Sunday, November 27, 2011
I hate seeing him like this..
As kids get older the seizures/spasms always turn into something differently. So now his seizures are getting more aggressive! It hurts me to see him like this. He is just a 1 year old. He bit his tongue again and there was blood all over the place and of course in his suction machine. So I don't know what we are going to do now we are on 5 seizure medicine. What more can we do besides wait to see the new neurologist in Jan? I mean I'm sure this guy is going to be AMAZING! But I don't know if I can take this constant seizures.
Wednesday, November 23, 2011
Biggest Challenge
I think the biggest challenge of them all is explaining to children what is going on with Austin. Some people, adults are not as understanding and will stare and I love it when kids ask questions about Austin. Austin is such an amazing little boy that people just need to get to know. We got our prescription to go to get him a new bath seat which might be a bit big for him. They said he's in a weird age when some things will be to small and some to big.
He is currently on tons of medicine:
Topamax 12mL twice a day
Prilosec 5mL once a day
Keppra 3 mL twice a day
Banzel 1mL twice a day
EES .5 three times a day
Valium .4 mL twice a day
Sabril 10mL twice a day
He has his lotion just in case his g tube is looking bad and than also disastat for seizure more than 5 minutes!
Hoping we can come off of some of these since their not working!
He is currently on tons of medicine:
Topamax 12mL twice a day
Prilosec 5mL once a day
Keppra 3 mL twice a day
Banzel 1mL twice a day
EES .5 three times a day
Valium .4 mL twice a day
Sabril 10mL twice a day
He has his lotion just in case his g tube is looking bad and than also disastat for seizure more than 5 minutes!
Hoping we can come off of some of these since their not working!
Some recent pictures
Here are some pictures of my little boy! I love it he's grown so much throughout the time we've had him can't believe he's 1 year old
His Story - Part 2
My husband came up to the hospital and so did my mom. My mom came to take Justin with her so that we could handle what is going on the hospital. Our friends Joe, Amber and Nick came to visit us and watch the baby leave. It was so hard to see Austin leave. I had no access to my little boy. I felt like a piece of me was dying when the people from Children's Hospital showed up. Our friends tried to be there for me. My husband tried to keep a strong face but when you truly don't know what is going on with your child it's a whole different world of unknown.
When he got to Children's they started to run MRI's, CT scans, EEGS and figured out so much. Most of the news I found out on the phone when I went to visit him. Someone told me that he had the severe brain damage than and we didn't know what he would be able to do.
Through it all we started to see Physical Medicine, OT, PT, Neonatal Clinic, ENT, GI and several other people. We went to main campus a lot of other people. We were doing every other week to begin with OT and PT. Neonatal were trying to figure it out and it was at the beginning of 2011 when we got an official diagnosis from Dr. Klumar (we call him our good luck doctor since his name is Karl - Austin is Austin Carl). He diagnosed him with Spastic Quadriplegic Cerebral Palsy. Earlier in the year we started to have more problems with Austin's seizures. Each and every day he'd do this cry and we didn't know what was going on. Found out it was Infantile Spasms. Which meant in his case that his brain was worse off than we thought.
Lots more testing has came about and he has been diagnosed with the following: Pyloric Stenosis - Surgery on November 25, G tube placement - November 25, HIE, Leringo Molasia, Tracia Molasia, Infantile Spasms, Spastic Quadriplegic Cerebral Palsy, Hypertonia, and Complex Epilepsy.
When he got to Children's they started to run MRI's, CT scans, EEGS and figured out so much. Most of the news I found out on the phone when I went to visit him. Someone told me that he had the severe brain damage than and we didn't know what he would be able to do.
Through it all we started to see Physical Medicine, OT, PT, Neonatal Clinic, ENT, GI and several other people. We went to main campus a lot of other people. We were doing every other week to begin with OT and PT. Neonatal were trying to figure it out and it was at the beginning of 2011 when we got an official diagnosis from Dr. Klumar (we call him our good luck doctor since his name is Karl - Austin is Austin Carl). He diagnosed him with Spastic Quadriplegic Cerebral Palsy. Earlier in the year we started to have more problems with Austin's seizures. Each and every day he'd do this cry and we didn't know what was going on. Found out it was Infantile Spasms. Which meant in his case that his brain was worse off than we thought.
Lots more testing has came about and he has been diagnosed with the following: Pyloric Stenosis - Surgery on November 25, G tube placement - November 25, HIE, Leringo Molasia, Tracia Molasia, Infantile Spasms, Spastic Quadriplegic Cerebral Palsy, Hypertonia, and Complex Epilepsy.
The beginning of his story
Austin Carl Eckstein was born at 40 weeks 6 days he was born 5 pounds 9 ounces and 18 and 3/4 inches long. Such a small baby for baking for so long but he was so precious. I barely remember his cries because it was a c section and for some reason my body always goes into shock so extra drugs were given to me during this period of time. I remember though they brought him to the NICU because he had ate his own poop while in there so of course they had to check him out. I thought how perfect this birth was going to be. My dream was to do a VBAC (vaginal birth after C-Section) which never did happen. Another emergency c section since my body hadn't progressed again. I wonder how mom's had children when their body didn't do what it was suppose to since our bodies are meant to bare children and give birth. Why didn't mine?
