Wednesday, September 7, 2011
Cami has been hospitalized again since last Thursday night. (actually Friday morning) Thankfully we had a night nurse that night. We knew she was coming down with something because her lungs were not clear. We were trying to wait until my day nurse came on at 8am so that I had her to help with the kids. About 4am I hear the nurse screaming. Camryn's room is at the other end of the house. When I got to her room, she was purple (literally) she was satting at 70. I called 911, Kevin grabbed her oxygen, we started her on o2, kevin went to the top of the property to wait for ems, so that they would not pass our house. Ems got there along with 2 Police officers. We were bagging her when they got there, they couldn't stabilize her. I jumped in the ambulance with her and we were off. She was being bagged all the way. Once we got to Dell ER they had about 30 people waiting for her. There was not enough room for me to be next to her. So, I had to stand by the doors. She was admitted to PICU once she stabilized. They changed her trach to be sure she didn't have a blockage, they don't know what happened. They believe it is a neurological issue. Basically her brain just didn't tell the body to breathe. She is a lot better now, but of course we are still freaked out. She turned 1 year on August 18th. She rolls around the house, she gets physical therapy 2 times a week and is about to start occupational & speech therapy. Will try to update more later.
at 1:33 PM
Thursday, May 19, 2011
I want to thank all of you for all of your support & love. Our life is crazy right now, but it is a good crazy. Cami is flourishing at home. The trach makes it to where you cannot hear her cry of make any noise. I have been praying that she would be able to make noise and guess what??? She coos around her trach- I can actually hear her!! It is truly an answered prayer. I have called her ENT Dr to schedule another procedure to stretch her windpipe so that eventually we can hopefully get the trach out of her. I am waiting now to get the day & time. I will let you all know when it is. As soon as I can learn to upload the video's of her "talking" to me I will put it here for all of you to see. I haven't meant to be a stranger, but we don't have internet at home and my phone doesn't show everything. So, I see today that you all were asking me questions. I did not get them when they were sent. So, I apologize for not getting back to you, I just do not have a way to unless I go to my mom's. I can text though- so I have been able to respond to text mssg's. We are just having a hard time financially right now with everything that has gone on. I had a stroke when Cody was 3 months old. So, I quit working to be a stay at home mom. Like most people we rely on one income. Kevin makes too much for any help financially. I found out that the cloth roll that Camryn needed was a 3 month supply. That is why it was so much. When Cami was released from the hospital I was given 3 company names that I could order her supplies from. Most are covered my medicaid (thank you Jesus) But, as I am finding out- not all is covered. We will get her first SSI check on June 1st. It will be $250.00 a month. That will definitely help with the things that are not covered by medicaid. All in all Cami is doing great though! Her lazy eye is getting a bit stronger as well. We put a patch on her good eye for 2 hours a day. She definitely has bad vision in her lazy eye. When she is wearing her eye patch, she reaches for toys or hands or whatever is there but her depth perception is off. She usually misses the toy. However when she first came home and had the eye patch on she couldn't see anything. she didn't even reach for it. So, now that she is actually able to see something in that eye- she is getting better daily. Cami is such a happy, laid back baby. When we first got her home she didn't want to be touched. She was happy laying in her crib or bouncer or whatever, However once you picked her up she would start crying and not stop until you put her back down. She likes to be held now though :O) Between family and her nurses she gets held quite a bit. Her neck is getting stronger as well! We have been working with her and her physical therapist and it is paying off. (her phys therapist has only had 1 session with her so far) She can turn on both of her sides and has turned completely over by herself 1 time!! She has 2 top teeth coming in, but they are coming in very slowly. Anyway, I have to go Cami is at the house with the nurse and I have to get back there. Cody had an appt this morning so we left to go to Austin. I try not to take Cami to the Doctor's office because I don't want her sick again. Will take more pictures with my phone and send them to my Aunt (Brenda Upton Crowder) and ask her to post them so that you can see her) She weighs about 16 pounds now and is a chunky little girl. I apologize for asking for financial help. You have all helped so much. Someone wanted my mailing address. My address is PO Box 212, Dale, Tx 78616. I read where someone was a little angry with me for asking for help. I hated to do it, but didn't know what else to do. My mom & stepdad are having a hard time financially due to him being laid off. So, they now depend on one income. If they had the money they would help but they do not. Well, have to go. I will read my mssg's when I can come back and use the internet at my mom's. My phone number (if you want to text) is 512-216-0752. I am trying to get it back on now. I haven't had the money to pay the bill. However, it will still receive text mssg's for now) Will update when I can. I did take the number for supplies to get it cheaper, I ordered 2 rolls so that will do 2 months worth. Thank you all again for everything.
