Happy Monday!

Hey Leon Family fans... wanted to write a quick update. I'm pretty tired, but thought I'd share a few things! We survived our busy week last week- it was exhausting. I'll break it down...

• Monday March 19th, when we met with my kiddos PCP to talk regarding William's non-flushing most likely clotted Broviac central line catheter. We also talked about a few pros/cons of port placement. He agreed we needed to get the non-functioning Broviac out- and that it had to be surgically removed to to just consult with surgery. So, luckily I had the appointment set up for early the next morning. THEN as luck would have it, after a great day, William got a fever in the evening of 103. The fever led us right to PCH ED. at bout 8pm I called my mom and told her I needed help with Isabell, and she dropped everything and came right on down to my house to stay with Isabell. I often wonder what I'd do without my MOM! Anyhow, William and I arrived to PCH ED around 9pm. I was so nervous and scared that the fever was due to a infection from the non functioning Broviac catheter. After labs were drawn, we identified that there was no blood infection and we actually discharged to go home- at 2am!! Long night, and our appointment with our surgeon was at 7:45 the next morning. We got home about 2:30-3am, slept until 6am, and left the house at 7am to get to our appointment at 7:45am.
• Tuesday March 20- appointment with surgery. Our surgeon expressed that the current broviac needed removed and that a port placement is an option, nut automatically an increased risk of infection for William because he has a trach and the port will be up near the trach. He didn't jump to make a plan to remove the broviac which needs to be surgically removed- he ordered an ultrasound of William's veins to make a plan for port placement. I was somewhat frustrated, because at that point I just wanted the Broviac removed!
• Thursday March 22- Our clinic visit with our endocrinologist went well, even though William had to get blood drawn and we were unable to use the darn Broviac, so William had to get poked. He did surprisingly well, and actually giggled through his 'poke'.

As of today, we still have no plan of removing Williams non functioning, at risk for infection, and clotting Broviac. I ended up calling our PCP, and surgeon asking, begging, pleading, and reasoning with them to make a PLAN for removal! It's been over 2 weeks since the broviac has been flushed, and is doing nothing at this point but waiting for a clot, infection or worse. By tomorrow I should hear of a plan.... SHOULD is the key word.

This is very frustrating, and I have gotten very frustrated with my medical team whom I very much trust. I have had to be very persistent on this matter, and I feel like I have done so much already to try and make this "Plan of Removal" happen. I had to go into panic, melt sown, hissy fit mode today to get everyone to Listen To Me!!!

Wish me luck for tomorrow, if a plan isn't made, I am going to blow my top!