Young Lexi and her Granma Connie need our prayers! Need a miracle!

1. 66

   CARIBQUEENposted 14 years ago

   I will pray continually for Lexi that she be healed by God's grace. Everything is in His hand. He is the GREAT PHYSICIAN! He can do what many surgeons cannot. He can turn the situation around. Continue praising him even though the tunnel looks dark. Do not go by appearances but by faith in what God can do. What He has done for others He will do for you. If it is His will.

   replyreport
2. 80

   Jen's Solitudeposted 14 years ago

   It has been four days since you last posted Connie. Wondering how Lexi is doing and whether it looks as if she will be going home in a couple of days? Hope you post an update when you get a minute or two. Give Lexi a hug for us.
   
   Dar

   replyreport
3. 66

   CARIBQUEENposted 14 years ago

   Lexi is a strong fighter.  I am praying that she gets through this. We all have to imagine that we are holding hands forming a prayer circle with Lexi in the centre. All our prayers should be as one and geared towards Lexi. There is strength in UNITY!

   replyreport
   1. 61

      Woman Of Courageposted 14 years agoin reply to this

      Caribqueen, Agreed.

      replyreport
4. 85

   Connie Smithposted 14 years ago

   So wonderful of you all to keep Lexi in your thoughts and prayers.  From Tuesday to early Friday, I went home, crawled in my shell (I am a Cancer the Crab) and had a hard time coming back out to go back to the hospital.  I just allowed my nerves to get the best of me for a few days.  I knew that when I went back I was going to have to learn how to CHANGE the trach, which I actually did (and did not pass out or throw up!)  It has to be changed weekly and the straps on it have to be changed daily.  I can now suction the trach with the best of them, like an old nurse, but still worried about changing the trach again!
   
   Lexi's room is almost ready.  We had it painted, as it was the play room before.  We had put Lexi and her brother in the same room when we moved because we thought Lexi would benefit from it.  She had become too much of a loner with her illness this past year.  Anyway, now the hospital bed has been delivered and she is scheduled to go home on Monday, if all goes well.
   
   She is stable, still comatose, but starting to open her eyes wider and, just a teensy bit, sometimes I have felt that, for a moment, that there was a connection.  I don't know if it is just wishful thinking or not.  She is on Ritalin, as a coma therapy, which has shown some improvement in some comastose patients.  I just did some addtional research and found that Ambien (yes, the sleeping pill!) has had some very good results in comatose patients, so can't wait to see that particular doctor so we can discuss Ambien if the Ritalin doesn't pan out. 
   
   Still hopeful, but losing hope, as I am sure you all understand.  Still, at my darkest doubtful moments, someone comes along and gives me hope again.  For instance, I was speaking to a young mother who has been in ICU as long as we have (who I had never spoken to before) and she told me that when she was very young, she had a brain tumor that calcified and so it never needed operating on and just never bothered her after that.  It makes me want to think that these types of things are signs, as it was just by chance that we ended up being able to chat for a minute.

   replyreport
   1. 66

      CARIBQUEENposted 14 years agoin reply to this

      Connie:  Your feelings are quite understandable and justified. The best of us may not have been able to undergo what you are going through. You will have dark times but feel reassured that all our prayers are with you. The Lord says, "FEAR THOU NOT FOR I AM WITH YOU, BE NOT DISMAYED FOR I AM YOUR GOD, I WILL STRENGTHEN YOU, I WILL HELP YOU"

      replyreport
5. 71

   earnestshubposted 14 years ago

   My sincere best wishes for a good outcome to all concerned. I do hope Lexi gets well.

   replyreport
6. 85

   Connie Smithposted 14 years ago

   Take a look at this, Lexi's faithful friends!  She is on Ritalin and here is a very short video showing how much she has improved over a week or so ago before she started Ritalin.
   
   
   http://www.youtube.com/watch?v=ePcs2b6dOME

   replyreport
   1. 76

      Aficionadaposted 14 years agoin reply to this

      She's beautiful!!  And she looks much more alert in the vid than I had expected.  Continuing to pray and hope....

