Tuesday, November 3, 2009

One mistake or moment can change the rest of your life forever!

This picture was taken of Gavin shortly before he suffered his stroke. He was about 7 months old. Wasn't he cute?!

He was doing quite well in this picture. He was still in the hospital, after having been for almost 4 months. He had gone through 3 surgeries and almost 2 1/2 months of being intubated and on a ventilator. He was finally making great improvement and was working hard on getting to come home again.

He was then transfered to another hospital, that was closer to our home. This is where mistakes were made and Gavin suffered his brain injury. One mistake and a matter of a couple of days changed his and our life forever.

About a month ago I totally broke down thinking about this time in Gavin's life. I do this a couple of times a year. Usually I'm in the shower, alone with my thoughts and the dam breaks loose. This time I was reading an article in the October 2009 Good Housekeeping magazine. There was a story in it called, Life after Josie, which was about a toddler who got burned in the bath tub and ended up in the hospital with 1st and 2nd degree burns. Her parents were told that she was going to be fine, but that they needed to keep her hydrated and watch for infection. She was still hospitalized while she healed from her burns. She was in the hospital for a couple of weeks, healing and getting narcotics for the pain. She was doing great and they were planning on sending her home again soon.

This is when things went down hill fast! While reading this story, this is where I lost it and started sobbing. I couldn't believe how similiar our very different stories started to become! This is where I could put myself in this mother's shoes and ached for what she had to go through.

Her daughter started to act thirsty all of the time. She would cry for something to drink, but was told that she could only have ice chips. She would suck on her washcloth during bath time. She was getting dehydrated! Her mother asked for IV fluids to be given to her daughter, but she was told that her daughter was just fine. She was NOT fine!

The next day she became unresponsive and her mom was very worried. The mother was told that she was fine and that it probably had to do with weaning from the narcotics. So, the doctor discontinued the narcotics. Later that day, the order to not give narcotics anymore was changed, and a nurse gave her methadone. Minutes later Josie went into cardiac arrest. She went from almost going home, to on a breathing tube and tons of machines! The doctors thought she had an infection, but her mother knew that it was because her daughter was dehydrated and given the narcotics. This proved to be the case!

Josie's organs began to shut down and she was pronounced brain dead. Josie died from this mistake! They later learned that Josie did die from dehydration.

Reading this story made me so sad for this mother! It also made me wonder why Gavin is still alive today?

Gavin's story started out very differently. He was born with a heart defect and this is how his hospitalization began. Josie suffered burns and she died from complications that arose from mistakes that were made!

Although their stories started out very differently, the ending was almost the same! Gavin almost died from the very same thing! Gavin was so much more sick than this little girl to begin with and yet very similiar mistakes were made, and Josie died and Gavin lived. WHY???

When I think back to those horrendous few days in the hospital, I almost get physically sick! It's like a bad movie playing in my head. Gavin went through SO much, things that could have been prevented! I remember having to watch Gavin suck frantically on his fists trying to get some fluid from them. I remember watching him shake and shake and shake! I remember him continually fussing and trying to tell us that something was wrong! I remember him and I being awake for a couple of days straight and then he finally fell asleep. In the end, this sleep was not a good thing, it was because he had suffered his stroke!

The thing is, I KNEW that something was wrong before this! I told doctors and nurses that something was wrong! I told them that I thought that he was dehydrated and that he needed IV fluids! The doctors kept telling me that they wanted him to be dehydrated, because his lungs needed to get clear. I told them that I understood that, but "What about the rest of his body?!"

Of course, I was just his mom! The doctors did not take into account the fact that Gavin had C-Diff and was constantly having bouts of diarrhea. They didn't take into account the VERY HIGH doses of dieuretics that he was getting. They didn't take into account the fact that Gavin's mom might actually know her son better than all of them put together! The doctors did finally give Gavin an IV, but it was too late!

Gavin suffered his brain injury and it's all because he was dehydrated! Gavin ended up back on the ventilator and on tons of machimes. Gavin's organs even began to shut down. His kidneys and liver weren't working properly and he was a mess! Shortly after this is when Gavin began having seizures as well!

I thought that he was going to die. Doctors and nurses thought that he was going to die. I knew that it was from dehydration, but no one wanted to commit to this reality.

In Josie's story, she died and doctor's told her parents that "this shouldn't have happened and if we had listened to you, her mother, she would be alive today." This is what the mother had been waiting to hear. The hospital offered this family a settlement for their loss. The family didn't want this money, but they took it and started a foundation with the money. They wanted their daughter's death to have good come from it.

