Home for Christmas 2010!

Oh my Dear!!! It has been FOREVER since I posted! Sorry! We have been a little..err...busy :) We got home December the 17th! Just in time for Christmas! Thanks to some very special people making some holiday magic we had an AWESOME Christmas!!! With one week left until Christmas, Tim and I had no time for shopping :( We cannot begin to thank those involved for all of the help they gave to our family!! I do not even know WHO to thank for some of the gifts we received! All we can say is that our family had the best Christmas ever, and thank you to everyone that helped make our day so special.

So what happened?? I know I for one am still struggling for answers! Why did Kaitlyn's stomach stop working? Why is her small bowel also not functioning properly? Why was her potassium dropping dangerously low when we were trialling feeds? Why did she require TWO blood transfusions while we were trialling feeds? I could handle the respiratory stuff , but this metabolic/blood/digestive issues are WAY over my head to understand! I have spent countless hours on the internet searching, reading and learning trying to understand what is happening to our daughter. Looking for answers or a solution to her troubles!

So far Home TPN has been fairly "easy". We have to be super careful to keep everything clean! Aseptic techniques and sterile feilds are not hard, you just have to follow the rules EVERY TIME! The time it takes to set up IV feeds is actually less than anything we ever did for enteral feeds!! Crazy but true! The hard part of IV feeds is getting some of the supplies we need covered!! We have an insane medical system that pays for everything our child needs when she is hospitalized, but when we want to bring her home those same supplies are not covered!?!?! Some of the medications we have Kaitlyn on work better for her when given through her IV! But those medications are expensive and are not covered when we bring our daughter home. We found aid through Palliative Care from our local Children's Hospital to pay for our IV meds. But this doesn't cover the cost o some of the supplies we need to deliver these meds. This is NO fault of the Palliative service!!! We are extremely greatful for the help they have offered freely to our family! The cost of the supplies AND meds we need, I feel, should be covered. We are doing the "system" a favour by keeping our daughter in our own home. We save the government thousands of dollars per DAY by having Kaitlyn at home! You'd think the least they could do is cover meds and supplies needed to keep her at home! OK that's my rant for the day ;)

We are doing well since coming home. Everyone has adjusted to the new routine really well. Tim is still able to get out to the firehall training sessions every week. The boys are happy and Kaitlyn is thrilled to be home! She thrives in her home setting! She has discovered some new words and is coming out with more every week. She still does not communicate in sentences, but her vocabulary is growing and her responses are becoming more predictable. We have been able to discover that she knows most of her colors, now that she is actually saying the words :) We use a lot of eye gaze to find out what Kaitlyn knows, but unfortunately with eye gaze if she doesn't cooperate then the activity is useless :)

We have had some troublesome blood labs since coming home. Some of Kaitlyn's bi-weekly blood-work has been a little off. Her GI doctors and her pediatrician have been on top of it though and we are hopeful that the changes they have made will help. The other issue unrelated to TPN is that Kaitlyn is anemic again. She is not iron deficient though, so we are not too sure what is going on.

Hopefully next week's blood labs will look better so we can get our girl stabilized and keep her home for a VERY long time :)