      replyreport
      1. 85

         Connie Smithposted 14 years agoin reply to this

         The video makes her look more alert than she really is.  That is just a moment in time, but shows that she is not ready for a vent to be pulled, like they pressured my daughter to do a few weeks ago.  She is still most asleep all the time, with some moments when her eyes are open.  I am not sure if it is wishful thinking, but once or twice, I felt that there was a connection, albeit briefly.

         replyreport
   2. 61

      Woman Of Courageposted 14 years agoin reply to this

      Wow, She is precious.

      replyreport
7. 70

   seanorjohnposted 14 years ago

   Prayers said this evening for you Connie and your beautiful daughter Lexi.The support you are getting from hubbers such as Rebekka E and Pattie Inglish and others is wonderful.This is the first I have heard about this desperately heartbreaking situation you and your daughter are facing.The video clip of your beautiful daughter shows what a fighter she is. I will include Lexi in all my prayers especially over the Easter period.

   replyreport
8. 76

   Patty Inglish, MSposted 14 years ago

   You all just made me remember another tumor case like this, where the tumor became encapsulated by some type of membrane and became easily removable from a woman. She had no ill effects after surgery at all. Completely recovered.
   
   And there is always the little boy we know, Cody, born without even a single brain cell showing on medical imaging, who is now just a couple years away from entering college and a straight A-student in regular and advanced classes.
   
   And there is also Austin, who was born with a more severe range in Autism and never expected to speak or understand or walk, who also became a straight-A high school student, and began university in Ohio in the Fall of 2010. His very last symptoms were some problems with coordination, but he kept exericizing and concentrating  and praying; and they disappeared in the Spring of 2010. He could play sports now if he wished. He was already riding motocycles with dad.

   replyreport
   1. 85

      Connie Smithposted 14 years agoin reply to this

      I love all these stories, Patty.  These are all miracles and prove that miracles do happen.  We need one and hearing them does give me hope.  Thank you for posting them.

      replyreport
9. 84

   Zsuzsy Beeposted 14 years ago

   Hope things are going well. Connie thank you for the update and for the video. Squirt looks so much better than I expected. Prayers for that miracle coming your way. Best wishes too for an easy move to get Lexi home.
   Strength to you all too.

   replyreport
10. 85

    Connie Smithposted 14 years ago

    Lexi is home.  We got home tonite at 6 pm.  It was not an easy move, as there are many things required that we didn't have.  That would be supplies for the trach cleaning, etc., and other new equipment that we didn't have before.  At the end, there was no fanfare, and not even an escort out to the car.  They rolled in a wagon and told us to pull her out in that, so we did.  We lined it with a blanket and a pillow and then parked it in the lobby when we got her in the car.  There were a few scary moments on the way home when her oxygen level dipped -- and stayed dipped (she requires a lot of suctioning right now).  I pulled over and suctioned her when I could and we made it home okay.  She seems happy and has rested very peacefully since we got home.  We think she is happy to be home, even if she cannot communicate that to us.
    

    replyreport
    1. 59

       all-about-orlandoposted 14 years agoin reply to this

       Lexi is so beautiful.  Sending prayers to Lexi and you all at this difficult time.

       replyreport
11. 81

    habeeposted 14 years ago

    I'm praying for this beautiful child and her family!

    replyreport
12. 61

    Woman Of Courageposted 14 years ago

    Connie, Everything will work out well. It's already done in Jesus name.

    replyreport
13. 80

    Jen's Solitudeposted 14 years ago

    WELCOME HOME LEXI!
    
    What a relief to know you made it home safe and sound. I sure was hoping to read that you were able to get her home and am so thankful you posted this update.
    
    Sorry to say that the hospital has not been very impressive, but I suppose that is at the bottom of the list of major concerns right now.
    
    I hope Lexi continues to rest peacefully and that we will be able to see a marked improvement the next time you put up a picture of her. I watched the short clip over and over again. It is great to have a picture and video to save and view when she is in my thoughts.
    
