feeding tube is out!

Discussion in 'General Parenting' started by Jena, Jan 22, 2011.

  1. Jena

    Jena New Member


    so..... difficult child ate partial meals all day yesterday. was a very hard day for her. i was a bit beat up last night, she needed extra support last night so i stayed in the room with her.

    so deal was if she completed a meal with-o extreme fear and crying tube would come out!

    so today she completed a bowl of cereal two pieces of toast with butter and jelly and a large orange juice.

    tube came out!

    we're happy yet apprehensive. we've been here before. staying super positive for her sake ofcourse. doctor's said we have two choices we can either give her today and tmrw and hopefully she'll eat her meals. she doesnt' have to complete yet she has to make a good effort with ease. if so we can either send you home to n.y. and put her in the day treatment program.

    ummm winds up food phobia kids normally just go home after they complete three meals. it's that easily cured. didn't know that. that was shocking to me.

    they said because difficult child has so many other issues that it's not as easily cured she's a "unique" case. hmm how many times in 12 years have i heard that??? :)

    so i said ofcourse day treatment program. so we're keeping our fingers crossed she doesn't slide back and that she keeps eating. if not by monday tube will be put in again and personally that's when i'll probably melt down.

    doctor's keep telling me how are you holding up you sure your ok, you aren't upset you seem fine. nurses have been telling us how great you are with her so calm and so supportive. i said i decompartentalize super well, it's my MO. i box it, go in car at end of hospital day and i cry if i need to than meditate than go to bed and do it all over again.

    the doctor's said you have found your center here, haven't you? i said yes i have. there's been alot of stress from n.y. but it hits i get upset and i release almost immediately. not like a home.

    i said there are no dishes to do, dogs to walk, husband to stay up with. i've come back into my center here bigtime. this trip with her, has strengthened me in a way that i didnt' think it could. i knew i was strong before yet this is something that's hard to put into words.

    im not a religious person, i'm more spiritual. yet i gotta tell you the truth my faith's been renewed since here. i visit the chapel almost everyday to sit quietly meditate pray etc.

    i'm humbled and feel lucky when i see these cancer ridden kids walking through the hallway smiling at me, or i do an art project with them.

    life really has a way of fallling in line when you can sit with a child getting a chemo drip who is smiling and excited about the color red marker.

    don't get me wrong i have my moments, i do cry on occassion yet my inner self is slowly renewing.

    just had to share the difficult child news. alot better than my ny drama :)

    her'es hoping she keeps eating. yet whatever is to be will be.
  2. HaoZi

    HaoZi Guest

    I'm glad you're both finding some healing, both together and separate. I hope she continues to improve and they can act immediately if she starts back-sliding.
  3. ML

    ML Guest

    Thank you for sharing this awesome update! I'm really happy to hear you've found some serenity. Love, ML
  4. ThreeShadows

    ThreeShadows Quid me anxia?

    HUGS, Jena! You have a big heart.
  5. Jena

    Jena New Member

    WOW IS ALL I CAN SAY!!! We got it! she did it! soo much different than other times....... sat there no hesitation no crying no nothing. downed an entire sandwich and an entire sandwich! heart suddenly regulated, heart monitor is off too!!!!!!

  6. Castle Queen

    Castle Queen Guest

    That is a beautiful post Jena! (well, both of them). You don't "know" me that well but I've been following your and C's story and praying for you guys. I am glad to hear you're mentally doing well too, optimism tempered with realism.

    Way To Go C!
  7. Jena

    Jena New Member

    yup i'm just tearing up today like alot!! it's been a long 8 mos. a hard road. to see her wolf down a sandwich and entire banana without even hesitating than ask for more food! amazing. the heart suddenly regulated also. so we took our first walk outside in their children's garden together. she was so excited.

    crazy thing about having kids you can get hit so many times yet one good thing and it takes you all the way back up to the top. very hopeful today.
  8. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    You ARE strong, Jena. And I hope to heck progress continues :) Hugs!!!
  9. Jena

    Jena New Member

    thanks you guys help me more than you know. and yes i hope so too yet i'm leaving her in day treatment for a while to be sure. husband wanted me to come home in two weeks. i said i want to make sure this is gone. plus their helping with other issues and well it's beginning to be nice here in portland weather wise :)
  10. svengandhi

    svengandhi Well-Known Member

    That's great news.
  11. susiestar

    susiestar Roll With It

    WOW! This is AWESOME - for BOTH of you!!!!! I hope you are as proud of you as we are!! I know you are proud of difficult child, but you need to be proud of YOU also!!!

