Tuesday, March 22, 2011

Sorry So Long Without A Post

Cami is doing okay. We still hope to bring her home at the end of the month. We have an all day training on Thursday for trach cpr and more equipment training. it is going to be hard for sure. Cami is great though and I am happy about that. Cody has a double ear infection and allergies and a virus, so I am getting no sleep lately since he is up all hours of the night. His Pedi put him on amoxicillian and my Dr put me on it as well since I am getting the same thing. I just hope that Cami doesn't get it. I wear a mask when I am around her and the nurses think that is safe- I am not sure about that. This weekend Kevin and I have to take turns and do a 24 hour shift taking care of Camryn by ourself. Without any nurses help at all. It is going to be hard to say the least but I hope we can do it. If we fail, we can't take her home until we pass it. Anyway, I want to thank all of you for your continued support for our family. You have really saved us in so many ways. I worry about her ongoing medical bills though. I worry about them all the time. I am so very happy that people are doing auctions to help us with the ongoing medical expenses. Thank you all for your continued support. You are truly a blessing to us. I hope you enjoy the pictures that were taken in the last few days.

Thursday, March 17, 2011

To Clarify

No one has accused us of not being real. It was just brought up to me that a lot of the mom's really didn't know if they should continue trusting every story. Honestly, no you should not trust every story. Some people are out there to scam you. Is it sick? Yes, it is. However, it is done. If the person cannot produce many pictures of their child- they most likely are not telling the truth. Anyone, (especially with a sick child) will take tons of photo's because you never know what may happen. I have over 2,000 pictures of Cami and about as many (if not more) of Cody. I have had losses in the past. I KNOW that every day is not a guarantee. If a child is hospitalized, you will definitely see hospital equipment in at least some of the pictures. If all of their pictures are shown in the same outfit- another red flag.

So, definitely do not fall into a trap knowingly. However, don't exclude yourself either. Before you send money be SURE that the story is true.

Wednesday, March 16, 2011

Are We Real???

Unfortunately there was someone who *allegedly* used sickness & death of a baby to gain sympathy, friendship and maybe financial gain. So, now the people who were taken in by this person are asking about all the rest of us who have legitimate problems. Are we for "real"?? Well, anyone who really needs to know if we are for "real" can call the RMH in Austin 512-472-9844. Our names are Kevin & Christy Faglie- we are currently in Rm 26. Unfortunately, we have been here since shortly after Cami's birth and got a "leave" of a few weeks and have been back since 12/6/10 except for a 1 week leave. I would not ever make up a child's health issue and even in my wildest dreams could not have made up half the stuff that has happened to my poor daughter since her birth almost 7 months ago. If you are my facebook friend, you can find my family and contact them as well. Any of them. I would hate to think that you would think of us as "liars", but I understand since you trusted someone else who turned out to be.

Enough of that. Cami is doing great today, we had a "care conference" with 2 of her Doctors, 2 of her nurses and 2 social workers on a plan to get Cami home. We are aiming to have her home by the end of the month. We have trach cpr and more equipment training next Thursday (not tomorrow) then we have to care for her by ourselves for 24 hours each and pass that before she can go home. So, keep us in your thoughts & prayers.

Tuesday, March 15, 2011

Pictures From Today

Cody was in the middle of saying "Hi Sissy" He sounds so cute when he says it.
He is so gentle with his Sissy

Have I mentioned how much I love this kid???

My Beautiful Baby Girl. Half of my reason for living. The other half pictured above :)

