I need sleep

[breezeesmommie]

My beautiful 3 yr old Breanna has been sick for almost a year, after being told time and time again that all she had was a virus I finally flipped and demanded that they do something. I was in agony watching her scream in pain and could not do anything to help her. Well, finally I guess to shut me up the hospital ran a cbc and sent us home, I didn't even get her buckled in to her car seat when my cell phone rang and my husband(Brian) said that the hospital called and they wanted her back in, her lipase level was at 1800. She at that time was dignosed with a choledoctal cyst that would require surgery, so they treated her for pancreatitis she was npo for 6 days and miserable, they sent us home and 4 days later she was back in the hospital her lipase was at 4400 ( a normal range is 0-60) again npo and then told that she does not have a cyst she had gallstones, so on Nov 1 2005 they removed my daughters gallbladder which is very rare for a 3 year old. She was fine

UNTIL

Jan 6 2006 she woke screaming in pain we called her surgeon brought her to emergency, they did xrays said that she was full of poop did a cbc and sent us home with a prescription for colase. Surgeon calls at 9 pm her ggt level is elevated and they are still waiting on lipase levels and will call us back in the morning. Surgeon call in a.m wants Bree back her lipase is at 11500 and her x-ray shows a spot on her lung they want to redo tests to confirm that the test are right. We redo tests and CF may be the dignosis. Currently she is npo and in the hospital till who knows when. They have done a DNA test which will take awhile to get back, so they are going to try to do the sweat test on monday.

I am terrified. To the best of our knowledge no one in the families have Cf, my girl is tall for her age she wears size 5 jeans for the length and she weighs 38lbs. So I am trying to educate myself on Cf and coming across this website I do feel a little better I thought that Cf was a death sentence, it's good to know that there are people with Cf that live normal fufilled lives.

Thanks for listening

Sue

 

[anonymous]

I am sorry for all that you are going through. You will find lots of support on this site...I'm brand new, too and everyone here has helped me to start learning about CF and helping my baby. If you stick around, you are sure to learn a lot and also get lots of support. You are in my thoughts.

 

[anonymous]

Please keep us posted!! Deb (Mom of 3, 2w/cf)

 

[LoveShines4Austin]

After Austin was diagnosed with CF, we checked with all family members that we were able to contact and no one could think of any family members that had CF. As we looked back in our family history on my father's side, there were several people that died young, but we don't know why...it <i>could</i> have been CF. We have no way of knowing if the gene is somewhere on my mom's side of the family because her father was adopted and we have no medical history. My son's father, has no idea about his family past. I never met any of them, so I have no clue either. My grandfather tried to blame Austin's side of the family. That is so wrong! He's a mean old man anyway. We can't and should never place blame anywhere. It does no good <img src="i/expressions/face-icon-small-sad.gif" border="0">

I hope the best for you and yes, please keep us posted. *hugs*

 

[anonymous]

Big Hugs to you! I hope you get the results of the sweat test today, that you little girl get better soon and that you are able to get some rest soon! Please let us know what you find out.

 

[breezeesmommie]

[No message]

 

[breezeesmommie]

Thank you all for your comments.

Bree is still in the hospital under going every imaginable test tomorrow she will have the sweat test. She is still NPO so all she gets is broth and juice so as you can imagine she is miserable. I am home tonight with my 2 yr old who is sick with a cold, at least I get to sleep in my own bed for a night.

I was reading some other logs on here and all I can say is be as pushy as you can to find answers. I live in Canada so I don't have to pay for these tests and I want answers. They are talking about doing a liver biopsy
as well as all these blood tests today alone she was poked 6 times.

DS needs attention now will post more updates later

SUE<img src="i/expressions/angel.gif" border="0">

 

[Tammey]

Hi,

I know how you feel, my daughter is 3 and has been sick for about 9 months- there are grasping for straws saying she had a virus and then pnemonia. I have been to an allergy doctor and no luck- and we have a sweat test appt next week at stanford. Im new to this as well. i wish you luck and please let me know how she is.
Tammey- Kayla's mom

 

[breezeesmommie]

Well it is now early Friday morning.

Currently Bree is sleeping with her Dad and her little brother Will(2), the hospital let her go on a overnight pass. Her sweat test came back at 38 so far no CF. She had a CT scan done today which shows a blockage as well as all her bile ducts are inflammed. As of Monday at her ultrasound none of this had showed. Her lipase level has been normal for 2 days now so she is now on solid food but we are no closer to a diagnosis.

