July Chat For NJ

[mousecrazy 2]

Alrighty then...Sherry will find out something on Wednesday, and Mandy will have her solution at the end of the month. Wish you could have the lap hysto, but what needs to be, will be. It will soon be over, and you'll feel so much better!

Now, let's hear from Kat, and see how the family is doing. I hope they have figured out what the common link is, and how to treat it!

Prayers, and hugs, all around!

Cindy

[sunsett 2]

Scary stuff with the little one! Kat I'm praying for all of you. God is with you all.

I went for another ultrasound today and the right leg is loaded with blood clots but it's not dangerous. I see the Dr on Wednesday morning. Looks like more surgery sooner that later. However it doesn't sound like a big deal and I should be able to go back to work the next day. They don't want me laying around. I won't be able to exercies for 2 weeks, but I haven't been able to do that for 3 weeks! Urgh...

Anyway Kelly and I are taking the core group girls to the beach tomorrow morning. It should be fun. Then we come home on Sunday night and I'm off to my new career on Monday!!! I'm so excited!!

Have a good weekend. I'm lifting everyone up. Seems like we all need it these days.

[Kat817 19]

Hi everyone---once again, thank you more than I know how to say for the continued prayers for my family and my little Kinsey in particular.

It seems that is was just an everyday gastro intestinal virus that was especially vicious, and contagious, as it has now taken 4 generations of us (my Mom is now sick) down in less than a week. No one else who was at the anniversary has been ill, so thankfully I did not poison everyone. Most of us have been hit hard, and recovered about as quickly, not so with Kinsey.

Her case has left her with issues in the colon. Her colon is inflamed, and non reactive. It is not allowing food to enter, so there is no absorption taking place. She is failing, bit by bit, and they have continued to tell us to wait it out. Today, they finally decided maybe that isn't working---and we had a surgical consult. He sent off yet more specimans for culture....and if it warrants it, we will be flying her to either Albuquerque to the University Hospital, or to Denver to the Children's hospital, depending on what type of issue they think we are dealing with. They have downgraded her condition to critical. She bounces from sleeping, which we found out was caused by her blood sugar being below 40! To being so irritable as to not be recognizable--a screaming raging child....to one sobbing for food. It absolutely has broken my heart into a million, million pieces. She tells us point blank she is hungry, and asks for any and all kind of food she can think of...with giant tears in her big blue eyes....then she just goes limp, with the look of total dejection. She is 2, she does not understand why we keep letting them poke her, why we will not feed her....why we don't help her when she tells us her tummy hurts. She begs, Please Granny. And repeats "no pokes, no needles, please" everytime someone new enters the room.

Add to this heartache (and it is TRUE heart ACHE), my DD's ex, Kinsey's father, is there trying as usual to be the funny man---and his mother an OR nurse at the hospital we are in, going behind everyones backs and putting down Dr.s and nurses, and questioning them and ultimately pissing them off--- and causing problems....I do not know which way to turn.

The ex, and his Mom were arguing with my DD about whether the Dr. might want to run a blood test that might tell them about a disease that my DD's grandma on her Dads side had called Celiac Disease. The nurse dislikes the former MIL anyway, so ordered everyone except the 2 who have been staying the night with Kinsey out of the ward. Now this being said....the arguement was not loud, it was out of the room, and Kinsey is the ONLY patient in Peds. She saw it as a chance to get rid of Renee (former MIL) and did it. So we all were banished. My DD was there with her bf/fiance....they had not had a chance to eat...well we are fighting to get DD to eat, she refuses until her baby can eat....it is more than I know how to handle. Rick waited until shift change, and took some dinner to the hospital, and they were going to take turns going to the waiting room---I just don't think my DD is eating at all either---I keep telling her Kinsey needs her strong. It is very hard to put anything in your mouth knowing she is begging for the same.

There were 3 nurses on the floor today, with Kinsey the only patient. At one point, she had a blow out---we had her in a diaper, due to this happening...but she went through the diaper, all over the bed, all over her Mama, her gown, the whole 9 yards. I sent my DD to change, and I proceeded to clean Kinsey up after telling the nurse. They were each on a computer comparing prices of the new Harry Potter book. I got Kinsey cleaned up, walked her out to the hall, found her a new gown in the shelf, took her in and dressed her. By then her Mama was back, and she sat down and held her, while I stripped the bed. I went walking out into the hall with this wad of smelly sheets and ask what they wanted me to do with them, she POINTED to a soiled linens hamper thing. Then she got up, walked to a closet, and handed me linens for the bed! They did not come in and disinfect the mattress----nor did she make the bed! I did. Our baby needed to lay down. They come in 2 times today and did vitals----nothing else. She is still casted, it was due to come off today, the nurse never mentioned to the Dr, we needed a ortho consult until after office hours---now she is stuck until Monday. They did not offer to help bathe her----NOTHING!!! Changed one bag of IV fluids....took 2 sets of vitals.....and surfed the net all day.