Obviously, Gavin did not die from the mistake that was made. But, his life and our family's life has changed forever because of this mistake! Gavin could be sitting up, crawling and even walking today if things had been done differently. This is a hard pill to swallow everyday!

The Josie King Foundation created ways for hospitals to not make similiar mistakes, mistakes that took their daughter's life. They started something called, "a rapid-response team." This is a team of doctors and nurses that are on call to come investigate a patient's condition. This team can be called by a family member, who may think that something is not right with their family member or they can be called by a nurse who is concerned with the condition of one of their patients. The number is given to the patient or family when they are admitted into the hospital. This team will come and check the patient thoroughly and make sure that things are not being missed.

Man! I wish that the hospital that Gavin was in had had this team on board for me and him! I surely would have called this number and insisted that his care be investigated further!

This type of thing could have saved Josie's life and it could have prevented Gavin's stroke! I have been told that the "ball was dropped in Gavin's care" and that things should have been done differently. This doesn't change the fact that Gavin will always be like an infant. And, it sure does leave this Momma feeling guilty every day of her life, thinking that things could have be very different today if I had just fought harder for my son!

After reading this article and crying, I got on the phone with our hospital and talked with the patient relations department. I asked if this type of response team was a part of their hospital today. I was told that it was recently added to their team. While this made me happy to hear, it also made me wish that it had been done sooner for Gavin and others like him! There are statistics that say that between "44,000 and 98,000 people die each year from medical errors." The article said that it is "one of our country's top killers and that 70 percent of all unexplained medical events resulting in death or serious injury occur because of a breakdown in communication, as in Josie's case" and as in Gavin's case.

I have to live with this mistake forever. I wonder why Gavin is still alive today and Josie is not? I feel the need to make good come from this mistake. So, please inquire with the hospitals in your area, about whether or not "rapid-response teams" are set up in your hospital! This could make all the difference for you or someone that you love!

Gavin is here today for some reason and I am so thankful that he is! His life may be very different than it could have been, but it's still a full life and he brings so much fullness to others that are blessed to know him! God has a plan for Gavin and a plan for all of us! Be ready to fulfill God's plan for you each and every day! And, be thankful for the abilities that He has given to you!

"Bear one another's burdens, and so fulfill the law of Christ." Galations 6:2


Heather said...

Thank you for sharing this.For so many reasons.For opening your heart and being so honest with something so difficult to revisit.As for the "Rapid Response Team" ... I saw it inacted many,many times over the last year and now,because of the life and death of a precious little girl,I know way it is in place.

Zoey's stroke is the one thing that weighs a bit heavy on me as well.Because of it she began her seizure disorder and a whole host of other things left in it's wake.Her's was in-utero.Not a lot we could do about it really.Although,on the Monday before she was born she,or rather I had an ultrasound of her heart,checking on her defect and her head ... nothing was wrong .. perfect.The next day I had a non-stress test.Didn't go great.Was there for 2 hours and finally my doctor said a few movements made him feel comfortable enough to send me home.In hindsight she WAS letting us know something was wrong.The next day she was really squiggly and acting strange in my belly.I called Mark and was concerned but it eventually passed.Two days later I went into labor.She came with all her issues and the stroke was discovered.They said due to the look of the cell death,the stroke happened within 3 or 4 days and we know her arteries were fine on Monday.Broke my heart.Still does on some days.I often go over that week in my mind and mull over the what if's ...doesn't change a thing but we all do it.Normal ...and ,the shower is my place as well.Always has been.

Thanks again for sharing.Gavin looks so darling.Such a big guy he is getting to be.He was certainly a little cutie ... still is!

ANewKindOfPerfect said...

Our hospital has a rapid response team, and we have actually used it once. I am glad it's there, but am so sad to read the story behind it. :(

My heart is heavy with yours right now. That precious boy of yours .. all these amazing kids. They just WOW me!

Alicia said...

Wow Alicia, thank you so much for sharing this. I know it has got to be heart wrenching for you. You are the best Mama Gavin could have ever been blessed with. You do EVERYTHING for that little man! Your love for him (and the rest of your family) is tangible.

I can't find the right words to say to address what you wrote here today except, Thank You for pouring out your heart like you do. I will be checking with our hospitals to see if they have rapid response teams set up.


Becky said...

Wow! What a tender post. I am sorry for what you have experienced. I know lots of parents that feel like mistakes were made. It IS sad that this program came about from a death of an innocent child and a mother that no one listened to. Makes my heart hurt. You have a beautiful boy regardless, and thank you for sharing his story.