I hadn't been able to see him right away because of people coming to visit and I was so tired. I remember when I was about to go visit him my friends would come and than I would be so tired. I would sleep. C sections always take a lot out of you! Finally, I was able to go see him and he was so precious. He was still in an incubator but he looked so perfect. The next day I went to visit him first thing in the morning. It was early I do remember that. They seen me washing my hands and the doctor started to approach his area. I was smiling so hard since I was going to see him but he wasn't smiling. The doctor didn't look happy at all.
'Ms. Dent. We need to have a talk..'
The words started to repeat in my head. I knew something was wrong. He looked perfect, why did they do this, what happened when I wasn't there. Why couldn't I protect my baby.
'Early this morning your little boy had what we think is seizures..'
Seizures? When I thought of seizures I always thought about those adults whose body was shaking so hard. Biting their tongue. Their eyes rolling into the back of their head. All the 'stereo types' for all the seizures that you see on tv and are pictured in videos.
'We are going to transport him to Nationwide Children's Hospital we just wanted to tell you before we were able to. We are not equipped here to be able to handle a child with seizures and make sure that he is diagnosed correctly.'
I started to cry. I couldn't handle this. I wasn't strong enough to see my child go through this. Why did god do this to me? Why me? What did I ever do. Why didn't I have the birth experience that I wanted. Why was that taken away from me as well? But now my baby is sick. My poor precious little boy. My head was racing I started to walk towards my room to go to call my husband and tell him what was going on. My mom was taking Justin (my 21 month old at the time) and Alex was going to drop him off soon to her. I tried to walk the halls without crying, trying to be strong, but I wasn't.
A few nurses and nursing assistants seen me crying and started to try to help me into the room. They knew what was going on but weren't able to tell me but they were prepared for a grieving mother. They held me and allowed me to cry. I cried so hard I didn't know what to think. I finally got calmed enough and called my husband to tell him what was going on. We were still in our newlywed time and we were so blissful and this happened. My husband started to cry on the phone he felt as helpless as me. We had been having problems with stress levels and the problems I was having at the end of my pregnancy. He knew how much I wanted a natural child birth. He called my mom and I called my dad to tell him what was going on.
He told me everything would be OK and I didn't believe it. I never believed when my dad said things could be OK because I didn't think it was realistic. So that day my doctor told me I could go home but how could I go home when I could barely walk. I needed one more day and he kind of looked at me weird. I blame him for some of this to this day.
I hadn't been able to see him right away because of people coming to visit and I was so tired. I remember when I was about to go visit him my friends would come and than I would be so tired. I would sleep. C sections always take a lot out of you! Finally, I was able to go see him and he was so precious. He was still in an incubator but he looked so perfect. The next day I went to visit him first thing in the morning. It was early I do remember that. They seen me washing my hands and the doctor started to approach his area. I was smiling so hard since I was going to see him but he wasn't smiling. The doctor didn't look happy at all.
'Ms. Dent. We need to have a talk..'
The words started to repeat in my head. I knew something was wrong. He looked perfect, why did they do this, what happened when I wasn't there. Why couldn't I protect my baby.
'Early this morning your little boy had what we think is seizures..'
Seizures? When I thought of seizures I always thought about those adults whose body was shaking so hard. Biting their tongue. Their eyes rolling into the back of their head. All the 'stereo types' for all the seizures that you see on tv and are pictured in videos.
'We are going to transport him to Nationwide Children's Hospital we just wanted to tell you before we were able to. We are not equipped here to be able to handle a child with seizures and make sure that he is diagnosed correctly.'
I started to cry. I couldn't handle this. I wasn't strong enough to see my child go through this. Why did god do this to me? Why me? What did I ever do. Why didn't I have the birth experience that I wanted. Why was that taken away from me as well? But now my baby is sick. My poor precious little boy. My head was racing I started to walk towards my room to go to call my husband and tell him what was going on. My mom was taking Justin (my 21 month old at the time) and Alex was going to drop him off soon to her. I tried to walk the halls without crying, trying to be strong, but I wasn't.
A few nurses and nursing assistants seen me crying and started to try to help me into the room. They knew what was going on but weren't able to tell me but they were prepared for a grieving mother. They held me and allowed me to cry. I cried so hard I didn't know what to think. I finally got calmed enough and called my husband to tell him what was going on. We were still in our newlywed time and we were so blissful and this happened. My husband started to cry on the phone he felt as helpless as me. We had been having problems with stress levels and the problems I was having at the end of my pregnancy. He knew how much I wanted a natural child birth. He called my mom and I called my dad to tell him what was going on.
He told me everything would be OK and I didn't believe it. I never believed when my dad said things could be OK because I didn't think it was realistic. So that day my doctor told me I could go home but how could I go home when I could barely walk. I needed one more day and he kind of looked at me weird. I blame him for some of this to this day.
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