Now this is the first day for this set of nurses....all of the other shifts, and sets of nurses we have had, have went out of their way to make us comfy, and help our little one in any way---today they were absolutely worthless. Tomorrow I intend on finding out who the nursing supervisor is, and filing a complaint. I have no way to make our baby better.....and I have emotions pent up that those worthless women know nothing about----but are fixing to find out about! While I am there seeing the supervisor or charge nurse or whoever....I will also mention, that we had Kinsey in a wagon pulling her around and around and around the 3rd floor......anythnig but her room, she was so tired of her room....and on one of our turns we passed the ICU entrance. There was a male nurse there Julian, who teased her every time she passed, he would hand her a new crayon.....then a piece of paper....and finally a stuffed doll (out of one of the claw grabber kind of machines it seems). She was so listless, but she would spark a little knowing we were coming up to where he was....he helped our day immensley....I will commend him, as I do my best to take the others down. Amanda said he even come by to tell her to get well, he was going on his 4 days off, and he hoped she was home and well before he come back to work. Her nurse.....never even walked into the room before she left.

Thank you all for listening once again---all these things are boiling inside me. I am scared to death for Kinsey. Latching onto the anger I can control.

The plan as it stands now is to begin introducing good bacteria into the system tomorrow...similar to what is found in yogurt. IF the tests do not show a total shut down. If they show a total failure, we are off to a bigger hospital for surgery. She has lost weight, she is under 17 pounds now. She doesn't show it much because she is really swollen from all of the IV fluids. They are also watching her blood sugars every 3 hours (which is just another poke----and was NOT done on schedule today), and adjusting the glucose in her IV. They finally gave her some Pepcid type of stuff in her IV for the acid in her stomach, since nothing is passing normally. She has complained less of her tummy hurting with that. And that is all----we wait now....and wait....and wait....and wait.

I have my lap top, and I have connection. I just cannot sit in her room with these tears streaming down my face. You guys are my release in so many ways....thank you so much.

I will let you know something as soon as I can. Please continue the prayers.

Rick has avoided the vomiting....we got him some Kaitrel or something like that....so he is hanging tough. Being right there holding her like her Papa always does.

Hugs to you all!

Kat

[SherryW 4]

Kat - I'm so sorry for all you're grandaughter is going through. My goodness I do hope you get to say your peace with that hospital. Truly that's just wrong and for there to be 3 of them sitting there and watching there watching you change everything is downright WRONG! Amazing how this happens and they get away with it. Just craziness. I do hope you GD gets better so soon. I'm sending my angels to watch over her. Hugs my friend.

[NJChick 3]

OMG Kat whats left to say??? my heart sank reading your post. I don't know but can understand how heart breaking this must be and I'm so sorry you all have to go through this. You have every right to open your mouth at that hospital (patients rights ya know). When Kelsy is home, safe and sound....report thier ass's.

You are all in my prayers

.

Hi girlies.... nothing doing today SOSDD...maybe carnival tonight and fireworks but thats about it :eek:

Have a good Saturday everyone.

.

[NJChick 3]

Dianne sweetie !! what sort of surgery are they going to do on your leg???? is it the area where the clots are starting (the vein?). Feel better honey and good luck with your new job on Monday...your gonna rock-em !!!

.

[mousecrazy 2]

Dear Kat,

Just stay on top of it all. As hard as it is, and as tough as you have to be, you can and will do it. That's what we do. Everything you said...well, I remember those feelings from when mom was so sick. It must be worse with a 2 year old. DEFINITELY find the nusing supervisor or the patient advocate and tell him or her what happened. If you have not started a journal, start one. We wrote down everything...who came in and what time and what was done or not done. If you remember the names of the people, the exact times, etc. write that down so you have great info when you report your situation. Remember, you are not just getting back at the lazy nurses, but you are potentially saving someone else's family members. No guilt trips for that, that's for sure!

You and Rick are God's special gift to your family. Your strength, perseverance, dedication and faith have been called on time and time again. No doubt you are tired, and no doubt you are worried, but with things like this, there is also no doubt that you have been tapped to be there and serve your daughter and granddaughter, and you are doing it. If we can hold you up, even a little, through our cyberspace connection, it is an honor. If only our (((hugs))) could be real ones! Come here to talk anytime, and prayers are with you and your family (even the difficult ones).

Dianne, take care of yourself, and don't mess around with the blood clots...and good luck with your new job!

Hi, Eileen! We've got nothing much going on for Saturday...a wedding to go to tonight. Then tomorrow and Monday night, my sis, DD, and I are going over to dad's to stay...sort of a "Mom's birthday" celebration thing. We don't like to make a big deal out of it because we don't know if it makes dad happy or sad, but we don't want to ignore it, for the same reason. So, we'll go spend some time together, which is something Mom loved for us to do.

Hope everyone else is hanging in there...hugs all around!

