I wanted to be really good and update a lot about our family, life and especially JD. Well, that hasn't happened! So in the hospital, JD did pretty good for a few days and then he was just straight depressed. He never wanted to do anything. Not the new Wii game we bought him, not Legos, NOTHING! And then he went to bed late, was afraid to go to sleep and then would wake up all night long. He would try to sit up and begin crying and he didn't know why. He said he was just sad. He still had his drain in and we had to clamp it every time he moved and then level it again to make sure his spinal fluid didn't drain too fast or too slow. I think he would wake up and not know where he was at first. So I had to run to his bed and get him to lay down again. I know the long hospital stays had taken its toll. This made being in the hospital a thousand times harder than before. There were 2 days that he basically cried the whole day off and on. He is an emotional roller coaster. One minute he is happy and the next he is really sad and bored.
The nurses and staff are really so great. This guy, Tony helped JD by talking with him and getting him some more Legos to build. He is great with having the kids try to express how they are feeling.
Another problem was getting him to eat. He is so little in the first place. He lost weight and all the muscle he had. He is literally skin and bones. He barely tipped the scale at 38 1/2 pounds. Jordan is almost three years younger and weighs more than him. We are trying to bulk him up with cookies, chocolate, peanut butter (of course) and Pedia Sure choc milk. In the hospital, JD didn't have an appetite at all. He said "I think when they did surgery, it made me feel full all the time." It was a huge effort to get him to even eat one saltine cracker. He did like the microwave popcorn. He had that for all three meals most of the time. He didn't like anything the hospital made. We had to bring the cereal he likes, the milk, and got Little Cesar's pizza and bread sticks quite a few times. Anything to get him to eat. It was exhausting. Threatening him that he could never leave the hospital if he didn't eat.
They had to draw blood I think and he was screaming bloody murder. They weren't able to get the blood from his PICC line this time so he had to get poked. His teenage neighbor next door felt sorry for him and brought over a turtle cookie and a Sunshine Carebear for him. It was so sweet of her. I cried like a baby. Her mom had tears too. That little girl got to go home that day.
He mostly watched movies, played Legos and played the Wii everyday. They removed his drain and put his shunt in. It is a tube going from his brain to his stomach and it drains his spinal fluid. He was that indefinitely now. That recovery was harder than I expected. He had to stay 2 days more after the shunt. I was hoping to leave the day before, but he was in a lot of pain. His ventricles in his brain were not large enough, so the doctor had a hard time getting the shunt in. He did it though and we had another CT scan the next day to check the placement. He still has a little bruise on his neck from where they put it in. He was very sore for a while.
Tamarah picked us up and we left the hospital and stayed at my grandma's house that night. Josh was at home for work. My mom drove us halfway to meet Josh. JD did really well. He was really tired. The next day was Saturday the 16th and JD had a kite festival to go to. We went to get his free kite for reading. He rode in the stroller with a blanket over him so people would not see him. He was afraid of all the people. Then we got to go see RIO. (Very cute movie) Our awesome insurance company and friend Ryan Bishop had rented out the room to watch the movie for free and we got fun prizes and gift cards. It was sweet! Then we went home and vegged out. So at 2 AM, JD came to our room and said his stomach hurt. I thought he had to go poop and couldn't. He went and it still hurt. He began throwing up. 4 times he threw up. He was in so much pain he said he wanted to throw up more because then it didn't hurt for a second. I knew his pain was really intense. We tried his Lortab after he threw up the first time and he obviously wasn't able to keep it down. I took him to the ER.
We were there for 9 long and agonizing hours. Poor kid was begging to go to the docs. Once we got there he said, "I just want them to put me to sleep." He is use to going to sleep for surgery so he doesn't feel anything and that is all he wanted. :(
They took forever to bring some Morphine for him. He was getting so mad as I would too. He kept asking, "What is taking the doctors so long?" I just wished I could take his pain away. (As any mother would) Long story short, he had Kidney stones and was admitted to the hospital. I had a little scare thinking that he would have to have surgery at Primary again for the stones. I was ready to punch somebody at that point. Well, really I was dumbfounded- speechless and almost emotionless. I knew I could not handle another stay at Primary. Not right now. So he was admitted here and only had to stay one night. He passed the stone in the hospital and it was pain free! :)
Now he has started going back to school after lunch. We are starting with half-days for now. It has been rough for him but each day gets better. Today he showed his class his scars and talked about the hospital a little bit. He let the kids ask questions and I helped him answer them. He did really well. His teacher is going to have a hat day next week so all the kids will wear a hat in honor of JD. He loved that idea! I seriously love my family. Jordan and Taylor love their big brother. Taylor rubs his face or back and you can just see it in her face how much she loves him. Jordan shows it in his own silly ways. It is the best feeling to be at home with my kids surrounding me.
JD is still not his normal happy self. We are getting him set up with a councilor. I am pretty sure that he has Post Traumatic Stress. It has been a long and hard year. I need to find out the best way to help him feel loved, happy, safe and most importantly, for him to love himself and realize what an impact and strength he is to our family and others out there as well.
We have felt the love, prayers, thoughts, concern and faith from so many. Thank you is not enough. It means more to us than you will ever know.
I wanted to be really good and update a lot about our family, life and especially JD. Well, that hasn't happened! So in the hospital, JD did pretty good for a few days and then he was just straight depressed. He never wanted to do anything. Not the new Wii game we bought him, not Legos, NOTHING! And then he went to bed late, was afraid to go to sleep and then would wake up all night long. He would try to sit up and begin crying and he didn't know why. He said he was just sad. He still had his drain in and we had to clamp it every time he moved and then level it again to make sure his spinal fluid didn't drain too fast or too slow. I think he would wake up and not know where he was at first. So I had to run to his bed and get him to lay down again. I know the long hospital stays had taken its toll. This made being in the hospital a thousand times harder than before. There were 2 days that he basically cried the whole day off and on. He is an emotional roller coaster. One minute he is happy and the next he is really sad and bored.
