The day of the stroke...

As I stood there, looking at my little girl and knowing that life had just gotten a whole lot harder for her... feeling like I had no answers for her questioning face. Feeling scared and alone, I sobbed... At that point, Jilliann began to scream... it was unlike any scream I had ever heard a child make! The only way, that I know how, to decribe it is... as if a woman is about to deliver her child, and is baring down (part scream/part groan) and very loud. I had no clue what she was doing, but I knew it was not right... I started yelling out of the room, saying "come back in, send a doctor, something is wrong". Her scream continued, as medical staff were running in the room and yelling to others to get the doctor. Then her body started jerking all over the place... I then, knew what was happening... Jilly was now having a seizure! At that point, I did not know that seizures are common with strokes. I did not understand why she was having a seizure. As the doctors were running into the room and surrounding her bed, I found myself stuffed in a corner at the head of her bed watching every detail of what was happening. It is a bit blurred, which I am thankful for... because I truely thought I was watching my child's death... a horrible, painful death. I remember looking around the room at one point, and seeing nurses and doctors with tears in their eyes, I thought for sure that there was NO hope.
JILLIANN SEIZED FOR A FULL HOUR... a full tonic clonic seizure... her color was a mottled blue and white, her chest and abdomen sucked in with every breath, that was being assisted with a bag and mask. At first, a doctor was assisting her breathing... then he handed it over to the man who comes to your hospital room each and every night... to make sure you have the correct O2 equipment, and your mask and bag. At that time, I did not know that he was a respiratory therapist, nor did I know that he was the most qualified person to assist Jilliann... I felt very confused about that, and could not understand a doctor allowing someone else to do something so important as to keep my Jilly breathing. The "man who came to help" held the mask tighter on her face, it appeared as if he was smothering her, vs. helping her... I started questioning him... but he was ignoring me (I later realized, that he was concentrating on his job: to keep my Jilly breathing!!! ) Someone had to calm me and say... he knows what he is doing, he is the best! Her little body was lifting off of the bed uncontrollably, I remember a doctor, staring at the monitor and giving out orders for medications. And worst of all, I remember thinking... that it would be better for Jilly to die, than to continue to endure this seizure, that looked like it was going to tear her body in half. After about 45min., I pushed my way out of the corner and collapsed into one of my older son's arms and cryed out "what am I going to do, what am I going to do"??? I just could not imagine going on, with out my Jilliann!!!
Finally, the seizure stopped and the doctors rushed Jillian down to do a MRI of her brain. They wanted to see if she had another stroke, or a brain bleed. At this point she was unconscious, but breathing on her own. It seemed like a eternity, before they returned with the stroke team... to tell me that Jilly had two more stroke areas now. At that point, I believed that Jilliann would lay in a bed, unconscious, the rest of her life. I did not know another child, who had a stroke... it was something that I knew was possible for a "heart child", but I did not know that a child could survive one and ever have any quality of life again. I DID NOT KNOW HOW TO FIGHT THIS FIGHT!!!
I remember, talking to our Stroke Team Neurologist again... at that time, I had questions:
Would Jilliann survive this, would she ever wake up, would she ever do anything ever again, and I remember asking specifically: "How can she ever fight this?... She has been through so much already"! Well I will never forget what I was told... IT IS YOU, THAT NEEDS TO LEARN TO FIGHT THIS, JILLY ALREADY KNOWS HOW TO FIGHT... SHE HAS DONE THAT SINCE THE DAY SHE WAS BORN!!! Then our neurologist, gave me a hug... she probably does not know how much that meant to me... but it did give me hope!

I did not know how to fight something, when Jilly lay there semi-conscious for days... I just kept asking, "when will she wake up" and the answer was always, "her brain needs to rest". I knew they could not answer that question for me, although I had some wonderful talks with the Neurologist, who explained that babies/children's brains are amazing... they are still growing and maturing, and are even capable of compensating for a damaged area... hearing that from the Neurologist, did give me hope!
3 days later, Jilliann began to have seizures again... they were much more mild, but she was on antiseizure meds., more were added... and again, Jilly went down for another MRI of her brain. I feared the worst, that this was just a cycle of strokes until she could no longer live.
BUT... I WAS WRONG!!! Amazingly, with this MRI... we learned that no only did Jilly NOT have another stroke... but, the two areas that showed in the previous MRI, were no longer there. They could not explain it... maybe there was some type of shaddow on the previous scan... but what mattered is: Jilly only had ONE stroke area!!! (one is so much better than two or three, right!!!)
Within a week of the stroke, Jilly started to wake... she was extremely fussy, and did not find comfort in snuggling with me... like we used to do. It broke my heart, to think that maybe Jilly did not remember me! She had moaned and tossed her head back and forth for a week... she had rubbed all the hair off the back of her head (except the hair that grew, just above her neck). But slowly, I saw signs of my old Jilly... then she smiled for her big brother... that was the day I smiled again!!! And from that day on, I will never give up... like I had done! Jilly never gave up, she fought through it all, SHE KNEW HOW TO FIGHT, IT WAS ME THAT NEEDED TO LEARN HOW, AND IT WAS JILLY, WHO TAUGHT ME!