Cindy

[piercedqt78 658]

Kat, I am so sorry for you and your entire family. When Abi was 8 months old she had a bout of diarrhea and it lasted for weeks, nothing helped. She was admitted to critical care when she was so weak that she was unable to hold her head up. I took her to the ER and they rushed her to the local children's hospital. She had no good bacteria in her bowels and was in bad shape. We had taken her to the doctor several times and he kept changing her formula thinking that was the problem. The put her on an IV and gave her the anti acid for the stomach pain. It took a few days but her bowels finally calmed down the bacteria balanced out. She spent 5 nights and 6 full days in the hospital, it was a long week. I too went 6 days without food. She was allowed Gatorade so that was all I had, and only when she was allowed to have it. I guess in my mind I was being supportive in my own way. The same as when my DH did my pre-op liquid diet with me. It was pointless but it made me feel better, and it's making your DD feel better too. I will say an extra prayer for your DGD today, and one for you too. It's a shame when nurses answer the call to nursing and then suck at it. I have a SIL that is a home health care worker and I would hate to be one of her patients. She's not nurturing with her own kids I can't imagine how she is with sick people. I hope things turn around quickly for that precious baby. Stay strong, we are here for you. ~Mandy

[Kat817 19]

hi---just a quick note---the live bacteria are helping it seems like. She is more alert, and has bowel sounds starting they think. I will keep you posted. Hoping this is the turnaround we need tomorrow will be a week since she has eaten anything that stayed down....she is wanting Granny to read. No books on the floor since they cannot be steralized, so I am finding stories on line, or pictures, and making up the story!!!

Will check in---thank you all!!!!

Love, Kat

[piercedqt78 658]

Can the two of you write story and then read it to her? Fold some paper in half, let her draw some pictures and then write a story to go with them. Abi loved doing that at 2. Here is a site for free stories....Children's Stories - Audio Renditions - Fairy Tales - Nursery Rhymes

Glad to hear there are possible bowel sounds. Give her extra kisses from the LBT girls. ~Mandy

[mousecrazy 2]

I just finished doing some school work (volunteer, of course!) and stopped in to check on Kinsey! Glad to see some hopeful signs here! Saying more healing prayers for her, and hope you have some good stories to keep her entertained, Kat. Mandy always has the best places to go to!

Give her hugs from us...and here's one (HUG) for you!

[Kat817 19]

I am only here for a minute, but had to report the good news. Kinsey received 2 doses of live bacteria today, and it has done wonders! She is talking, even sang a song for the nurses. She is sipping pedialite, and had a pedialite popsicle, and has kept them down. She once again had some diarrhea---not pleasant, but things are alive and moving, which is WONDERFUL!!!!! She still wants food she cannot have, and will likely have that as an issue for a couple more days----but things have made huge improvements. She has not had to have glucose added, her blood sugar is holding normal again....her blood work was ALL good.

Thank you all for hanging with me through this scary time.

I hate to cut this short, but I am going to go sit in the back yard with Rick, listen to the blues music coming from the park, look at the stars, breath deep for the first time in days, and Thank God....I just needed to stop quickly and thank all of you too.....I'll talk to you tomorrow!!!

Love Yas!!! Kat

[piercedqt78 658]

Kat, thanks for the update. I logged on just to check on Kinsey before going to bed. I am so glad that things are looking up for her. Do they have any idea what caused this? Keep us updated. (((hugs))) ~Mandy

[SherryW 4]

ok 2:00 am and I'm up with this good ole reflux. My God this is tiring. I actually tried to call the hospital yesterday because I know the bariatric center is closed on weekends. They tell us to call and ask for the Platinum or Purple team if we need help on off hours. I called 1st time and she says my surgeon is available for paging if necessary and i told her just speaking to someone already there would help. She transfers me to the Bariatric center which is of course closed. Call a 2nd time tell them not to transfer me there because it's closed, that i need the plat/purp team and he did the same freaking thing. Call a 3rd time and "john" answers. I tell him what happened, why I need to talk to someone because at this point I'm crying because this is scaring me and he takes my name, number and says Dr. Chang or Ching is on call and he'll page him to call me. 2 hours later no call, had to leave for a few hours get back, still no call (son was home to give my cell if needed) and for the rest of the night no call. I was to ticked to call again. SO here I am yet again in the middle of the night/early morning with a sore throat, coughing, can't catch my breath from the tickle/burning in my throat making me cough. I'M SOOOOO SICK of this already. I was hoping to talk to someone at the hospital to see if someone could take this Fluid out of my band or at least if tests needed to be done I could do that before my appt so the doc would have it. He's going to get an earful Wed let me tell ya. I'm calling on Monday but, I can guarantee I still won't be seen until Wed. I think the bariatric center I had my surgery is getting too big for his britches and isn't giving the patient care they did a year ago. I've been noticing it for a while but, now this really made me mad. I'm frustrated beyond belief that I'm ready to jab a needle in the port myself and take it out.

Sorry I think the lack of sleep is really getting to me and I'm worried

Kat...I'm so glad your baby is doing better. I hope she can eat the things she likes soon so she can get her strength back to come home.

Hugs

[piercedqt78 658]

Sherry, I'm so sorry for all the reflux issues. Are you on any meds for it? I take prilosec OTC and it really does help. Maybe give that a try, if your not already on something. I would call and ask to speak to the office manager and let them know that the hospital will not allow you to speak to the plat/purp team. They need to either start returning pages, or get the hospital to work with their patients. Then mention it again to the surgeon on wed, he can't resolve things that he is not aware of. I hope this works out for you, and I hope you feel better.

Kat, any news on the DGD.~Mandy