    Now that she is home I will dare to ask how your health is doing? How is the fibro? Is your body running on adrenaline or is it signaling you that it is time to rest up. Don't ignore the signals my dear. We know what can happen to you when you do. (Okay lecture over)
    
    All my love to you my friend,
    Dar

    replyreport
14. 84

    Zsuzsy Beeposted 14 years ago

    Yeah Lexie is home, how cool. Connie thank you so much for the updates and pictures. Keeping my fingers crossed that everything will just get better and better every day.
    Strength to all of you, my thoughts and prayers are with you.

    replyreport
15. 85

    Connie Smithposted 14 years ago

    Thank you all.  Somehow, Lexi has survived the Lucy and Ethel School of nursing trainees that she had today, which, of course, would be me and Mommy.  Poor Lexi.  I explained to her that she was like our little guinea pig, since they put us out in the cold with little to poor training.  Fortuntately, we didn't do anything irreversible.  Unfortunately, it will be a week before our in-home nurse can start, and then, we only get her for two weeks. By the time she starts, we will have trained ourselves and won't need her.

    replyreport
16. 65

    Lisa HWposted 14 years ago

    Connie, I was just getting ready to sign off for the night when I saw your post.  It looks like you've had a long day.  Hope you're holding up well enough. I guess, no matter what they went through, Lucy and Ethel managed because they always had each other.     Sincerest wishes for better days still being sent your way.

    replyreport
    1. 85

       Connie Smithposted 14 years agoin reply to this

       So sweet and wise of you to say that, Lisa.  I can't think of anything more encouraging than having it pointed out that my daughter and I will manage, just like Lucy and Ethel always did, because, just like them, we have each other.   Thank you for that.

       replyreport
17. 72

    Mighty Momposted 14 years ago

    So happy to hear Lexi is home, Connie.
    We all continue to cheer her on. GOOOOOOO LEXI!
    And I have no doubt your home nursing is the better than any trained nurse could give. Never underestimate the healing power of LOVE!
    All the best to you all.
    MM

    replyreport
18. 80

    Jen's Solitudeposted 14 years ago

    Well if the nurse ends up being someone you trust, you could use her two week stay to rest up a little. Two weeks will go by quickly but still might serve to recharge your energy supplies which must be running on "E" right about now.
    
    What kind of night did Lexi have?

    replyreport
19. 85

    Connie Smithposted 14 years ago

    Lexi's nurse is great!  Thank God, because we really are exhausted.  One of us (myself or my daughter) has to get up every two hours to turn her so she doesn't get bed sores.  Most of the time, one of us is up long before the two hours because her oxygen levels get too low and the machine starts beeping.  Sometimes, we have to do suctioning and sometimes it is because she has knocked off her oxygen tube that goes to the trach. 
    
    We have also had one or the other of my other daughter's sons every day this week, so we have not been able to rest while the nurse was here.  My one grandson is only 20 months old.  Too funny, as it is always something around here.  That is what happens when you have four grandchildren who are five and under.  I won't really have a rest until they are all much older and then I have to start worrying about where they are, lol.  It is a good thing they are all so darn cute. 
    
    We feel Lexi is becoming more active and tonight, we even thought she might have shaken her head no.  We definitely think she does not like the braces that we have to put on her legs every few hours and I think that trach really bothers her when she is more alert.  Those are very good signs, which makes everything we do so, so worth it.

    replyreport
    1. 76

       Patty Inglish, MSposted 14 years agoin reply to this

       It sounds like good news to me! Prayers still up

       replyreport
    2. 61

       Woman Of Courageposted 14 years agoin reply to this

       Great news. I pray that God will give you strength to endure each day while taking good care of Lexi.

       replyreport
20. 84

    Zsuzsy Beeposted 14 years ago

    Great news Connie. We too will keep on with our prayers. Hugs and good thoughts coming your way.
    
    Try to take care of you too.

    replyreport
21. 80

    Jen's Solitudeposted 14 years ago

    Great news about the nurse Connie. Still worried that you and your daughter aren't getting enough rest, but I will just have to trust that you both will take care of yourselves so that you can continue to take care of Lexi.
    
    Thanks for sharing the improvements you continue to notice with Lexi. It is very encouraging!

    replyreport
22. 85

    Connie Smithposted 14 years ago

    We are hanging in there, Dar.  The last few nights, I've been staying up until five am, but then sleeping until noon.  Kara is sleeping from 9 pm to around 5 am, so we are getting plenty of rest.  We do not have to be awake all night, but Lexi has needed a lot of suctioning the past few days.  We are taking her to a pulmonologist tomorrow, after an appointment with the pediatrician today. 
    
