Ryder is in the hospital...the bug has got him bad. Its been a scary weekend....so bad we had to call 911.... Ryder is still having bad issues with everything.....they say preemies catch it all....esp the ones that get CP......well thats true....I think Ryder has rotavirus....a horrible infection in the intestines/ stool.
Banner desert is being lame...and I hate it there. I'm trying to get him to Phoenix childrens where his GI doctor is... and nuero doc.....cuz banner desert is not answering my Q's....and treating me like I dont know my own kid...they sent in some "specialist" today to make sure that I knew my "my sons diet of only formula shouldnt continuw after one year old..." WELL DUH!!! you think I dont know my kid!!!!????? I kindly told the girl that Ryder shes MANY DR's and specialists and he's on the formula still for a reason!they told me to keep it that way cuz he has cp!!!! and isnt a "normal kid!"
Then Ryder puked all over his arm/ IV bandaids....( ill explain that sad ordeal) anyways I've beenbugging them to change it or cover it...they wont.....I'm not happy with the service there at all! I'm so stressed out with it all....i never cry but ugh they put me there!!!
But WONDERFUL DR MANCUSO!!!! I LOVE THE GUY!!!!! wow he made us feel so much better, he saw rys name on the ER name list, and hunted us down our first trip there saturday....and was so kind and cheered us up....then today i was SO stressed and was walking out the peds doors and there he was....he gave me a hug and told me that we are so good, and strong. What a wonderful DR, unfortunately with what ry has dr mancuso cant help.
And Shannon Green...she made us feel so good in the ER shes the child life specialist/and my moms neighbor....and amazing at her job! she made Greg and I and Ryder feel so much better....she was with us thru the ER stay...which wasnt good for little Ryder.
w/in 24 hours ryder was poked 19 times for a Iv's only 2 of those pokes were a success. The EMT couldnt get it....he went thru 6 or so ER nurses attempting it.....they were talking about doing a neck IV on a big vein or thru the bone marrow....drlling into the bone. They were desperate...but a great ER nurse steve ( great guy!!!) tried 3 more times with a special light and got it!
since ryders had a rough life with many iv's his veins are scarred and extremely hard to get an iv into. So now we have to ask for a trauma nurse to get the IV...in fact greg juswt called and said ryders iv went bad a half hour ago....and the nurse was going to try for another iv but Greg said, "no! get a trauma nurse to do it" and the T nurse came and got it on the first shot. Thank goodness!!!!! ryders body already is filled with white dots from the NICU ivs, and pricks....and today he's covered in little purple bruises from the 20 x hes been poked for ivs alone...that doesnt include the pokes for blood work either!
On top of all this....we are not moved out at all and our lease is up tomorrow....i hope something works out....because we are so overwhelmed with Ryder I hate thinking about the move.
I'm trying to stay happy and positive but this time its SOOOOOOOOO hard....I feel like im losing my mind....ugh. and Greg is feeling the stress to. We love ryder so much and this worries us badly....we are not getting the answers we need at Banner desert and i hate that. so tomorrow im going to try and get him transferred to phoenix childrens...where all his major DR's are...and i love the staff there!
oh i think ryder has rotavirus....i had to research his symtoms myself and figure it out...lame huh??? a nurse at desert agrees with me. but they wont test him for it....so lame. and they are testing him for RSV because he has a cough....i keep telling them....its his reflux, and low tone and CP....and that his throat is irritated by the puking....but they have him on lock down for RSV....im so frustrated!!!! I know my own kid.. he isnt even congested its a dry cough. oh well. Sorry can you tell im so mad!?? i'll try and update more later.
Monday, March 30, 2009
Posted by The Pages at 9:28 PM
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8 comments:
Kira.. I know you already know this but call on everyone you know to help you.. Your ward can move you, this is a hard time but you will make it through! Our prayers are with you and your sweet family!
I agree with Staci, get someone on Phone duty and have them start calling and getting things taken care of get the RS to get dinners worked up, and I KNOW YOU, this isn't what you want but you have to give others the chance to serve you so you have the energy and strength to be 100% for you babe!
I am praying for you and your little family. I hope you get Ry where you are more comfortable and that they find the answers you are needing! We love you guys so much!
HUGS! I wish we where closer to help out! I am glad you are at least where you have family. Count your blessings! You are loved!
wow kira. you are amazing and so is ryder. i really feel for him and wish i could help out. who can i call and yell at? lol your family is in our prayers. i'm going to put his name on the prayer roll. what a sweet guy, it's awful that he has to go through all that.
I am sorry you have to go through this. It is hard to see you r baby suffering and you can't do anything about it. I can totally understand the frustration with Dr's being ignorant like they no everything. I had that problem with my daughter. She had this wierd red bump on her head that starting moving across her forhead and started growing. The dr said it was an allergy i told him to test her for strep. She was 9 months old and he said she was to young for strep. I said i don't care test her anyways and he did but made sure i knew i knew it wasn't strep. After and ER visit and another trip to the Dr. Antibiotics and 3 days later we got the phone call that it was indeed Strep. Dr.s need to learn that sometimes/ all the time. Moms know best.
We are praying for all of you Kira. HF loves you and he will see you through this. Hang in there~! If you need people to move you don't hesitate to have your Dad let us know. We will come and help.
That's awful Kira! I am so sorry your little boy and your family has to go through this. Ryder is such a sweet heart and all of you are in our prayers.
This was not an update just a flat out vent! I am so proud of you! This is what a blog is for. It is not to update us or make us, the spectators feel better about our own situations. It is for you to keep record and keep in touch with family during your difficult times. It is meant to help you reach out and get the support you need!
I feel so blessed to know you, Kira, and I feel your strength every time I read your blog. You and Greg are such wonderful people!! Thank you for sharing your life with us, but please, never feel bad for expressing what you really feel. Bryon and I wish we could be there to help lift some of the burden. Kiss Ryder for me and tell him Aunt Sara loves him and his parents very very much!
KIRA!!! I am so sorry that Banner Desert is being so stupid! I know what you mean though. We had plenty of moments like that. Hopefully you can get him to PCH where all his doctors are. Seriously...call me if you need me, I'll send my number to your facebook. I am so sorry you and Greg and Ryder are going through all of this. I PROMISE that you will all get through this and better days will come. Love ya!!!! Please let me know if you need anything.
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