at 12:35 PM
Wednesday, April 27, 2011
We had a wonderful Easter this year. It was great to have my kids together and out of the hospital! My 2 nephews, my niece, Cody & Cami were all together for Easter and it was fun for all. Cody even hunted Easter eggs. My mom & step dad bought Easter baskets for the kids and stuffed them full of candy & toys for them. Cami got little rattles, wrist rattles & feet rattles. She loves them all. Once I find my cord for my camera I will be able to upload pictures. I do not know where the cord is currently. I hope all of you had a wonderful Easter this year. Thank you for your continued support of our family. It means so very much to us. Gas is killing us (like it is every one else) we have to drive an hour to go to any of Cami's appointments. An hour there and an hour back and her Houston appointment is a 9 hour round trip. Gas is killing us... I try to make her appointments all on the same day as often as I can so that it will save on gas, but that is not always possible. I pray that gas prices go down at least a dollar a gallon soon. Camryn got approved for medicaid now- so that is helping tremendously. The only problem is that medicaid won't pay for some of her medical supplies. They want her to use certain supplies, but she has a reaction to 2 of them so we have to use 2 other different supplies that do not cause a reaction. The Doctor has contacted medicaid and advised them that Cami has to have these certain supplies due to a reaction to the others, but so far they haven't authorized them. One box of cloth w/ silver in it to help keep her neck dry cost $328.00 for a month's supply. They want us to use nystatin powder, but the powder causes a horrible rash on her skin so we cannot use it. The other thing that they don't want to pay for is just a plastic tubing that goes on her oxygen machine. That piece is just about $10.00 and we can use it for a while- so that one isn't one that we really worry about- the cloth is the killer. Anyway, thank you all for your support- we appreciate it very much. Thank you for all of your prayers for our sweet baby girl as well. Will update again when I can. Will try to find the usb cord for my camera so that I can upload pictures as well.
at 3:05 PM
Friday, April 22, 2011
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
at 3:24 PM
Monday, April 4, 2011
Sorry I haven't updated in so long. I spent quite a few days with Cami at the hospital getting ready to take her home. We left to go home with her this past Tuesday evening. Every thing was going great and we were all so happy to be a family again. Well, I took her to her Pediatrician on Friday because that was a condition of them letting her out- she had to see her pedi by the end of the week. So, Friday I took her in and she was all smiles and doing wonderful. She received her overdue vaccines and about 30 minutes after we left all heck broke loose. She started running a fever, coughing non stop, had a ton of mucus building up. It was awful. I gave her Tylenol and that helped with her fever, but little else. Saturday night I took her to the ER, because she had labored breathing and it was terrifying. As soon as I walked into the ER, the nurse at the desk called to the back and told them to come and get Cami immediately- (they didn't even have her name at this point) Then, they gave her an antibiotic that she had an allergic reaction to- her entire was a deep purplish/ red color. They gave her benadryl to help with that. Anyway, she was hospitalized again. She has been at the hospital since Saturday night and continues to be there. They believe that she has got a virus and then getting vaccinated on top of it was too much for her little body to take. So, we are back in the hospital unfortunately. I have to run. I will try to post more later today or tomorrow.
Please continue to keep Camryn in your prayers.
Love to you all- Kevin, Christy, Cody & Cami
Please continue to keep Camryn in your prayers.
Love to you all- Kevin, Christy, Cody & Cami
at 3:18 PM