    From the hospital to the insurance company to their medical equipment provider, I have enough Hub material to be writing for some time to come!  Too bad I don't have the time and energy to do it, lol.  One of these days....I am hoping to write a few contest entries when that starts.  Are you going to do anything?

    replyreport
23. 92

    RedElfposted 14 years ago

    Our thoughts and prayers are with you and your family. Our church family holds you in its prayers!

    replyreport
24. 80

    Jen's Solitudeposted 14 years ago

    Funny, I was thinking that you have plenty to say about all this. LOL  I will patiently wait until the time is right so that you can do so. I am going to try to write something as well. I have been working on one hub forever, seems like I should be able to pull it together by the time the contest begins.
    
    That's a good schedule you two have worked out for taking care of Lexi and getting enough sleep. I guess I won't worry as much now. LOL
    
    Let us know how it goes with Lexi's lungs and the problem that is requiring her to need suctioning so often.
    
    As usual, thanks for taking time to keep us updated. It is really appreciated. You all are indeed 'hanging in there'.

    replyreport
25. 72

    Dorsiposted 14 years ago

    My 14 year old neighbor and I have been praying for Lexi, and we just wanted to let you know she is being thought of...in many ways.

    replyreport
26. 59

    all-about-orlandoposted 14 years ago

    Continuing prayers for Lexi and you all at this difficult and tiring time.  She is a little fighter.

    replyreport
27. 85

    Connie Smithposted 14 years ago

    Lexi is doing okay, but she has some kind of respiratory problem -- on top of the natural secretions from the new trach.  Kara and the nurse took her to the pediatrician yesterday.  Lexi has the best pediatrician ever.  She loves Lexi and has even cried many times over Lexi's condition.  She even gave my daughter her actual cell number, which of course, my daughter would never ever abuse.   Dr. Amy demanded that the pulmonologist see Lexi asap (so difficult to get an appointment there and they are the only game in town....), so me and the nurse took her there today.  Our appointment was for 10:15 am and we were seen at 12:45....however, once we got in, the doc was great.  Waiting was difficult for Lexi.  I tried to hold her, but it made her cough more.  She got so tired of laying in that uncomfortable stroller that she reared, arching her back!  I thought that was a very good sign.
    
    Lexi is going on an additional pill to supplement the Ritalin, called Amantadine (sp).  It works with the Ritalin to raise the dopamine levels so that, hopefully, Lexi will really wake up.  We have been trying to get the 7 pills for a week.  First, we were told they only had 4 (CVS).  Well, we need 7, so forget it.  Today, we were told that now they are waiting on confirmation by the doctor and then it will need to be approved by the insurance.  Hello?  The doc prescribed it! On the day that Lexi was released from the hospital!
    
    That is all for insurance purposes, so my daughter, taking a cue from me....said how much is it if I buy it without insurance?  They replied, "$27......"  Lexi was supposed to start it last Monday.  Time's a' wastin' on this, so no matter how much, I think we would need to consider it.  Lexi needs to wake up and needs every tool to do that.  This pill has worked before, so we need to try it.  In the meantime, Lexi has a brain tumor, so we don't have 20 years to wait for insurance approval....
    
    In spite of it all, Lexi is hanging in there.  We think that every day there is an improvement in something that she does.  She now yanks the tube to the oxygen off of her trach quite regularly.  When we get into the room -- machine beeps if oxygen levels go down a little -- she is actually holding the tubing.  Tonight, she curled her fingers around her brother's hand.  I think she is going to come out of this, so please, keep those prayers going.

    replyreport
    1. 61

       Woman Of Courageposted 14 years agoin reply to this

       Those are good signs. God is a miracle worker.

       replyreport
28. 65

    Lisa HWposted 14 years ago

    Wishes and prayers still coming in your direction.  (I can't believe, with a little girl in Lexi's medical situation, that there could EVER be a matter of insurance approving something like medication.)  For what it's worth...   still watching and hoping for Lexi, Connie.

    replyreport
29. 80

    Jen's Solitudeposted 14 years ago

    Connie, both those meds are actually used by people with MS to help with fatigue. I took Amantadine until it stopped working and many PWMS take Ritalin to help them stay awake. Of course it is used off-label which is probably why the insurance is dragging its feet, especially with her being a child. I can really see how both meds could positively impact Lexi. I totally understand why Kara would be willing to purchase them herself if they prove to help Lexi.
    