The nurses and staff are really so great. This guy, Tony helped JD by talking with him and getting him some more Legos to build. He is great with having the kids try to express how they are feeling.
Another problem was getting him to eat. He is so little in the first place. He lost weight and all the muscle he had. He is literally skin and bones. He barely tipped the scale at 38 1/2 pounds. Jordan is almost three years younger and weighs more than him. We are trying to bulk him up with cookies, chocolate, peanut butter (of course) and Pedia Sure choc milk. In the hospital, JD didn't have an appetite at all. He said "I think when they did surgery, it made me feel full all the time." It was a huge effort to get him to even eat one saltine cracker. He did like the microwave popcorn. He had that for all three meals most of the time. He didn't like anything the hospital made. We had to bring the cereal he likes, the milk, and got Little Cesar's pizza and bread sticks quite a few times. Anything to get him to eat. It was exhausting. Threatening him that he could never leave the hospital if he didn't eat.
They had to draw blood I think and he was screaming bloody murder. They weren't able to get the blood from his PICC line this time so he had to get poked. His teenage neighbor next door felt sorry for him and brought over a turtle cookie and a Sunshine Carebear for him. It was so sweet of her. I cried like a baby. Her mom had tears too. That little girl got to go home that day.
He mostly watched movies, played Legos and played the Wii everyday. They removed his drain and put his shunt in. It is a tube going from his brain to his stomach and it drains his spinal fluid. He was that indefinitely now. That recovery was harder than I expected. He had to stay 2 days more after the shunt. I was hoping to leave the day before, but he was in a lot of pain. His ventricles in his brain were not large enough, so the doctor had a hard time getting the shunt in. He did it though and we had another CT scan the next day to check the placement. He still has a little bruise on his neck from where they put it in. He was very sore for a while.
Tamarah picked us up and we left the hospital and stayed at my grandma's house that night. Josh was at home for work. My mom drove us halfway to meet Josh. JD did really well. He was really tired. The next day was Saturday the 16th and JD had a kite festival to go to. We went to get his free kite for reading. He rode in the stroller with a blanket over him so people would not see him. He was afraid of all the people. Then we got to go see RIO. (Very cute movie) Our awesome insurance company and friend Ryan Bishop had rented out the room to watch the movie for free and we got fun prizes and gift cards. It was sweet! Then we went home and vegged out. So at 2 AM, JD came to our room and said his stomach hurt. I thought he had to go poop and couldn't. He went and it still hurt. He began throwing up. 4 times he threw up. He was in so much pain he said he wanted to throw up more because then it didn't hurt for a second. I knew his pain was really intense. We tried his Lortab after he threw up the first time and he obviously wasn't able to keep it down. I took him to the ER.
We were there for 9 long and agonizing hours. Poor kid was begging to go to the docs. Once we got there he said, "I just want them to put me to sleep." He is use to going to sleep for surgery so he doesn't feel anything and that is all he wanted. :(
They took forever to bring some Morphine for him. He was getting so mad as I would too. He kept asking, "What is taking the doctors so long?" I just wished I could take his pain away. (As any mother would) Long story short, he had Kidney stones and was admitted to the hospital. I had a little scare thinking that he would have to have surgery at Primary again for the stones. I was ready to punch somebody at that point. Well, really I was dumbfounded- speechless and almost emotionless. I knew I could not handle another stay at Primary. Not right now. So he was admitted here and only had to stay one night. He passed the stone in the hospital and it was pain free! :)
Now he has started going back to school after lunch. We are starting with half-days for now. It has been rough for him but each day gets better. Today he showed his class his scars and talked about the hospital a little bit. He let the kids ask questions and I helped him answer them. He did really well. His teacher is going to have a hat day next week so all the kids will wear a hat in honor of JD. He loved that idea! I seriously love my family. Jordan and Taylor love their big brother. Taylor rubs his face or back and you can just see it in her face how much she loves him. Jordan shows it in his own silly ways. It is the best feeling to be at home with my kids surrounding me.
JD is still not his normal happy self. We are getting him set up with a councilor. I am pretty sure that he has Post Traumatic Stress. It has been a long and hard year. I need to find out the best way to help him feel loved, happy, safe and most importantly, for him to love himself and realize what an impact and strength he is to our family and others out there as well.
We have felt the love, prayers, thoughts, concern and faith from so many. Thank you is not enough. It means more to us than you will ever know.
5 comments:
Oh my gosh my heart goes out to JD! And my heart goes out to you! I hope things get back to normal De. So when you say indefinitlly you mean JD will have to wear that shunt forever????
I just want him to be happy again!!
I hope you don't mind I'm stealin a pic :)
I am so sorry for all of you. JD is really an amazing kid. We need to have him over more so he can play with Carter and be happy, maybe tomorrow morning!! I don't know how you are holding up, you really amaze me and I think that you are such a good mommy. I think we need a girls night and chocolate!!! Hang in there. I'm not very good at thinking to have kids over because of my teaching and my stupid head, but honestly JD is never a problem, I would take him anyday!!!
My heart goes out to our sweet little family. I'm so sorry that JD has had to go through all that and you too. How difficult it must be to see him struggling. We will continue to pray for your family.
Makes me so happy to see your kids together at home!!! We love you guys!
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