Unfortunately, Cody and Cami have never had a lot of time together. So, as they both age it is important to me that they be "close" I want Cody to love his little sister through thick and thin. I want her to adore her older brother as well. It is hard to see one child have to work so hard for everything, but I know that she is mine for a reason and I will do what I have to do to care for her. Today after surgery, she slept a long time. My mom came and got Cody this afternoon because I have a Dentist appointment in the morning. I am blessed beyond words that my mom and step dad have been able to care for Cody as much as they have. He is enjoying the visit with his cousin, as my mom and step dad have his cousin there as well. Thank you all for your continued support and prayers. When I feel like giving up, I think about everyone who has been keeping us afloat with prayers and finances for so long now. I wish that I could visit with each and every one of you. Maybe one day I will. We are hoping to have Cami home by the end of the month. I will go into specifics in another post. We have paid for our part of all of her equipment. ($2068.00) Our monthly out of pocket cost will be anywhere from $384.00 - $567.00. They are not sure of the specifics quite yet because the number depends greatly on just how much special formula she is taking in and how much oxygen, etc she goes through. They say we should know the "average" by the time she is home about 3 months. I am hoping that SSI comes through for us soon, because I do not see how in the heck we are going to pay all of this out of pocket. Camryn was born with 3 birth defects, premature (born at 31 wks), now has a trach and a gtube and requires oxygen a lot of the time. So, I believe she should qualify with all of the above. Anyway, it is almost 2am and I am exhausted- so I hope you all enjoy the pictures.

Monday, March 14, 2011

Back At RMH

Well, we checked back in at the Ronald McDonald House today. We got the room that we stayed in when Sissy was born and in the NICU. I much prefer this room to our last room. So, change is a good thing. Sissy is doing great- she is set to go to surgery in the morning. I was told to be there at 7am, but they still do not know what time her surgery time is as of yet. They are going to stretch her windpipe, look on the inside of her tummy with a camera and remove her broviac (sp?) tube that was surgically placed in her chest a few surgeries ago. I have paid for all of her equipment now (Thanks to all of you) and now just have to worry about her month to month costs. I took her g-tube care, cleaning and everything else course today. It is pretty straight forward- so no worries there. Here are pictures from the last few days. I hope you enjoy. Will write again later- have to get Cody fed and go and visit Cami again.

Saturday, March 12, 2011

Camryn's Auction

Please be sure to visit Cami's auction page at http://www.facebook.com/pages/Offical-CAMI-PAGE/158650890856920

All proceeds are going to help with Cami's ongoing medical bills. Feel free to post the link on your own blog page or facebook account. We truly appreciate it.

With any luck Cami may be out of the hospital by the end of the month!! If we can get all of her supplies and training finished she will be home where she belongs!!!

Keep my sweet girl in your prayers- prayers are what is keeping us going.

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 http://www.facebook.com/#!/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

Wednesday, March 9, 2011

Hello All

Hello, it has been a couple of days since I Have been online. I want to say "Thank You" to all of you for your prayers and the donations!!! I have paid one medical supply company $736.00 and they delivered 6 boxes so far. I have to pay another what I owe them and they will send more supplies. I want to thank all of you for all that you have done for our family. We would not be able to do it without you all.

There is an auction that is going on to benefit Cami. The link is http://www.facebook.com/#!/pages/Offical-CAMI-PAGE/158650890856920

Please help support Camryn by donating to the auction or bidding in it- Thank you!!!

I have received numerous emails about Medicaid & SSI for my daughter. Before Camryn left the NICU, the hospital applied for SSI benefits for Cami due to her special needs. We had one interview in November and have not heard from them since. When I did contact them, I was told that they are still in the middle of the process. So, it is not an overnight thing. Regarding Medicaid- even when your child has special needs- they take your income into consideration- therefore- Cami is not eligible. So, though I know you are trying to be helpful by bringing up SSI & Medicaid- believe me, we have tried that avenue.

Camryn's Doctors believe that she should have certain equipment that the insurance does not think is a "necessity". Therefore, we are in the process of trying to get her insurance to cover more, but in the meantime, we are responsible and do not want to let Cami continue to sit in the hospital any longer than she has to. Sorry to cut this short, but it is my "class" time again with Cami so I have to go. My camera is still packed, so no new pictures yet, but will try to get that unpacked tonight. I paid the deposit on our home phone- so I am hoping that it will be on shortly. They have to put in some new lines where they were cut before, so I don't know how long it will be.