Lacey said...

you know that I already feel our stories are eerily similar. We are soul sisters I think. Jax brain injury was from the same thing, but his happened so fast because he had a fever and was burning through glucose at a crazy rate, and they stopped all of his IV fluid because he was bleeding out of all of his IV's. He was getting nothing going in and a lot going out. Thats when the lab called and said his glucose was 17, I know it got lower than that just for the shear time it takes to send these tests. Thats what I'm sure happened to Gavin and Josie. Dehydration makes your glucose drop to dangerous levels, and thats what causes lack of blood to the brain. Jax was already intubated so we didn't see the symptoms, it all happened in a matter of a couple of hours. I sometimes wonder if we should have taken his off life support then, but I look at his sweet face and know that if we could control his siezures he would develop so much more.

Cammie Heflin said...

Now I'm bawling! I can't imagine what you and Josie's families are feeling. Addy has been dehydrated several times but fortunately she was always given and IV and was tolerating feeds before the IVs were removed. Gavin is here for a reason and it's to be loved unconditionally, which he has down to a fine art! Love you Gavin!

Tiffany said...

Wow, what a story. Our story is quite different and yet reading the story you shared it brought back all those memories I have of our horrible days in the NICU. Even though it happened quite a long time ago it is still and probably always will be vivid in my mind.

It is neat to me to see how God has used this family to help others. He has used Josie's life as short as it may have been to impact so many others lives. I pray that having Isabelle in our life will do the same some how some day. God has a plan for these little people and for the families that have been blessed with them. As sad as the stories are, it is also good to see the good things that can be taking effect because of them.

Thanks for sharing your story.

Tiffany said...

Wow, what a story. Our story is quite different and yet reading the story you shared it brought back all those memories I have of our horrible days in the NICU. Even though it happened quite a long time ago it is still and probably always will be vivid in my mind.

It is neat to me to see how God has used this family to help others. He has used Josie's life as short as it may have been to impact so many others lives. I pray that having Isabelle in our life will do the same some how some day. God has a plan for these little people and for the families that have been blessed with them. As sad as the stories are, it is also good to see the good things that can be taking effect because of them.

Thanks for sharing your story.

Annette Gysen said...

It's such a hard thing to grapple with. My sister died in 1990 from complications from injuries in a car accident. While her injuries were very serious, we learned that one "mistake" in particular led to some serious complications. Even today I try not to think about it because it makes me angry. I don't know what I'd do with it if I were confronted with it every day, as you are. It sounds cliche, but I guess all we can do is trust God's plan. I don't know any other answers. But it's great that you're using that to make things better for others.

Amy said...

What an amazing post, Alicia! I was crying myself, thinking back on that time and wishing we could have done something different. I cannot even fathom what you must go through each day, recalling those memories. You do such a wonderful job staying on track with going forward and not dwelling on that past, though -- this post is a perfect example of that. Never stop being a voice for others, in the name of Gavin and for other like Josie who weren't quite as fortunate.

As I've said before, I'd love to submit your name to the Governor as a parent rep on a disability board some day....keep it in mind! It's these kinds of messages that we need, and you would do such an amazing job trying to spread them to others! (((hugs)))

Heather said...

Heather again ... you know I went to bed last night and said to my husband,"I hope I didn't forget any of our friends who are or were or could be again,suffering from seizures"And here is Gavin,sweet guy,who has been through SO much as well ... Sorry my sweet cyberfriend.You have been so very supportive and prayerful .. forgive me??

Inspired said...

No words. I just can't wrap my brain around it. You, my sweet girl, are simply amazing! Sending lots of love and hugs!

*HoLLi jO* said...

I just stumbled upon your blog... I am actually new to the blogging world, but I have to say that I really enjoy your writings.... I have a son who suffered a stroke as well. He was born at 27 weeks gestation, and had severe brain bleed, and resulted in the stroke, and he now has Cerebral Palsy. Luke (My miracle) :) has been in the hospital NUMBEROUS times, and I have had to be right down nasty with the doctors to listen to ME.... I completely and totally understand where you are coming from.. of all ppl we do know whats wrong, and thats why God made us special... we are their mothers. I have actually talked to my hospital about something that I could do. (my son was in the ER 24 times in 8 months due to the same thing, and every time I would go in, I would tell him what he needed, and they would do something different, we actually ended up almost losing him due to it. I just wanted to say thank you for your blog post, and I hope everything goes well with Gavin, special needs kiddos are awesome, such blessings!! :)