    Good to read about her pediatrician, she does really care and will do all she can to assist Lexi.
    
    You guys are truly learning all the ins and outs of the medical profession. I'm glad there are some good experiences to offset so many bad ones.

    replyreport
    1. 85

       Connie Smithposted 14 years agoin reply to this

       So funny, Dar.  I have always said I could never be a nurse.  Of course, it is slightly different due to the fact that I am tending to a child and might be why I am handling it so well.  Just call me Nurse Nonnie, lol. 
       
       Very interesting that you used to be on Amantadine.  How did that make you feel when you first took it?  Drowsy?  Agitated?  Curious as to what kind of effect it might have on her, especially with the Ritalin.  Did you take both at the same time or know of someone who took both at the same time?  btw, What is PWMS mean?  Not sure. 
       
       So how are you feeling?  I keep thinking you must be feeling good lately but let me know.  You know I care about how you are doing.

       replyreport
30. 80

    Jen's Solitudeposted 14 years ago

    Love makes us do amazing things Nurse Nonnie! LOL I'm not surprised you are the nurse you never thought you could be.
    
    I will have to do some research because off hand I can't recall  people with MS (PWMS)who have taken both at the same time. Amantadine didn't energize me as much as it just evened out the extreme fatigue. (Hope that makes sense) I also appreciated it because it protected against viral infections. I don't recall having any noticeable side effects which was another reason I was happy with it.
    
    Ritalin is much harder to get for MS. That is why I started on Prozac when I really wanted to try ritalin. I really don't know about taking both those meds together but will see what I can find out from my MS friends and get back to you.
    
    Oh and I am doing well enough. Looking forward to April and hoping I begin feeling even better.

    replyreport
31. 80

    Jen's Solitudeposted 14 years ago

    Connie, found this link that discusses combining the two drugs, of course it is concerning adults, but it may help you in your decision.
    
    http://www.bluelight.ru/vb/showthread.php?t=417367

    replyreport
    1. 85

       Connie Smithposted 14 years agoin reply to this

       I appreciate you taking a look for me, Dar.  Take a look at this one:
       
       http://www.deseretnews.com/article/7998 … -coma.html
       
       Lexi is on the Ritalin, but waiting for the prescription for the Amantidine.  Tonight, there is NO doubt in my mind that she held my hand purposefully.  This child is improving daily.

       replyreport
32. 85

    Connie Smithposted 14 years ago

    Lexi continues to improve daily.  A retired nurse,who is a friend of mine, is coming in a few nights a week to help.  We were getting pretty exhausted.  Both nurses are confident that Lexi is NOT in a coma anymore, but we have not had a doctor tell us that as yet. She has an appointment tomorrow with her neurosurgeons and I am anxious to see what they think.
    
    Lexi started her Amantidine a couple of days ago (along with the continued Ritalin) and I have also seen some improvement.  Her day nurse says that today, her pupils were moving more.  She pulls her oxygen tube out all the time and last night, she grabbed onto the suction tube when I was using it.  She opens her eyes, very similar to the video I posted, but doesn't really show much beyond that.  Today, I thought I detected a widening of her eyes, like she all of a sudden recognized me, but it is so hard to say as she cannot talk even if she wanted to, due to the trach.  Both nurses do not think she even needs it, but it is hard to tell right now.  Lexi is scheduled for an MRI this Friday and I am anxious to see how that tumor is doing.  I pray that it has not increased in size since the last time.   
    
