Pediasure

Those doctors abound. There are so many doctors that think nuerologically disabled people (including kids) have less value. I think its partly because they have always been with the super smart folks from the time they were kids. That's how they managed to become doctors. Their brains are what make them valuable and how they define value. A word of advice, take down the names of the crappy doctors because they will reappear in your life at a different hospital. After my DD's first stroke some idiot doc told me my DD had a brain tumor and that we should withdraw care and put her in hospice and that she would be dying soon. I made him pull up the CT scan and said, "that looks like a contained hemoragic stroke to me." ANd I remeber clearly him saying "I'm the doctor here, you are just the lawyer." The "lawyer" got a second opinion. Yep, stroke. The doc had the nerve to come up to later in our stay and argue for his position. My dad (the most passive MINISTER you will ever meet) told the guy that if ever got within 5 feet of my family again he would personally teach him what its like to live with a disability. 3 years later she has another stroke and he shows up at a different hospital as the neuro sugeon on call. He wants to do brain surgery. SHe has a 25% of surviving but its probably kinder to let her go now anyway. . .yada, yada, yada. We told had to ask to have him removed from her case and we were told there were no other options for pediatric neurosurgeons so it couldn't be done. I calmly explained that that must mean she won't be having surgery. She is still alive 3 years later and although she functions very low, she still enjoys life 95% of the time and we still enjoy her 100% of the time. Then their is the infamous spinal tap doc. We learned to say the line "Thank you we understand the risks and we would rather she die than have a spinal tap by you ever again." We got the "keep her weight down so you can lift her" speech from a couple of doctors also. So its not like you heard wrong or did the wrong thing. I'm impressed that you checked out of a hospital. I have never had the guts to do that!

I am also impressed that you checked out of the hospital, way to go, Mama Bear. We were harrassed by every doctor we saw to make sure she a polst form(used to be called an advance directive), then when we did fill it out they wanted to argue about our choices, again I reiterated that I am not going to just let her die, if she can be helped I want her helped. They look at me like they feel sorry for me and think that I don't really understand my daughters condition, believe me I do!! I have also been asked many times why we chose to adopt her, what nerve people have. Like you say, Nevada Jen, our daughter is content about 90% of the time, and when she is not she gets all the love, care and attention that she needs, we adore her and I don't care that they can't see how special she is.

I must make a correction. I do not enjoy my DD 100% of the time. When she pukes, I don't find that enjoyable. AT ALL! Its one of the few times when I feel like saying "I wish the **** kid was verbal so she could say, I going to puke get me a bucket." At least last night she puked on DH. DH drove her to school today to tell them nicely to stop feeding her cafateria food.

Thank you for the support. It is nice to come here and type to people that have btdt. I live in a smaller town (not tiny but not huge). There are no known cases around here like my daughter. Therefore I dont feel like I have the best support. Yeah I get the oh I pity her, or I dont know how you do it, so on and so on. Like your children for the most part my daughter is very pleasent to be around. She has her bad days, but in mho all children do. She may not have the life other children have but she has life in her. And until God and only God decides when her life should end I WILL fight for her. I am normally a push over until it comes to my children then I will throw down lol. The doctors that I take her to now are WONDERFUL. I feel like they really care about her and are willing to help her. She had an appointment today to schedule surgery for nissen, and to place the mickey button. (she is on ng tube right now) The o.r. was booked on the days that the surgeon was working so he told them to book it for Tuesday and he would work his day off. That says a lot for this guy.

That sounds like a good doctor. My daughter has a Nissen and a mickey button. She can take nothing by mouth as her gag reflex is significantly impaired. She had copious secretions and had recurring pneumonia from aspirating her own oral secretions. Now, I have a great pulmonologist who has implemented some great ideas to decrease her secretions and to keep her mouth very clean so if she does aspirate some spit it is not full of bacteria. I, too, feel that my daughter has a lot of life inside of her and we try hard to bring it out. I pray for my daughter every day and I know God is in control and He and only He will decide when he wants to take her home, until then I will never give up on her.

So you are getting the button in a week? Will it be for 100% nutrition or just to supplement? Remember MAKE SURE YOU HAVE EXTRA BUTTONS BEFORE YOU LEAVE THE HOSPITAL/SURGERY!!! Especially if you are in a smallish town, you may find that you have tons of trouble finding them. Good luck on the surgery!

Yes she will get her button next week. At first all food will be given by the tube. After she heals we are going to start trying some solids by mouth. She was aspirating liquids before so he thinks that she will more than likely never be able to take liquids by mouth. They changed her formula to the pediasure peptide. I had wic appointment today and the woman was soooo rude. She acted like the money was coming from her paycheck. But, we did get some help with that. :D They will not cover it all but it helped out a lot.

I have heard that the WIC people are nasty and basically get off on making you feel stupid and forcing you to answer questions that are highly insulting. But if it saves you a few hundred bucks a month, its worth a couple hours of being talked down to. Good luck with the surgery!

my thoughts exactly.. I bit my tongue and took all she could give with a smile lol. then complained when I left.. thank you

Did you get the mic-key and did the surgery go all right? Been thinking about you.

She had surgery Tuesday morning. Everything went great. She done better than what they expected her to do. She is tolerating food very well. They put her on 12 hour feed through night and 3 bolus feeds through the day. I cant believe how easy this has been. Such a big stress off of me. I now know she is getting the food that she needs and she is getting all of her meds:cheer:

So glad to hear that everything is going well! Putting in a MicKey is such a scary decision but once it is done it really makes life so much easier :flower:

Glad it went well! I have a strong memory of the weight off my shoulders knowing that I would be able to get DD's meds into her no matter what. I'm glad they are doing over night feeds. That really frees kids up to be kids (or at least do something other than be fed).

All Health depts are not bad. Ours was really great with my babies. Another thing. All HD's have a service called CSS childrens special services, that helps in anything that you may need..It's for sn kids. Also some Ins co's won't pay for one type formula, but will another. Like they wouldn't pay for the pediasure, but may pay for Nutren jr (thats what my kids are on). Glad that things are going good for ya'll

My Bio Son Who Is 3 Has Cancer The Doctors And Some Of The Nurses Around Here Know That I Foster And Adopt And I Took My Son In To A Chemo Appointment And We Got A Rude Nurse That Said When She Was Looking Over His Medical History “Why Would You Foster A Kid That Is So Needy” I Responded Calmly “He Is My Son And I Love Him” The Nurse Was Extremely Rude And I Filled A Complaint (I Have Had Over 40 Special Need Bio,Adopted,And Foster Kids And None Of There Care Team Have Been As Rude As That Nurse) I Can’t Believe Medical Personal Are So Rude