Her ultrasound did show a Grainy Liver so we are waiting for all her test results. They have tested her for Hepatitis, Wilson's disease, IBS, Crohn's etc etc etc

I lost it today I was miserable and crying all day, trying to keep up my spirits, but it just wasn't working. All I want is to know what is wrong, it amazes me that when her lipase was at 11500 there was no inflammation, then her level goes back to normal and she has inflammation, she has 5 Doctors treating her and not 1 can diagnosis her.

 

[smoothdave]

hey it was exactly the same as me, i am the only person in my whole family to ever have cf.
keep in touhc with the site there is some gr8 ppl on this site and there is a lot of support.
they always seem to be hear when u need them.

take care
dave

 

[anonymous]

I know what you mean! Monique was tested from two weeks old for every imaginable thing. She was in and out of hospital all the time, she even had a sweat test done that couldn't pick up the CF(the DNA test wasn't available then). At 6 months she had only picked up .02 of a kg(sorry not sure of the conversion). Finaly when I had almost given up, they did another sweat test and that was positive for CF.

Don't give up, I hope you have a diagnosis soon. I will keep your beautiful little daughter in my prayers!

 

[anonymous]

If you still get no answers or diagnosis, it may be a good idea to have her sweat tested at a CF Center, where they know what they're doing. Also there is a blood test for CF too.
I wouldn't rule it out completely until you've had a couple of negative tests (one of which was done at a CF Center).

 

[breezeesmommie]

Good Morning

Bree has just left to go back to the hospital. She had a really rough night. she kept crying in her sleep, her stomach hurt, her I.V hurt. The Doctor had said that she could come home if her lipase stayed normal and she was able to tolerate real food with no pain, well I guess she won't be coming home today.

I work 2 jobs. I just started a new one on December 14th so I am not off my probationary period yet, all I want to do is take time off to be with her no offense to her dad but I am better at all the medical stuff, needles and right now I am the only she will let flush her I.V. Brian(dad) almost got kicked out of the hospital the other day. Lab tech came to take blood and he started to dig with the needle as he had lost the vein Bree was screaming that he was hurting her and lab tech says if she would have held still he wouldn't have lost the vein, so Brian told him to get the hell out and get someone who knows how to deal with kids as Bree is very brave and co operates, b/c she does not like to be wrapped in a blanket to have blood taken so she knows we will not wrap her if she holds still as best as she can and co operates. So now she freaks everytime someone comes near her to take blood or check her I.V. I have informed the ward that NO ONE is to touch my girl unless a family member is present, the nurse looked at me as if I was the biggest bitch on the planet, and stated that if the parents get upset it makes it harder for the patient, I was like I don't care this is my child and I have a responsibility to protect her the best that I can and I will do what I have to to make this as easy as possible on her.

So they take her to another ward after 3 different lab techs try to get blood as Bree now will not let anyone take blood without fight. God Bless that nurse she calmed all of us down and took the blood out of the I.V so Bree was not poked again then reemed out that bitchy nurse and said to always try to get out of the I.V first. Nurse states that you should only take 12cc out of I.V but by going slow she was able to get all 20cc's and not blow the vein which avoided pain for Bree. There are some good nurses and some nurse hatchetts ( one flew over the coocoo's nest) out there. The lad tech was lucky I wasn't there b/c I would have decked him lol

That's all for now off to work. Thanks for all your prayers and thoughts

Sue

 

[breezeesmommie]

Reply to post

Bree is at childrens hospital in Winnipeg Canada her sweat test was done at the CF clinic there and we are presently waiting for the blood results.

Thanks

 

[JazzysMom]

Just when U think that U or the patient cant take anymore an angel of a nurse comes in.......I always made sure they knew how much it meant when they came to the "rescue". Of course with the tears in my eyes as I told them would probably say everything!

 

[anonymous]

No family history for us either. DS passed the sweattest with a 32. Blood test showed differently that he in fact did have CF. BTW, there's an ointment they can use if they're going to do blood draws that numbs the area. On lab days we make sure DS gets that stuff applied, so we don't have to help hold him down while they do multiple draws. He's usually pretty good, but I don't want him to get traumatized and be afraid of going to the doctor just 'cuz of one bad tech experience.