Thank you all so much for everything. We love all of you

Christy, Kevin, Cody & Camryn

Sunday, March 6, 2011

Heading Out

We are packed and heading out. Both of our vehicles are stuffed to the gills with all of our stuff, but we are making it. I am going to use donated money to get our home phone turned back on. I will call them tomorrow and see when they can have it on for us. I will try to get Internet back as well. My main focus though is on the phone because the hospital can not contact us on our cell phones because we do not get a signal at home. Also, once Cami does come home that is our lifeline for her. We are still learning trach cleaning & changing and now g-tube cleaning and care as well. Once all the training is done with we should be able to take Cami home. We are going home today to start cleaning and dusting the house as it has sat empty since December 6th when Cami went into the hospital. So, though no one has been home to "dirty" it, it needs to be aired and freshened up. Also, we now have mice in our house. Kevin put out poison the other day, so I am hoping that they are no longer there. We will be bleaching the house down to clean up after them and running all the dishes through the dishwasher to be sure that everything is clean. We live in the country and unfortunately mice do come in your house if you do not have a cat and we no longer have a cat. (he passed away a while back) I will miss chatting with all of you, but as soon as I can I will have home phone service again and hoping to get internet again as well. Cami is doing great and I hope to upload pictures tonight from today (if I am able to use my mom's internet) It is going to cost us a pretty penny to go to see Cami every day, but we have to do it. I can not let her be neglected as she is when I am not there to advocate for her. So, once our classes/training for her trach & g-tube are done and we are able to pay for her equipment- we will be able to take her home. Yes, I said it.....*HOME* She will have nursing 12 hours a day, plus therapists coming to the house daily to work with her. So, my life will be pretty crazy for a while but in all honesty- it will be a "good" crazy and not a hospital crazy. I am told that I can choose a day nurse or a night nurse for the 12 hours. I guess I will have to wait and see what feels good when the time comes. My son will be happy to be home though! He will be happy to see the dogs and play in our house & yard. My heart is torn in two- as it usually is. Us going home is good for Cody but not for Cami. Us staying at the RMH is good for Cami but bad for Cody. So, it is a tight rope that I walk. If I get excited to go home- I feel ashamed of myself because Cami won't be with us. If I want to stay at the RMH, I feel ashamed because I know it isn't the best place for my son. So, I am just confused by it all. We should be done with all of our *care* classes with Cami in the next couple of weeks, but then it will be time to take her back into surgery to stretch her wind pipe again. So, if all goes okay we may have our baby girl home by April 1st. (if classes are done, CPR training is completed and we pass and we of course pay our portion of the equipment) So, please keep us in your prayers and thank you all for prayers and donations.

Kevin, Christy, Cody & Camryn

Packing & Heading Home

I spoke with Kevin about staying in a motel/hotel around here versus going home if someone could help pay for it. He would rather we go home and try to get the house ready for Cami to come home. It has pretty much been abandoned since 12/6/10. I read the comment about people willing to help with a hotel stay. If you could instead put it in the chip in on my blog or mail it to me that would help. I coud use some of the money to get our home phone turned on and other to visit Cami daily and the medical expenses to bring her home. If mailing, you will have to mail to our po box because we are leaving the RMH today.

My address is
Christy Faglie
PO Box 212
Dale, Tx 78616

My cell number is 512-216-0752

I have to go now. We have to pack. I will check internet again before we leave here.

Saturday, March 5, 2011

Pictures & Goodbye

Kevin and I spent quite a few hours with our sweet girl today. We did her trach care and with tears rolling down our faces told her that we may not be able to come and see her every day for a while. We explained that gas is $3.40 a gallon and that with a 100 plus mile round trip, that it would be very expensive to come and see her every day. I told her that I would be sure that I at least come every other day for sure. I told her that she will always be on Mommy's mind. She just looked at me and gave me a crooked little grin. She melts my heart. I called around today and found a cheap motel for $49.99 a night plus taxes. However, it looks like it charges by the hour if you know what I mean. That is the least expensive one that I found. There are weekly rentals as well and they are nicer and are about $250.00 a week. I guess we are just going to go home and try to come see her daily or as often as we can. It is going to kill me to be away from her. There just isn't anywhere that I can stay with my husband and Cody that is really close to the hospital. A friend from high school offered to let me & Cody stay with her for a few days, but Kevin doesn't like that idea- he wants all of us together. Kellie (my friend) doesn't live very far from the hospital. Kevin is stressed out and is taking it out on me. He acts like us having to leave is my fault or something. I can't stay at my dad's because he and my sister and brother in law all live in my dad's house and they all chain smoke. I cannot stand the smell of smoke and will not allow Cody around it. My brother and sister in law have a very large 2 story home, but they think that Cody is too spoiled and I am not going to let anyone yell at my child for being a child. My mom & step dad live out near where I live so that does not help either. So, I guess we are moving back home tomorrow and will try to come and see Cami every chance I can afford the gas. We also do not have internet access at home right now and will not until we pay our balance in full. The crappy thing about that in August when I had Camryn and she was in the nicu I called the internet provider and told them to turn the internet off because we would not be living there again until our daughter went home. Well, they never turned it off until I accidently hit "internet explorer" on the screen when looking for the time and it came up. So, I called them and they told me that I never called and still owed them $680.00 They did at that time turn it off, but will not credit the unused 4 months. Anyway, the good thing about going home is that I am at home! I can visit my pets, which is a definite plus!
So, here is a list of good vs bad