    I will post back as soon as we get some additional news.  Again, I thank you all for loving Lexi and caring about her.  She is so precious.

    replyreport
    1. 76

       sabrebIadeposted 14 years agoin reply to this

       I cant give any medical advice but I will keep praying!

       replyreport
33. 84

    Zsuzsy Beeposted 14 years ago

    Awesome news Connie. Will keep on with our prayers, many hugs and tons of good thoughts coming your way.

    replyreport
34. 80

    Jen's Solitudeposted 14 years ago

    I am most anxious to hear what the neurosurgeons think as well. I'm also wondering just what constitutes a coma? Will be looking for your next update.

    replyreport
    1. 85

       Connie Smithposted 14 years agoin reply to this

       Sounds like a good hub topic, Dar.  I am up to my eyeballs in work right now or I would do one.  I need to research that a little more, obviously.  My real estate license expires on the 1st and I have to do 14 hours of continuing ed by then and I am way behind on my school work (and my house work....).  In the meantime, here is a link to an article for you:
       
       http://www.mamashealth.com/coma.asp

       replyreport
35. 85

    Connie Smithposted 14 years ago

    The neurosurgeon was not all that encouraging today.  He thinks she might be blind and ordered tests done by EEG to find out.  Not sure if anyone remembers, but they thought she was blind last year, too, even several months after her surgery.  She wasn't and I pray that she is not this time either.  Maybe it just takes her longer.  Our nurse (her last day is today, sob!!) says she sees great improvement and that the doc didn't see how alert she can really be. It is hard to see anything in a  15 minute exam.  He has also ordered an MRI for next month, so we will not get to see how that tumor is doing until then.

    replyreport
36. 61

    Woman Of Courageposted 14 years ago

    Hi Connie, God has the last word. Lexi will pull through. I believe she will not lose her eyesight.

    replyreport
    1. 76

       Patty Inglish, MSposted 14 years agoin reply to this

       I agree.

       replyreport
37. 80

    Jen's Solitudeposted 14 years ago

    Thanks Connie, the link answered 99 percent of my questions. I see why you all (nurses included) are so hopeful from a medical viewpoint. Seems to me she is slowly coming out of it. I don't understand why the doctors are not more encouraging given the information contained in the link you included. Regardless of their reasons, I'm just glad to see her responding in such positive ways. I look forward to reading more about her small steps back and please don't forget to let us know how the tumor is doing after the upcoming MRI.
    
    Much love!
    Dar

    replyreport
38. 84

    Zsuzsy Beeposted 14 years ago

    In my thoughts and prayers
    
    hugs

    replyreport
39. 85

    Connie Smithposted 14 years ago

    Lexi is hanging in there.  We are not, lol.  We have spent the week fighting with people to try to get the supplies that Lexi needs AND even worse, a nurse.  Our last day for the nurse was on Tuesday.  Fortunately, a friend of mine, who is a nurse, has been coming in a few nights to help.  We would be totally exhausted otherwise.  Lexi requires a lot of care all the time, but particularly at night she seems to need more suctioning.  On a good note, she is starting to turn her head away from the suction tip when I try to do her nose, showing that she doesn't want it.  Also, yesterday and then again this morning, it seemed like she was trying to lift her head up off the bed.  It is also hard to tell, but she appears to watch her videos of Max and Ruby, which she was really into before she got sick. I am feeling a bit more hopeful.  I know that this is different from last year, but her current condition is mimicking her recovery period from last year in many ways.  Since she ultimately recovered, it makes me think that it is possible this time.  I pray that it is so.

    replyreport
    1. 72

       Dorsiposted 14 years agoin reply to this

       I'm so glad to hear of Lexi's improvement. Prayer is so powerful. I am concerned about the stress and lack of sleep for your family. Are there any local agencies that can help? Has anyone provided you with a list of local resources? Sorry if this question has already been asked.

       replyreport
40. 84

    Zsuzsy Beeposted 14 years ago

    Baby steps towards recovery are good. Thanks for the updates Connie.
    My thoughts and prayers are with you everyday. Remember to take care of you too.

    replyreport
41. 67

    prettydarkhorseposted 14 years ago

    That is good to know and count me in for the prayers!!!

    replyreport
42. 80

    Jen's Solitudeposted 14 years ago

    After all she has been through, it makes total sense that her recovery would be slowed considerably. Still, progress is progress and keeps us all hopeful that it will continue.
    
