (there was one in the ICU as well), he had an XBOX that could be brought to his room and the nurses all sang him Happy Birthday. We had to deal with more nausea and figuring out the bathroom. He wasn’t able to get up yet but he was a trooper about getting things done the way it had to be during that time.
He had a PCA pump for his morphine, which meant he as able to give himself a dose of morphine (with limitations built in) whenever he needed it. This was great for him as he is a great kid about being responsible. He graduated to getting into a wheelchair and we could take him to another room to look out a window, but because he had the morphine pump, he couldn’t leave the ward. Eventually, he didn’t use the morphine at all in the night and the nurses were only giving him Tylenol. The morphine was discontinued. He was put on anti-nausea meds to settle his stomach but it wouldn’t be until we got home that the nausea ended.
He had a physio assessment to see how he managed stairs and he started using a walker. His last night at the hospital, we went by wheelchair to the hospital’s movie theatre where he was able to watch Happy Feet 2. What a great space for kids to have some normalcy during their hospital stay. There were several kids with IV poles and wheelchairs…etc. It was so neat!
Finally we were able to go home. Note to others, before we left for the operation, I decided to pack an ice cream bucket in our car incase he got queasy. He certainly did! Those little cardboard emesis trays the hospital gives you are not adequate and won’t cut it when you have no place to pull over. Bring a bucket with you!
Home is the best place to be while recovering. His vomiting as stopped. He is now walking without his walker. He still has double vision but that is something that will need to resolve on its own or in a couple months they will start talking about botox or an eye muscle surgery to correct it. He is very happy and has the most positive attitude about it all!
If you have a loved one in the hospital, find out what accommodations they have for families. While he was in the ICU we could have asked for a cot to be brought in. There were too many monitors in there at the time that I would have driven myself crazy worrying about every single chirp going off that I had to choose not to stay. That was tough cause I wanted to be with him but I wouldn’t get any sleep and would make myself sick with worry. The hospital had a limited number of free rooms on the second floor for parents that could be booked through their family resources centre. They were cold rooms and weren’t sound proof but they were a place to stay nearby and free. When he was moved to the ward, there was a bed in the room I could sleep on. The mattress wasn’t very thick so my husband opted not to rotate who got to stay as he felt he wouldn’t be able to be comfortable there. Sleep was interrupted by monitors going off when IV solution was low…etc but not a big deal. It was warm there. For the last couple of nights, my husband got a room with the Ronald McDonald House for $12. What a beautiful facility! He felt it was like a 4 star hotel. I thought it looked like a lodge. They had a free dinner almost every evening and a huge kitchen for families to prepare their own meals and store their own food. Look into your options, connect with a social worker…etc if you are from out of town and see what they can arrange for you.
We are glad to be home. He was in the hospital from the 14th and discharged on the 20th. He begins his physiotherapy today at our local hospital and we are excited by his progress!
It seems we have gone from one extreme to the next. We had an exciting fall with our YouTube video, followed by Christmas and here we are just starting into March and we need your prayers. Read more
I realize I have been neglecting the website. Things have been very busy in our home over the Summer and well, writing a blog post was just one thing too many. Something had to give and this was it.
So, what has been going on? Well, I am now collaborating with a few other YouTubers on a new channel called “TheStayAtHomes.” We are a group of stay at home parents who talk about what life is like managing a home with kids. Some videos are tips, others are just telling you about our experience, some video ideas are a direct response to suggestions from viewers. You can check it out here. http://www.youtube.com/TheStayAtHomes
One of the neat things that happened to me recently was being approached by a TV show called Right This Minute . about doing a segment on my channel. They had discovered a video I posted of Lyan getting his potty seat stuck on his head and wanted to do a story on it. We did an interview through Skype with the show’s cast in Arizona and they aired it the next day. You can watch the segment by following the link. http://www.rightthisminute.com/story/kid-gets-toilet-seat-stuck-his-head
I am going to try and be better at writing on here again. It has been far too long.
At 10 years old, Dylan is a method actor. He is so committed to a role that he cannot imagine not dressing like the character Read more