*Going Home*
1. Sleep in our own bed
2. Cody will have both his room which is full of toys and the playroom we well.
3. Cody will be able to play outside (yard is fenced & I have dogs- won't have to worry about him being kidnapped.
4. I won't have to bleach Cody's tub everyday like I do here:) At RMH, I have to bleach it top to bottom when we first move in, but still have to bleach the tub at rmh daily because Kevin and I shower there as well and don't want him to have funky adult germs.
5. Last but most certainly not the least..... I get to spend time with my dogs!!
1. Will miss Camryn terribly
2. Gas will kill us financially
3. Will add so many miles to my car that Something is bound to go wrong.
4. Will have to go grocery shopping and since I am broke I am not quite sure how tht will
4. No land line, so in an emergency I am in trouble

*RON**ald McDon**d House*
1. I can visit Cami often
2. I can take Cody to the park right down the road and he likes to visit some of the displays at the hospital. They truly amaze him.
3. All the stores are so close to us here. I can walk to so many diffent store chains like Toys R Us, Old Navy, Target and lots of other stores.
4. Cody loves the elevator and get the biggest thrill riding in one.
5. Our electric bill is lower than ever now, lol.
6. We get lunch and dinner at the RMH every day of the week (it is included in $10 a day that a family is charged to stay here. (unless you have medicaid then medicaid pays for the family to stay at RMH

1. Cannot have food or drinks in the rooms (kids can have juice or milk in their bottle or sippy cups that don't leak
2. Have to do down to the first floor to refill Cody's cup
3. Have to keep refrigerated items in the fridge. You are supposed to write your name and room number on everything that you bought & brought with you. Well, I have spent a total of about 5 months here at the RMH and I have had MANY things taken. Example- brand new box of lucky charms, 1 pound of brisket from a bbq joint in Lockhart ( Lockhart has fantastic bbq) soda, beanie weanie cans, toaster strudels, vienna sausges and now for the absolute worst... Cody's Juice. Cody is only allowed soy milk, juice & unsweetened tea (or very lightly sweetened) So, since I go with the "no added sugar" in the juice- that makes it more expensive. The soy milk is like $2.60 for a half gallon. One day all of his juice was gone and most of his soy milk. (yes it did all have our name on it)
4. People will fill up all the washers and/or dryers full of their stuff for hours at a time. What does this mean for me? I have to keep going back every hour to check all of the washers/dryers (whichever I need) and sometimes the same clothes will literally be in there all.day.long.

Sorry so long. Just needed to blow off some steam at this point. I do not want to leave my baby girl, but I have to because I don't have $300 something to stay in a motel for a week. I don't have the $2k to pay our portion of the medical supplies and I definitely do not have the money to go grocery shopping to stock up on supplies. I have some meat in my deep freeze that should still be good but we need canned goods, fruits, vegetables, basically different food items needed to make it. Canned goods are not that expensive, so I should be able to wing that for now. But, when Sissy comes home I have to buy more formula which is going to kill us again. It is crazy that it took us 7 years to have Cody and then got pregnant with Cami less than a year later. I am so very blessed by my children, friends & family. Sorry for running at the mouth, I am just tired & frustrated.

I just noticed my donations on my blog!! THANK YOU TO THOSE WHO DONATED TO MY NEW CHIP IN!!! It is going to be used to purchase her medical supplies and if any is left over I am going to try and get my land line put back in.

