Friday, April 22, 2011

Sweet Cami Updates

Sorry I haven't updated in a while, I know many of you were concerned and I apologize. Camryn was in the hospital for 5 days when we took her back after she was out. After that 5 days we came home and she has been doing wonderful ever since. Unfortunately Cami has a weak immune system and therefore she will come down with something easily. Her Doctors say that over time her immunities will build and she will get sick easy forever (thankfully) Since she has spent about 90% of her lifetime in the hospital she has been in a "sterile" environment and once she came home she wasn't in that environment any longer. When I took her to the Pedi 3 days after coming home, she got sick that day and it was awful. Anyway, that is the past now.... Camryn is growing wonderfully and continues to amaze us daily. We have 3 nurses that come to the house different days & hours to help care for her. It takes 2 people to do her trach care and to bathe her (due to the trach & her fighting you) She has to be suctioned often to clear the mucus out of her trach. She is on the pulse ox machine all the time to monitor her oxygen level and her heart rate. It has to be on her feet in different areas and has to be moved every 12 hours so that the sensor will not burn her skin. The only good place to put it on her, is her feet. We have tried to her hands and toes, but they didn't work out very well. We have to carry 3 machines with us every where we go, so going anywhere is a lot of fun *lol* We have to have her pulse ox machine to monitor her oxygen & heart rate. We have to take her suction machine to suction her trach so that she can breathe easily. We have to take her feeding bag, machine, lines & formula to feed her with her g-tube. We also have to carry oxygen with us every where. I have one oxygen machine in the van that stays there all the time and 2 in her room in the house. Her Pedi is ordering me a portable oxygen machine that will be easier to get around. Cami really loves being at home. She has so many toys and tons of attention from Momma, Daddy, her big brother Cody, 3 nurses and other family members. She loves to play with her hands and feet and will smile very big when her big brother shakes a rattle for her. She can roll on her side by herself and has turned from her back to her belly one time so far. She does not like being on her tummy at all. When she has physical therapy we have to put her on her tummy for a while to try and help her neck muscles become stronger. She gets herself very worked up and sets her pulse ox machine off because her heart rate jumps really high. Her eye sight is very good in one eye, but the other is not very good yet. We put an eye patch on her good eye for 2 hours a day to try and help her strengthen her other eye. I don't know how well it is working but we hope eventually that she will regain sight in her other eye. Her hearing is great though! She loves to listen to music and loves to grab her toys, hands, feet & the mobile in her crib. When she is in her bouncer and laying on one of the little jungle gym things that are on the floor with toys hanging above, she will grab the toys and smile. She makes my heart melt daily :O) Sorry to be rambling, but trying to get so much in one post. Cody is still jealous of her sister and I guess that will continue for a while. He doesn't care about anyone else playing with Sissy, but he doesn't like his Momma playing with Sissy. He is okay for sharing for a couple of minutes, but any more than that and he is trying to push me away from her or, if I am holding her he will try to get in my lap to be in between us. We are working on it but I think it will just take time. I try to explain to him that Sissy needs Mommy's attention and that she is sick bur he is too young to understand. He will be 2 years old on June 26th. Time seems to be flying with my little man *sigh* He hurt himself really bad last night. He was opening the back door and calling our dog J.J. in like he always does, however usually J.J. doesn't come unless I call him. So, I was putting laundry in the washer and Cody was calling J.J. in, well for the first time every J.J. came in with Cody calling him and I wasn't holding the door with Cody. Cody can only hold the door open a tiny bit with her little arm and J.J. is a big dog- so, J.J. came in and it knocked the door out of Cody's hand and Cody fell onto the steps and then off the steps to the ground. It happened in a split second, I couldn't get to him fast enough (even though I was just about 3 feet away) So, he has scratches all over his little face and neck from falling into a bush. He had dirt in his mouth and he has a small cut on his eye lid. I cleaned him up and Cami's nurse was there and she helped me and said that she thought he was okay, but of course she wasn't a Doctor. So, we went to sleep and then this morning he woke up with his eye swollen shut and black & blue. So, I took him to the Doctor and they looked him over and checked for fractures, knots, bumps, etc. Thankfully he didn't have any. Then they put dye in his eye and used a black light to see if he had a scratch or puncture in his eye and he did not (Thank God) So, my little man looks like he has been in an accident. However, he is acting like nothing is wrong at all. Got up this morning and said "hi Pigs" to his guinea pigs, went to Cami's room and said "hi Sissy" then started calling J.J. in the house (I had already put him out) So, he is still his happy little self. Camryn got approved for medicaid (finally) however, medicaid doesn't pay for a lot of her trach care supplies. She has this white cloth that has silver in it that has to go between her skin and her trach ties to keep her little neck dry. Well, medicaid will not cover it. It is like $300 something a box and a box only lasts about a month. She has to have it because the nystatin powder causes a rash reaction. Unfortunately it cost about $85.00 to fill my van up and we go through a tank and a quarter every week taking Cami back and forth to the Doctor and therapy and stuff. (occupational therapy starts coming to the house next week) So, I am going through about $115.00- $135.00 a week in fuel. I hope gas prices start to go down soon because it is killing us. I am so broke that my step dad had to pay the co-pay for Cody's Doctor appt today. I hope you enjoy the pictures- they were taken today. I will try to update again soon. We have to pay a couple hundred dollars to get our internet back on. So, once we have the money we will turn it back on and I can update daily and post a lot of pictures. I know that there was an auction to benefit Cami, so we should get the money soon and that will definitely help our little family. I hope there is enough to get the internet turned on. However, the most important is to get Cami's medical supplies stocked up. Thank you all for your continued support of our family. I can't tell you how much it means to all of us.

Love you all,
Christy, Kevin, Cody & Cami


  1. Thanks so much for the update! So glad you are still home. She is so beautiful!!

  2. Nice to see a update. There's a yahoo group that has medical supplies people sell or give away, you could ask on there and see if anyone has extra supples that they may have. Some Ins pay for stuff and some don't. Here's the link to the group Also there's a HPE yahoo group and a facebook group and some kids have trachs and Iknow I've seen families that had extra supplies. There's stuff out there you just have to keep asking around.
    I know what a pain GAS is, each trip we take into town is $10 and with 4 kids, 1 with speical needs, 2 in sports and a 14 month old, I'm running around all the time. I know Medicad with reinburse you for doc appt but you have to fill out all the paper work, but they don't for theapies or other trips to pick up stuff

  3. Hi Christy! Thanks so much for the update -- I love the photos of Cami. She looks like she is doing so well! I am especially glad to read that her eyesight is recovered in one eye and improving in the other. I am also sorry to read about Cody's accident -- although I hope you got photos of him with his tough looking black eye! You are a super strong mom, and I keep you and your family in my thoughts and prayers. Love from North Carolina. xoxo