 

[debs2girls]

I am so sorry you all are going through this and cant get a dx. We are also having a time of it....it all sounds so cut and dried to me..do a sweat test, a blood test and ask about history of infections...etc..right? Wrong.....I am still not sure why we cant get a possitive dx...he is still saying "probable CF" but we will never rule it out because she has too many phenotypes. Ok, now we are faced with a different problem...the respitory specialist wants Cheyenne to have a vest...the dr said our insurance probably wont pay for it since Cheyenne is not dx "with CF Just probable".......ok, the next breath he said....we are still going to treat her for it because of all the pneumonias, finger clubbing, ftt, gastro problem etc......I AM ABOUT TO GO CRAZY.........anyone else feel this way? Why not just say she has it?
This is probably not making alot of sense...sorry.
Debbie

 

[Alyssa]

Sue, my kids sweat test results are 38 & 41, yet the blood tests show they both have two CF genes (DeltaF508 & R117H) -- just wanted to make sure you are aware that having a 38 sweat test result doesn't always mean no CF. Keep up the good work, I know this is a tough time. I hope things improve soon!

Debbie,
I don't understand why they cannot just give her the dx either! Sounds so frustrating! Have you asked the doctor outright? -- is there some medical "rule" out there that says he cannot give the dx? Sounds like Cheyeene fits so many of the symptoms plus you know she has one identified gene-- now with needing the vest.... seems like he would just put the dx on her chart and let you get on with things.

 

[JazzysMom]

Debs2girls......everytime I read your posts of being in limbo with no official dx I want to scream. Please dont take this the wrong way, but are U being too passive with the doctors? I mean not only is your childs immediate care in jeopardy, but potentially future problems can arise like disability etc. There are so many things that the life with CF affects now & later that I would be screaming from the mountain tops until I got a definite diagnoses one way or the other. I am not casting blame & maybe U have addressed why there is such delay & confusion, but frankly to me as a CFer & a parent I dont give a hoot why.....I would like answers! Thanks for listening!

 

[breezeesmommie]

Hi,

Time for yet another update. I leave work and get to hospital at 6pm, Bree is lethargic crying in pain and sweating, she is not a happy girl. Her lipase was normal yesterday at 43, well her dad and I know her symptoms well and when she complains that the light hurts her eyes and wants all the lights off and pulls a blanket over her head we know that this is starting up again, we have been going through this for the last year.

So I get her nurse have her vitals taken temp is up a bit and get her I.V hooked back up. All evening she is crying in pain and sweating, she wouldn't eat or drink so at 820 pm I buzz the nurse Well Bree's nurse doesn't come in some other nurse comes in I tell her to ask Bree's nurse to come in and take her vitals again and to bring pain med, nurse does not come in till 930 so I am irate at this point and I ask why it takes over an hour to get her nurse she replies that she has 7 patients so she is busy. WRONG ANSWER. I inform her that is not my problem and all she had to do was stick her head in the door and say that she was busy and would just be a few minutes that I could deal with or she could have given me the pain meds and I could have administered them, instead my daughter is suffering b/c they don't have enough staff on. I come from a family of nurses I know the drill my mom and my sister are nurses I know about staff shortages. So I finally get all Bree's stuff done and get her settled for the night.

We all know those chairs they have that make into beds for us parents to sleep in well Bree wakes up at 0130 and wants to sleep with me but wants to sleep on the chair with me well if it makes my girl happy I will be more uncomfortable, well busy nurse comes in wakes me up and says that Bree can't sleep in the chair with me, well I give the nurse a choice get the hell out of our room or I will sign my daughter out of this hospital and take her home where she can sleep with me. Nurse leaves and does not bother me again.

I know I probably sound like the parent from hell but this is my child, and it is hard enough of a situation to deal with without nurses telling me what I can and can't do with my own child. I follow rules if they aren't stupid they said that its against hospital policy for the kids to sleep in the chairs as they could fall. Have they seen how high those hospital beds are, I would be more concerned if she fell from there then a chair that is 5 inches of the ground.

I woke up this morning with a pounding headache and I am all stuffed up and coughing. So I have finally got the cold that my son has just what I need.

Well I am going for a nap

Sue