Parenting the special needs...

At A Glance...

This is a blog dedicated to my kiddos, Isabell and William. These amazing kids were born extra unique and one of a kind. It's currently unclear what Isabell and William's genetic disposition is- but they have faced many developmental and medical challenges. They each face their different challenges, but they are so much alike. We really think Isabell and William have the same un
diagnosed genetic syndrome. With a combined 24 hospitalizations, and 20 surgical procedures between these Warrior Kiddos, their needs are extra ordinary, and they are spectacular little children. I am the luckiest mom alive, and we are #leonfamilyaz

As I have time, I like to escape to this blog and give my readers a sneak peek into the window of our lives. Happy Reading!



Tuesday, March 13, 2012

All I wanted to do today was go for a walk with my kiddos!

Late yesterday afternoon, William's central line IV, AKA his Broviac would not flush. William's Broviac is a central line IV catheter that is tunneled into his body into a large artery near his heart. William has a broviac because he is a chronically ill kiddo that sometimes needs meds and fluids via IV. Since William has very little, weak and frail veins the typical IV doesn't do the trick, leaving him with several painful infiltrations. The Broviac was placed in June 2011 and has a long-term purpose- meaning that we were able to bring William home from the hospital with this special Broviac central line. We had alot to learn about the broviac. It is a HUGE, I mean HUGE risk for infection. This IV catheter is tunneled near his heart, and if any bacteria gets into the catheter and then into his blood he could suffer from a line infection which can sometimes be fatal. In order to keep the line free from germs, we have to change the sterile protective medical dressing over the area of the catheter that hangs outside of William's body. We have to change the dressing under somewhat sterile conditions. Obviously his crib or blanket that he is laying on for the dressing change isn't sterile, but I have  dressing change kits with a slew of items to be as clean, neat, and sterile as possible for the dressing change. A sterile field to lay down in the area to allow a sterile field for the sterile dressing change, a surgical mask to protect my germs from breathing on the area, sterile gloves, sterile gauze, skin protectant, and chloraseptic cleansing swabs to sterilize and clean the skin and catheter. Among a few other things. The end of the catheter has a changeable cap that has to be changed weekly as well. To change the cap, we have to rub an alcohol swab around the tip for 30 seconds to sterilize the area for the new sterile cap. And then daily, if nothing is going through the line, I just flush the line with 5mL of a solution called heprin. Heprin loosens up the blood and keeps it from clotting the line, but even with proper flushing of the line, it could still get clogged. To flush the line, I open a sterile pre-measured syringe of heprin, wear sterile gloves, rub an alcohol swab on the tip of the cap for 30 seconds, let that dry then twist on the sterile heprin syringe and administer.

So- very unfortunately my little man's broviac wouldn't flush last night, and it had an area at the end that was loose and didn'tlook right. I had been instructed by my medical team that if I ever experience problems with the broviac to go to our Phoenix Children's Hospital Emergency Department and that a special team called IV team would come evaluate it. (PCH IV Team is AWESOME!!) This morning we had a scheduled and much needed appointment with our pulmonologist Dr. Panasar in Gilbert. That appointment went well. The plan after that was to go to the PCH ED, get the broviac figured out and come home to talk a walk in this awesome weather with my sweet kiddos. I dropped off Isaebll to my mom at the hall thinking that I'd be back somewhat shortly to go home. Those plans were crushed with an 8 hour ED visit that lasted from 12Noon to 8pm. When we arrived to the ED, it was not busy at all. (I know what a busy PCH ED looks like) A nurse that was not our assigned nurse came into the room and said she works with broviacs all the time (but was not IV team) and that she needed to put a special med into the line to try and dissolve any blood clots. My nurse Tiffani pointed out the weird loose spot of the broviac and the nurse said if it breaks than IV team can fix it because she was really trying to force the dissolving solution into the line. After Nurse know it all (she had a very Miss know it all attitude) was confident that she got the dissolving solution into the line (which Tiffani was confident that the solution did not go into the line properly) the solution had to sit in the line for 2 hours. So 2 hours came and went and the line still wouldn't flush. So by that point I was demanding for IV team STAT. When IV teams Michelle (Love her) came in she immediately noticed the broken weird looking end piece. She said it was not good because it appeared to be broken and could be a gateway for bacteria and she would recommend putting any solution into the line in case it has bacteria in the broken area. Meanwhile Nurse know it all was really trying to shove the solution through the line with alot of pressure. They should have just called in IV team to begin with (Like I asked them to) to take a look at it. After the discovery of the broken piece, we decided to have the broviac removed. Then there was a hiccup in our plan, because William has had his broviac


Broken end of the broviac that IV Team's Michelle cut off for a temporary repair.

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