What a week!

She really liked her new book from Great Grandma Mary.

Jason and Elise posing for a pic at Ruby Tuesday's last week.

Here she is waving "hi!"

This is a new hiking backpack we got last week. She LOVES it! It seems really comfortable for her, and Jason said it isn't too bad for him either.

Let's just say I'm ready for a boring week. Jason headed off to K.C. Tuesday and I thought I would just cruise through the rest of the week until he returned home this weekend. Well, Elise had other plans. I woke up Wed. am to find her sleeper soaked in her blood. Her central line had split open and was leaking! I started making phone calls immediately to her doctors in STL and her pediatrician here in Spfd, the ER and the PICU. STL said to go to the ER here and they would have someone in the hospital who would look at it and decide if it could be fixed. But everyone I talked to at the hospital here didn't know who that would be. I ended up taking her up to the PICU where the general pediatric surgeon met us and told me due to where it was broken he couldn't fix it, and it would have to be pulled and replaced. So the nurses in the unit, luckily, were able to get and IV in Elise's foot so we could change the Flolan over to a secure line, and I called Mom, and we headed to STL not knowing what was going to happen. We arrived in the ER and a "IV nurse" walks in with a repair kit and fixes the line like it was nothing. She said this happens a lot with these certain lines and that they have to fix them almost on a daily basis. What a relief! Because changing out the line isn't as simple as it sounds. It requires Elise to be admitted to the hospital and have another surgical procedure. But our excitement was quickly shut down when one of the lumens (ports) was clotted. Now stick with me you non-medical people. See, Elise's line has two access ports, or lumens. It has this because her Flolan cannot be mixed with any other solution and can't be stopped. So having the second lumen allows us to draw blood without stopping the Flolan and give a second IV drug if necassary. Like the IV antibiotics she gets when she gets a line infection. Where was I...... oh yeah the clotted lumen. So, they injected her clotted port with a special medicine that breaks up clots. We waited 2 hours to let it work, and then the IV nurse came back to try to access the line but was unable to. So they did a second injection, we waited an additional hour, and again no luck. It's now almost 9pm and they have to decide whether to admit Elise and continue to try and get the clot out. Or send us home and have me attempt to access the line myself. Longer story short, they decided to send us home and have me attempt to access the line. Mom and I finally left STL at 10:30pm arriving in Spfd at 1:30am. WHAT A DAY!! I was never able to access the second port so now she has a "dead port." Which means if/when she gets another line infection she will have to have the whole line pulled and replaced. Nothing like having something to look forward to, huh.

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Other than that, the rest of the week went well. Jason came home Friday afternoon, we had a great weekend, and he left this evening to go back. So like I said at the beginning, I'm hoping for a boring week. I'll post again next Monday. Love you all. Kristin .

Oh, and check out the two videos below!