Saturday, March 12, 2011

Camryn's Auction & Surgery

Camryn's auction is now live. All the proceeds go towards Cami's medical expenses. Please visit the auction and bid. Items are still being accepted to auction as well. The link is!/pages/Offical-CAMI-PAGE/158650890856920Camryn is going back into surgery next Tuesday. The surgery is to enlarge her windpipe opening. She has had 2 of these surgeries already. This will be #3. The hope is that eventually we will be able to remove the trach and Cami will be able to breathe without the trach. I meet with the g-tube training lady on Monday so that I can learn how to feed her using the g-tube. I have already learned how to clean the area , but now have to learn everything else. Once we are done with all of the training for everything we hope to be able to bring her home. We have to learn trach care (which has to be done 2 times a day) trach changing (has to be done 1 time a week) g-tube care (daily), trach cpr and the what to do if??? There is a ton of stuff that we have to learn. We are both done with "trach care" training. We are still learning trach change. We are done with g-tube cleaning, but still have to learn everything else about it. Kevin has changed her trach 3 times and I have changed it 2 times. It takes 2-3 people to do trach care and trach change. You cannot do it on your own. (especially with Sissy, she is a strong little girl) We are supposed to learn trach cpr this coming week, that is a 2-3 course process. They want to be sure that we know what we are doing and I appreciate it very much. Our monthly cost for all of her supplies is around $300.00. That is if the insurance will cover her formula. If they will not (we do not know yet) it will go up quite a bit more. We are hoping that wic will cover it because she did qualify for wic. Her insurance is paying several thousand dollars a month for the equipment, nursing care, oxygen, etc. So, $300.00 is not bad- it is much preferable to thousands of dollars (we could not afford that at all) I met with the home health company yesterday and we went over our preferences for her care. I get a nurse 12 hours a day- I can choose night or day or a combo of both for example 5pm-5am. That way I have "day" help and "night" help. I told them that at this point I am not sure when I will need them so we will play it by ear. I learned about all of her equipment that we will have to take home with us as well and I admit it was a bit over whelming. I am not sure what our part of the equipment rental will be a month. At this point we desperately need her to be on SSI so that it will help cover our monthly expenses for her equipment and supplies. We desperately want her home, but I am getting a little nervous because of all the care that she requires. Most of our house has wood flooring, but the bedrooms have carpet. The Doctor said that it is preferable not to have carpet because carpet can hold a lot of dust, hair, etc even with daily vaccuuming. So, we are working on trying to get wood flooring in Cami's room. Laminate wood flooring is not that expensive and Kevin can put it in. Lumber liquidators has the cheapest at .79 cents a foot. It isn't as nice as the rest of the house, but it will work and be better for Cami. I am using my niece's computer and cannot upload pictures because I do not have my usb cord. Her computer isn't one that you can just put your memory card in. So, I will see if the Ronald Mcdonald house will allow me to use their internet for a bit and I can upload more pictures. Cami is smiling a lot more these days- she is just too cute for words. I love her so much and I am so happy to be her mom. I feel blessed daily that God gave her to me and not anyone else. I am thankful to all of you who have gathered around us and prayed for her. Please share her auction link with anyone you know. I would appreciate it very much. With the recent gas price increase- it is killing us to drive back and forth every day to see Sissy. I am hoping that we can stay at the RMH again starting Monday if they have an available room. That way it will not cost us $50 a day to go see her. Well, will go for now

1 comment:

  1. I found your blog via facebook and after reading your posts and everything that you have been through really makes me thankful for everything that I have. I will add your family to my prayers. I can only imagine the stress of traveling back and forth to see your child. May God bless you! I am going to make a donation to help bring cami home! <3 Sarah