It has been a long journey, fighting back from this stroke... but together, we will do it!
Today, March 1st, 2010 is Jilly's 2yr. anniversary of her " LIVE DAY", the day she survived a stroke. Jilliann Rose, mommy could not be more proud of you! You are my HERO, and you have taught me so much! I love you Jilly, with all of my heart, I am sorry that you have had to endure such difficult things... but, I am here for you... I will fight for you, when you are too weak to fight... I will be there for you always! You are my precious rose, beautiful and amazing!!! Love, Mama

Leading up to the stroke...

I am going to start with the month leading up to Jilly's stroke. Jilly had been hospitalized here in NY for GI issues... it was not uncommon for this to happen, with her severe reflux of both her upper and lower digestive system, and her delayed emptying system. At this point, we were unable to feed her into her g-j tube without severe pain; so she was started on IV fluids and all GI feedings were stopped. This always seemed to do the trick of settling things down, but unfortunatly as a cardiac pt., it is very difficult to place an IV... she had been receiving IV fluids for a few days, but each day required a new IV site. Unfortunatly, it got to a point where no one was able to find a good vein, and throughout a whole day, it was attempted 14 times... even the NICU doc at our local hospital could not get one started (trying even in the skull). After about 5hrs. of NO fluids, Jilly's body starts to react with her heart rate going sky high... it becomes critical at this point. So, it was decided that Jilliann needed to be transported to our cardiac hosp. in PA, CHOP. Unfortunatly, we were in the midst of a blizzard... CHOP has a transport team, that would typically arrive by helicoptor... but it was too windy, so they decided to send a leer jet instead... it would arrive at our local airport, then the transport team got in a ambulance and came to the AOMC to pick Jilly up. Because she was not critical at this point... I was able to fly with them...WOW, what a ride that was!!! It took them 30min. to arrive (going against the wind), and it took us 15min. to fly back to Philly (normally a 4-5hr. drive), and we even got to land sidewards! CHOP'S CICU (cardiac intensive care) nurses were able to get Jilly's IV started... they are the experts afterall, and all was well! The plan was to continue with IV fluids, then slowly start up her GI feeds, at a rate that she could tollerate. These things take a toll on Jilliann in the form of large weight loss, but she is strong, a fighter since birth... and she was well on the road to recovery.
Jilly was originally scheduled for her cleft palate surgery on Feb. 19th 2008, just a few weeks after our arrival at CHOP. It was decided, that she was strong enough to go ahead with the surgery... so we did. All seemed to go well, until she caught a virus (adenovirus) and again, her digestive system acted up... she screamed in pain every time we tried to feed her, so she had to go back on IV fluids. Unfortunatly, with all the previous weight loss and now again only being on IV fluids... she started loosing even more weight, and was becoming weaker and weaker over the next week. It was now time to consider placing a central line, so that she could receive feedings ( a regular IV will not work for this, the veins closer to the surface are smaller and the TPN {total parenteral nutrition} would irritate and burn the veins) so the last day of Feb. 2008, Jilly went into surgery to have a broviac placed into her leg. It was decided by cardiology, that putting a central line in the upper body was too dangerous for the heart... so the leg it was! The surgery went well, and that night the TPN was started by the surgeon.
The next day, was MARCH 1ST 2008... during that day, Jilly's central line came apart at one of its connections and as I picked her up out of bed... I found that her pj's were soaked with blood... I called for a nurse... everything was cleaned up and it was found that there was quite a puddle of blood in her bed also. The nurse hooked her line together and started running it, she also replaced the TPN with a new bag. It is very important that all of the air is extracted out of the line, so not to put air into the body's blood flow... shortly after all this happening that day... JILLY HAD A STROKE!!! We were sitting on the couch together, playing and trying to get Jilly to taste some food... when she started to tip over to one side repeatably... I thought that was odd, but there was nothing else unusual at this point. I decided to pick her up and lay her down, to check and see if anything was bothering her (it appeared like she was purposely leaning to one side) Well, as I layed Jilly down... the left side of her body flopped to the couch, as if she had no control over it. I picked her up and tried again, and the same thing happened. IT WAS AT THAT POINT, THAT I SUSPECTED THAT JILLY HAD, HAD A STOKE! I called the nurse in and said I want a doctor immediatly, I think Jilly had a stroke... before long, there was a team of doctors, examining Jilliann... she was sent down for a CT of the brain, we went back to our room and soon, a new team of doctors arrived "The StrokeTeam" , and they comfirmed what I had suspected... Jilly had a stroke!

