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!!!