Saturday, January 24, 2009

Weekends at KKI

This was a few days ago. You can see how swollen Kenzie's eyes were here. Today I didnt take a picture but it was much worse.

Weekends here are pretty dead. Kenzie gets her 3 feeding sessions but no other therapies. Feeding is not going well and Jordan and I are nervous that maybe shes not old enough to understand the concepts needed to progress. They have divided her feeding sessions in 2. Each sub session are 5 bites. We do 1 sub-session with food on the Nuk and 1 with food on the spoon. She does ok with the Nuk because it pushes the food back on Kenzies tongue and sort of forces her to swallow. She is not doing well at all with the spoon. We don't know if she doesn't understand what to do with the carrots when they are placed with the spoon or she just doesn't want to. It's pretty frustrating because we feel like we are at a standstill.

Medically Kenzie is getting more and more swollen every morning. We met with Kenzies interventional radiologist yesterday (he used to be at Columbia and is now at University of Maryland). He took a look at a picture of her in the morning and agreed she is symptomatic. We are hoping there and no clots and don't expect any. He said his fear always was that the stents would remain open but that where the vein and the start of the stents meet there might be a narrowing. Since this vein is the main vein that leads to Kenzies heart its a bit worrisome. This coming Wednesday morning Dr. Haskal will enter Kenzie through her femoral vein (which is in her groin area), move all the way up part her heart, through the stents, and up her neck. If there is narrowing of the veins he will take a balloon and stretch them. If there are clots (which we really hope not) he will get those too. He uses the analogy of a plumber who needs to go in and clean out her drains. We forgot to ask the real big questions "how often will this narrowing occur?" and "will she need this procedure done everytime?" My guess is that since he had never done this on a baby before... he will say he doesnt know. At the same time Kenzie will either get a "J" tube or a "GJ" tube put in. We are still sort of in discussions with which we will go for. The "J" tube sends all of her formula past her stomach and straight into her small intestines. It should look on the outside much like the button she has now. The "GJ" tube gives us options of where we want to send her formula. Sometimes we can put it into her stomach, sometimes her intestines... The problem with it is that its a bit harder to manage and is much bigger than the button she currently has. His anesthesia team will try and do all of this under a heavy sedation but we are assuming at the end of the day they will wind up intubating and putting her fully under. Hopefully they'll also be able to get all the blood we need at the same time.

So far we've had a great weekend with Uncle Justin, Uncle Jon, Aunt Courtney, Baby BOY Urfrig and daddy. Next Uncle Cousin Markie Boy is coming so this week is going to be so fun! Sorry about all the typos in my posts but I really just don't have the time or energy to proof read before I post.

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