I think I will stop here today... it was a devastating day, and just remembering it, is traumatic for me! I had no clue what the near future would bring at that point, it was going to get worse!
But, at that point... I did not think it could get worse, my little girl who had worked so hard to live, to acheive what she had, to this point... and with a bad heart and low muscle tone. It had
not been easy for Jilliann... she had endured 2 open heart surgeries, stomach surgery for a g-tube placement and nissan fundoplication, to help with her reflux. She had been hospitalized
3/4 of her life at that point, due to the heart and stomach issues. And had just recently had her cleft palate surgery... and NOW, SHE HAD A STROKE... I remember laying her down in bed, looking at her helpless little body, seeing her look up at me as if to say... why can't I sit up mommy? I started to cry, and said "my little girl had a stroke", why is life so hard for her, hasn't she had enough troubles and NOW THIS TOO! I felt so sad for her! Before the Stroke Team left, they asked me if I had any questions... at that point, I was numb... I was trying to accept that Jilliann had really had a stroke, it seemed like a bad dream! I said "no, I do not have any questions" and they told me they would be back tomorrow, and that they were available 24/7 if I needed to talk.
That was the end of the day, so I thought........ I CRIED!!!

Looking back, I learned four very important things that day...
1. On a central line, there are connections and ports... the connections should always be connected by what is called a secure loc... it gives extra security, that the line will not come apart... it is crutial that these are used. At the time, CHOP'S policy in the CICU, was to use
these on all central lines... but the step down unit, did not have this policy, nor did the hospital
as a whole! I have since, made sure that the policy is in place for the whole entire hospital... Please make sure it is in your hospital!!!
2. If a central line does come apart, in any way... ask for the surgeon to come inspect it, before it is ran again. The surgeon who placed Jilliann's line, feels that should of been done, but it was not! I did not feel right about the whole thing of just hooking it up and running it, but I did not know anything about central lines so I did not speak up. The surgeon could of done a ultrasound to verify there was no clots or air bubbles in her body before starting it back up.
3. You know your child best, if it does not feel right... speak up! I should of done so, when it came to going ahead with the cleft palate surgery... it was not a critical surgery, it could of been postponed... if your child is not up to par, and a surgery can wait, then wait!
4. Strokes are horrible, none of our kids should experience them... but looking back... it was not the end of her world! Yes, it was a major step backwards and yes it caused a lot of pain and sorrow... but it is survivable, and you can come out of it a better person! I did not know that, that particular day... but I do know that now!!!

Question: How do we know, what is related to what?

So today, is a very special day to me... it is the first time we took our baby girl home... 3yrs. ago! We were petrified of what we were about to learn... we had no clue at this point, that Jilly would be here with us 3 yrs. later... I am so thankful for these past 3yrs. I have learned so much, met so many new friends, and learned how to be strong, thanks to my little hero: Jilliann Rose!

Today, I am thinking about what Noah's mom mentioned... how do we know what is stroke related or CHD related? I find my self, asking our Physical Therapist that question all the time! Jilly also has neuromuscular issues, believed to be congenital; causing her to have hypotonia (low muscle tone) otherwise known as a "floppy baby". The only dx. we have so far is periphreal neuropathy (meaning the nerves coming from her spine to her limbs-arms and legs). So you take a child with a bad heart/and bad nerves/who has had a stroke/ and has spent 1/3 of her life in a hospital, another 1/3 home recovering... that only leaves 1/3 of her life, to work on developing in all areas of life...
So, how do we know???
I think maybe, we can't know... we can guess, asume, and sometimes even hope that a certain symptom is related to a certain cause... because that would be the better choice!
We have been blessed on one issue of stroke.. the" tightness", because of Jilly's "looseness" she was born with... it counteracts the tightness that should of been on the Left side of her body, making that side more like normal. But, the two sides of her body, are not equal... the right side being floppy from low tone. I cannot imagine if the two sides of our body... were so different, and yet our STROKE kids seem to learn to compensate... even to the point where only us and their therapists know the difference! Then there is the heart issue... is the weakness, because of fatigue due to low heart function or poor oxygen levels?
I think that must ALWAYS play some part in any issue. Who does not feel weak, when they are not feeling well!!! Jilly is 2 months away from heart surgery, the Fontan... I hear from more experienced moms, that I will see a difference in strength and endurance... along with better color... so I guess I will soon see, how much the heart... is making a difference!
What do you think???