My day just brightened. THANK YOU SO MUCH FRIENDS!!


Cody loves to wash his hands.
Close up of Cami with her NG tube in

Kevin, Me & Our Sweet Little Girl

left Tara, right Jax

Closest to camera is Ace, then Jax then Tara

We have been at the Ronald McDonald House since 12/7/10. When you stay at a RMH, you get to stay for 60 days, then you have to check out for at least a week and then if your child is still in the hospital you can come back with a hospital referral. Well, we have been lucky because since there were always rooms available, they let us stay past our 60 days. Well, now they are fully booked and have people on a waiting list. Where does that leave us? Well, we have to go home and then try to come back in a week. The problem with this? Well there are a few.
#1- Gas is at an all time high. I drive an suv and we live over an hour from the hospital. So, I can't afford to drive back and forth every day.
#2- Phone issues. Our cell phones do not work at home. So, if there is an emergency- the hospital cannot get in contact with us. I have to pay the phone company $118.00 (that is a deposit, I paid the amount that we owed them a long time ago) to get our home phone turned back on.
#3- Cody. Cody will have to ride back and forth with me every time I go to see his sister and that is a lot of time being strapped in a car seat. He doesn't watch tv- so putting a movie on will nothing for him.

I am in tears with frustration. The least expensive place to stay in Austin is about $50 a night and that is for a dump. So, we are stuck between a rock and a hard place with no where to go. It will cost about $45 a day in gas plus the approx 3 hours that it takes to make the round trip. That is hard on Cody. He is 20 months old- just a little big boy who likes to move around. It is going to be a complete nightmare to drive back and forth with him. I am darned if I do and darned if I don't. I feel like I am hanging on the side of a cliff and one by one my fingers are losing grip. I don't know what to do. I have to see Cami every day because we do trach care 2 times a day and a complete change 2-3 times a week while in training. (once she comes home trach change will only be 1 time a week but trach care will still be 2 times a day) So, now I have to come up with almost $2k to get all of her equipment. Plus $40 plus a day to go back and forth to see her. That is unless we stay in a hotel, but that is entirely too expensive. *sigh* Sometimes I just feel like giving up.

Regarding the comments about putting Camryn on SSI. The hospital applied for SSI back in November for her. We still do not have a decision yet. Apparently, it can take up to a year or longer to get a child on SSI. The hospital she was born in is the one who applied for it- I didn't even know that they did until we were checking her out of the NICU and learned at that point. We had an appointment in November but I haven't heard from them. When I called them on Thursday I was told that it is still in the "review" process.

Regarding "state" insurance. The hospital Cami was born in applied for that for her. We were turned down due to Kevin's income.

The good news in all of this is that we have a $5k a year max out of pocket. So, even though insurance has paid over a million dollars for my sweet little froggy girl, we are only responsible for $5k in 2010 and $5k in 2011. Except of course we still have to come up with around $2k for the equipment to bring Sissy home.

A while back I got the kids 3 guinea pigs. Cody is so cute. As soon as he wakes up he runs to the Guinea Pig cage and excitedly waves at them saying "hi, picks, hi picks" (he is saying hi PIGS) It is entirely to cute, he makes my heart happy. We watch a show called "S*ons of An*archy" which Kevin loves. So, we named the Guinea Pigs "Jax" (male) "Tara" (female) from that show and then the other is named "Ace" (male) I am getting my males neutered so that I don't have a guinea pig farm though. I had guinea pigs when I was growing up, I also had pet rats. I was thinking about getting the kids a couple of pet rats, but I was scared that the kids would pull his/her tail. I have taught Cody to be gentle to his "picks" He very lightly, using 2 fingers pets them and says "entle momma, entle" (he means "gentle momma, gentle" because that is what I tell him. He is such a loving compassionate little man. I feel so blessed to have him and Cami in my world. I didn't set out to get the guinea pigs when I did- I eventually wanted a couple when the kids were older, but when I went to the store one day there was a lady in front of the store giving them away because her son left for college and left his gp's with her and the female had 2 babies. She just had Tara left and the people walking in the store behind me had about 8 kids and they were trying to get Tara- so I grabbed her up so that she didn't end up hurt/dead at the hands of 8 kids. Well gp's are social creatures and so I had to get Tara a friend. The person I got Jax from told me he was a female- imagine my surprise when I found out that he was a male. (when I actually looked) So, I was happy with Tara and Jax, but then I was going into Pet*co to get gp food, chews and hay and there was a lady outside giving away Ace. Said her son was allergic to him. So, that is how I came to be the mom of 3 gp's. Tara & Ace look a lot alike except that Tara has wavy hair where as Ace has straight hair.

