5/12/18 - Google?


Yes, sometimes even the smartest people use Google as a reference. Today was an example. We had to make some changes to the PICC (peripherally inserted central catheter) lines in my legs. PICC lines are great for people like me who are getting alot of IV medications. Having a PICC line makes it so I don't have to get poked or have a bunch of random IV lines in my arms and legs and helps keep my infection risk down a little. They are of great convenience for giving me my medicines and taking blood draws, too. Since I've been here, I have had two; one old one from American Family Children's Hospital and one new one from here at CHW. They both needed to be removed today. This is to help with the infection and narrowing down any risks. So, they changed out my right leg PICC and placed a new one that has two tubes. The two tubes will make it so i just have the one PICC line and don't need another one in my other leg again. The bad thing about it, though, is that if I have my leg just right, it may swell up and turn purple from so much fluid I guess. I think that's how they said it? Something like that...so, pray that doesn't happen now.

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Then, they went to change out my left leg PICC line and there was a bizarre style too it that the doctors haven't removed before. Normally, the small plastic part that holds a PICC line secure is sutured to my body so it can't move. This one, however, had no sutures, but still felt sutured in. So, the care team had to Google how to remove it properly without hurting me. Isn't that crazy? Mind you, the Herma Heart Institute where I am at in the Children's Hospital of Wisconsin is the #5 rated best place in the county for me to be...so, they don't take risks that would ever hurt me. It was funny though, that they had to use the internet to reference for the removal of the line. My family says the world has changed a lot in the last ten years...there's proof. Ha


I am really not doing so well these last few days. It's been very hard. This infection is knocking me down. My renal numbers have taken a hit and we struggled to keep them up to a reasonable level today. My body is weak and I feel weak. I'm doing my best to fight though. I always fight. They are worried about me. My doctor, today, even said so right to Dad. It's a very scary thing to be as "sick" as I am and have something like this pop up. When your body is already weak, infections are a serious thing. They are taking all the precautions they can to make sure not to miss anything. Today I had an ultrasound on my head (that is my brain on the screen there). They scanned my head to look for possible bleeding or clots. We will see, but so far it doesn't seem to be alarming or have anything unusual. Same news for my Echocariogram from yesterday. My doctors may want to do another Echocardiogram on me later on if I am stable enough. This would be a different kind of one, though. It would involve a small camera like thing going down my esophagus to see my heart more clearly. I've had one of these done when I was still at AFCH in Madison. It wasn't so bad, but they will still wait. I'm in rough shape. I was medicated and tired today. I looked peek'id and ill, Mom thought. Today's agenda is just to rest now and let the antibiotics try to do their work. 


I need lots and lots of deep and thoughtful prayers tonight. Pray for my health and well-being, for my new heart to come very very soon, for my infection to not effect my already broken heart, for my family and for my someday donor's family, too. I know I ask a lot of you all, but I need you. Especially on days like today. 

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