Today is the first day of my new blog... I intend on learning more about blogging, I must admit, I do not have a clue what I am doing! I hope it will get better as I go, and am open for any suggestions from those who blog or know computers better than myself (that will not be hard to find)! It is very important to me, that there is a place for families to meet... who have experienced the journey, of the combination of :
CHD'S AND STROKES. I currently know, about 10 families, with these circumstances and have recently met some families, who know NO others... I believe we can learn from each other's experiences/journeys... and I hope that anyone interested, will join together! Thank you for visiting JILLY'S CHD/STROKE JOURNEY! Heart and Stroke Hugs!!!

Introduction:

Sadly, children with CHD'S (Congenital Heart Defects) are prone to many complications. One of those complications, is a STROKE.
I hope to find more up to date information on this subject.
HERE IS SOME INFORMATION I FOUND ON STROKES IN CARDIAC KIDS:

John Kylan Lynch, DO, MPH writes:
Cardiac disorders, identified in up to 50% of strokes in
case series, are the most common risk factor for stroke in
children . In the Canadian Pediatric Ischemic Stroke
Registry (CPISR) , cardiac disease was identified in 25%
of children with AIS. Cardiac disorders were the most common
risk factor among children hospitalized with AIS in
the United States from 1979 to 2000 (27% of all cases).
Several cardiac disorders are associated with stroke in children:
congenital heart disease, intracardiac defects, cardiac
procedures, and acquired heart disease. Cardiac disorders
can lead to the development of intracardiac thrombi that
may embolize to the brain or can lead to thrombosis in
cyanotic patients with anemia.
Congenital heart disease
(CHD) was the most common risk factor among children
hospitalized with stroke in California from 1991 to
2000. The incidence of CHD is one per 100 live births.
In the United States, early treatment and improved
surgical techniques for cardiac disorders have increased
survival rates and reduced cerebrovascular events: the
percentage of ischemic strokes due to cardiac disorders
decreased 76% among children hospitalized with ischemic
stroke between the years 1979 and 2000 [8].

http://en.wikipedia.org/wiki/Stroke
A stroke (sometimes called a cerebrovascular accident (CVA)) is the rapidly developing loss of brain function(s) due to disturbance in the blood supply to the brain, caused by a blocked or burst blood vessel. This can be due to ischemia (lack of glucose and oxygen supply) caused by thrombosis or embolism or due to a hemorrhage.[1] As a result, the affected area of the brain is unable to function, leading to inability to move one or more limbs on one side of the body, inability to understand or formulate speech, or inability to see one side of the visual field.[2]

http://pediatrics.aappublications.org/cgi/content/full/122/6/1292
ACCORDING TO THE OFFICIAL JOURNAL OF THE AMERICAN ACADEMY OF PEDIATRICS:
Published online December 1, 2008 PEDIATRICS Vol. 122 No. 6 December 2008, pp. 1292-1298 (doi:10.1542/peds.2007-1459)
ARTICLE
Frequency, Predictors, and Neurologic Outcomes of Vaso-occlusive Strokes Associated With Cardiac Surgery in Children
OBJECTIVE. Our aim was to define the frequency, predictors, and outcomes of stroke associated with cardiac surgery in children with congenital heart disease.
CONCLUSIONS. The frequency of vaso-occlusive stroke in children with congenital heart disease undergoing cardiac surgery was 5.4 cases per 1000 children. Age, duration of bypass, and reoperation may be associated with stroke risk.
The incidence rate of stroke after cardiac surgery among children with CHD was 5.4 cases per 1000 operations. Although this is likely an underestimate, it has important implications. Our study had insufficient power to identify predictors of stroke and potential preventative strategies. Ongoing research should continue toward improvements in intraoperative and postoperative management aimed at preventing neurologic morbidity.