Please keep us in your prayers. I truly need them now.

Thanks & Much Love

Friday, March 4, 2011

Pictures from Tonight

Here are some pictures from tonight. Cody loves corn on the cob and made a grand adventure out of it. My niece looks so much like I did as a child. She is 5 now. Time flies.... I hope you enjoy the pictures.

Thursday, March 3, 2011

Money, Money

Spoke with the medical supply company this morning about getting all of Camryn's supplies ordered so that once we are done with all of our training with the g-tube and trach we can take her home. So, they are running through 20 million things on their list and I am just sitting there saying (uh huh, yes, okay) Then at the end of the call the girl wants to know how I am going to be paying for all of that today. Excuse me? She then tells me that AFTER the insurance pays that we still have to pay $1928.64 out of pocket. I just start laughing because well people- we don't have $1928.64. So, my life keeps on trucking.

Wednesday, March 2, 2011

Just Going To Stand There.....

Daddy, Mommy & Cami
Baby Cami (notice no ng tube in her nose anymore due to g-tube)

Mommy & Cami

Daddy & Cami (right before her trach change)

My handsome little man. He is such a mess

Since Cami has had her trach- you cannot hear her when she cries or when she makes any noise at all. I hate it because she cannot express herself. It makes me crazy- it puts me on the attack for my daughter. I am an easy going person.... Well, not really I USED to be an easygoing person. Now I am a nightmare in the form of a mom. I feel the anxiety on the floor go up when I get there. Every nurse there wants to be distanced from me. I am sure that "Camryn's mom" gets brought up a lot in their meetings and shift huddles. I am sure that I am called some pretty nasty things behind my back as well. You know what? I don't care either. People should do their job and I wouldn't have to be crazy. The other day I walked in behind another family (you have go dial in at the door to the unit and give a password to be admitted into the icu/imc wherever your child is) So, needless to say they didn't know I was there. I was able to walk down the hall and into Cami's room without being noticed in the least. I left her room door open the way it was and I sat in the recliner beside her crib (you can't see the person sitting there from the hall) What was I doing? I was testing them. Guess what? They FAILED horribly. I was in that room for over an hour and during that time Cami was crying most of it- her heart rate sped up and guess what? The nurse muted it from the hallway. She didn't even come into the room to see what was wrong. Mind you, Cami cannot make noise- so she sat there in silence. Mommy was there and of course I calmed her down- but no one came into her room. So, once I was able to calm her completely and change her SOAKED diaper and put on her diaper cream (because she has a rash... I wonder why?) I walked into the hallway and waited to be noticed- it didn't take long. I am a nightmare in mom's clothing. I tore that nurse apart, then the charge nurse and then the rounding Doctor. How DARE they ignore my baby girl when she is in distress? So, I have filed a formal complaint. I also told them that I never want that nurse with Camryn again. The charge and Rounding Doctor agreed with me that it was wrong and blah, blah, blah. You know, I.am.so.damn.tired. I don't understand why they find it so hard to give Camryn ANY ATTENTION AT ALL if I am not there to be sure of it. Don't get me wrong- she has good nurses too. It is just that the bad over shadow the good. Last night Kevin and I did a complete trach change and care together without anyone helping us. You know what??? This is the first trach change or trach care that Cami did not cry. I am not lying. As God is my witness, Kevin and I worked along side each other and she never cried. Even the 2 nurses watching us were amazed and said the same thing- that they have never known Cami not to cry and get herself worked up during anything to do with her trach. It was because we were GENTLE, TALKED to her and TOOK OUR TIME. It really isn't hard to take a few minutes is it??? Well enjoy the pictures- will do another post later- I have a meeting with the hospital about my "concerns" that I have to get to.