    If they don't want to provide a nurse for you, what do the powers that be expect you to do besides wear yourselves out completely? Will they provide a nurse at a later period of time? Considering Lexi is no longer being hospitalized you'd think they would have no problem allowing a nurse at least once or twice a week????

    replyreport
43. 76

    AEvansposted 14 years ago

    I will pray for Lexi and also have my church pray for her too. My heart goes out to them. She is heautiful! I pray that God will heal her.

    replyreport
44. 84

    Zsuzsy Beeposted 14 years ago

    In my thoughts and prayers always.

    replyreport
45. 85

    Connie Smithposted 14 years ago

    Lexi is in the hospital, but is doing okay right now.  She went in because her feeding tube was clogged, so it was nothing major.  After Lexi had her hemorrhage, they decided to put in a J-Tube, along with the G-tube she already had.  The difference is that anything put in the G-tube goes into the tummy and anything put in the new J-tube goes into the intestine.  We think it was unnecessary at the time and now they are trying to tweak her feeding schedule -- which was not broken -- and Lexi has not been doing well.  Yes, unfortunately, we had to go back to St. Joseph Hospital due to all of Lexi' records being there and her having such a complex condition. Her tube is not clogged anymore, but Lexi has been running a fever so they are keeping her.  They are talking about doing the EEG for the vision and hearing tests, so hoping that happens right away, while she is still there. 
    
    This is fantastic:  Lexi tried to lift herself up!!! This has happened several days in a row. We also think she tried to say "No," but she has the trach and can't talk with it.  We are trying to get that out ASAP but now that it is in, it looks tough getting rid of it.  Her doctor doesn't even take Lexi's insurance and no one else wants to see her since the other doc did the work....we want to hear her talk!!!!  It is imperative that we know if she can talk, so I might have to be banging some heads.  This saga will probably take some time to deal with.

    replyreport
46. 59

    SomewayOuttaHereposted 14 years ago

    Wow Connie...this is amazing news!...yes - keep banging heads and working that system...she's fighting right along side of you.  I've been reading this thread. I don't always post.  Thank you for sharing little Lexi's updates.

    replyreport
47. 65

    Lisa HWposted 14 years ago

    Another "Wow!" from here, Connie.  I'm another one who's been watching but not always posting.  Your post sure made my heart pound a little faster when I read it.    Fingers crossed - and thoughts still with Lexi (and you and her mother).

    replyreport
48. 84

    Zsuzsy Beeposted 14 years ago

    What awesome news Connie. Lexi will show them all how to take the world by the horns. Will keep on with our prayers, many many hugs and tons of good thoughts coming your way.
    With Lexi being in the hospital hope you and your daughter will have a chance to take a bit of time for you and maybe take a nap or a bubblebath or whatever makes you relax a bit and rest up so you're all ready when she comes home...
    
    as I said
               in my thoughts and prayers always

    replyreport
49. 80

    Jen's Solitudeposted 14 years ago

    I can't help but wonder why the doctors seem unable to concede that Lexi might just be doing better than they anticipated. Such a hostile atmosphere must be so rough to deal with, but as was stated she is a fighter and I don't believe even hostility and a lack of cooperation will stop her!
    
    I hope you are able to find out if she can talk too. Seems that is something they would want to confirm as well. They are planning to test her eyesight and hearing but they don't care to see if she can speak???? I am sure they will perform ALL the tests once they understand you all are insisting on it.
    
    Makes me wonder how they would want things done if it was their own child in this situation? Maybe you should ask them for me. LOL
    
    I'll be glad when her temperature returns to normal and I hope they realize she is beating the odds and begin to help her more to your liking.
    
    Thanks so much for the positive update, sorry for the constant hassles though.

    replyreport
50. 60

    cindi hposted 14 years ago

    I've spent the last hour and 1/2 reading all these posts and my heart is in my throat! I will not only pray for Lexi but I will bring her story to my daughter's school and ask that all the children pray for her and pass on her story to everyone they know. God will hear us!!!!   God Bless you all and may He keep you strong!!!

    replyreport
    1. 85

       Connie Smithposted 14 years agoin reply to this

       So very sweet of you, Cindi.  Lexi needs all the friends she can get.   When I think of children praying for Lexi, I get especially choked up.  Lexi has received several cards from children and they are so special.  One little girl drew a picutre, pasted her own picture on it and sent it along with "praying hands," cut-outs of her own hands that were taped together in prayer.  So sweet and thoughtful of the mother (the little girl was not much older than Lexi) to teach her daughter such things.

       replyreport