    She is one lucky difficult child to have a Warrior Mom like you!
  12. pepperidge

    pepperidge New Member

    wow--what major progress. You both must be so happy. What do you think made the difference this time?
  13. Jena

    Jena New Member

    i honestly do not know. i haven't even had the desire to figure it out to be honest~ i'm just so elated and exhausted. she ate lunch than said i'm hungry still lol. i had to run downstairs to get her a cookie and milk. it's weird with kids they can hit you so many times over and over again than just ONE good thing and you can sail high again. guess that's why we all keep having them. :)
  14. Marguerite

    Marguerite Active Member

    It's really good news. I do think you are wise to keep her in the day treatment program, though. After all you've been through, a few more days of baby steps will hopefully ensure the recovery is better nailed in place.

    Meanwhile, back in NY... is husband sorting out the problems there? He is the parent-in-residence, after all...

  15. DDD

    DDD Well-Known Member

    I just signed on to see if there was an update from you. Wow...I never thought it would be so awesome. I know it sounds silly but I will sleep better tonight knowing that progress (big progress) is being made. Also I think you are very wise not to jump back to NY. The two of you need more healing time before returning to the chaos. Many warm hugs coming your way.
  16. graceupongrace

    graceupongrace New Member

    Adding my hugs, along with prayers for continued progress.

    I agree with the others -- the day program will provide some reinforcement and help address her other issues.
  17. Jena

    Jena New Member

    oh yea im soo not leaving. she needs to do this till she's got it down pat, the therapy will help also. you can telll shes' back to her. defiant as all today with me lol. marg yea husband well it's hard he's working alot, the business is going under so we found a buyer/rather a partner to come in. otherwise the profit margin is umm hard to live off of at this point. so his big days off are monday and wednesday.

    yet i gave him a pep talk i told him be the strong man i know you to be, get easy child in line immediately deal with-/dog issue and clean the house. no one's cleaned the house since i left.
  18. lmf64

    lmf64 New Member

    woohoo I am so happy to read this. You know that I am praying for a successful completion of her treatment and healing. You are my idol, C.
  19. Jena

    Jena New Member

    unfortunately we had a witch nurse tonight............ i knew it as soon as we saw that face! she let difficult child's food sit out for 45 min. on the nurses' station before she did anything about it. so ofcourse by the time the food got to difficult child it was cold and it was pizza and brocolli with cheese.

    so i had to reheat it 2x for her. meanwhile nurse is sitting there saying "difficult child you know you have to eat 90%" of that food. i said you know it was sitting for 45 min at the station, right?? so long story short difficult child gave up got grosed out. i got frustrated. i told nurse that's it she's done.

    so i went to take a break in the lounge the stupid nurse called the doctor. (oh did i mention nurse came on, i ran to do laundry; i return fifteen min later nurse is downstairs talking to two guys in a car). anyway i return difficult child's crying dr is on phone telling difficult child that feeding tube will go back in on monday if she doesn't complete. i'm like oh man.

    so i got on phone and said in all fairness and you know im blunt the food sat for 45 min at the station i wouldnt' of eaten it either. she didnt' hesitate while eating it or get scared. she just got grosed out because it was freezing cold than hard from being reheated.

    i've been sooo lucky yet this little witch well you know the rest lol. she ended difficult child's day on a negative note from her actions or lack thereof.
  20. HaoZi

    HaoZi Guest

    Did the doctor handle the situation with the nurse? Have a fresh tray sent up of something else, even give her the option of that? Maybe some hot chocolate for trying even though it sat out?