I missed this thread completely. My prayers go out to that cute little girl, Lexi, to Connie and the rest of her family.
Good morning, all. Lexi is still resting peacefully, still in a coma and still in critical condition, of course. The doc was hopeful yesterday, as Lexi moved her leg once, moved her finger, I think and moved her mouth slightly. It doesn't seem like much, but according to the doc, it is. After the doc is in this morning, we will know if the surgery is still a go for tomorrow.
I have very mixed feelings about this, as I do not want Lexi to live with major disabilities. She got through the first surgery last March, in spite of everything, with her intelligence intact. I do not want her to lose this and not have a full life. I worked at an assisted living facility for adults with mental health issues, including brain trauma, for 6 years and I know how girls end up. I do not want this for my baby girl and pray that God will guide us in making the right decisions for Lexi. Please join me in this.
This is another picture of her taken at Disney last Wednesday.
Connie thanks for the update. Keeping my fingers crossed that everything will turn out just right.
Strength to all of you, my thoughts and prayers are with you.
Lexi's surgery has been postponed to at least Friday. The doctor wants her to further recover from the brain trauma that she has had before adding to it. She has shown a bit of improvement, actually lifting and bending her leg. It is a euphoric feeling to see that and yet, seems so strange to get such a feeling from a simple leg movement. I won't post again until there is some news to update you all on, but please keep up the prayers. Thank you all so much.
It's a constant prayer Connie! I'm encouraged by the movement; I think miracles are sometimes simple or come in small steps.
Thanks, Patty. The only thing really getting me through these past few days is my fervent prayer that the brain hemorrhage was actually a miracle from God -- his way of breaking up a tumor that was considered inoperable and answering our prayers by making it operable. Of course, it remains to be seen if that is his will, but I pray that it is.
She is still the same. She is in a coma, on a ventilator. They have said she could possibly come off the vent but they are leaving her on because of the operation that we hope she can have soon. She is not really responding much to any stimulus, like light shining in her eyes, but we are still hopeful. So wonderful, though, that so many people over the world are loving Lexi and praying for her. Here is a picture of Lexi with her little "soldier bears" who came from Kuwait to help Lexi fight. Supposedly, the little maroon one is extra fiesty and hopped out of the box to let the Fed-Ex lady know that they needed to get to Lexi straight away. So precious!
Thank you Connie for the update and picture. How sad to not see Lexis awesome smile, the one she carried just a few days ago while at Disney world. I just want to get there and give Lexi the biggest bearhug.
I know it's hard, but make sure you take care of yourself too, Connie. To be able to stay strong for the rest of the family you need to sleep and eat, don't forget.
Take care,
My thoughts and prayers are with you.
Lexi's condition is unchanged. However, we have had some requests for an address so people can send cards. I am posting it here. **We are NOT asking for cash donations nor do we need them, however cards or letters and prayers are very welcome.
Lexi Thomas
PO Box 863
Dunedin, FL
34697-0863
Again, we are not requesting cash donations. If you are interested in donating, consider donating to St. Jude, who was willing to help Lexi and will, most likely, still be involved, at least on an advisory level, if she can get to that point. St. Jude helps children with cancer from all over the US and, though they bill insurance if it is available, they never bill the parents. They are truly doing God's work there.
Just checked in and was relieved to read your post, of course I was still hoping the update would contain good news, but will take this for now.
Thanks for checking in Connie. Kiss Lexi for us!
We won't relent in prayers. "For to him that is joined to the living God there's hope; a living dog is better than a dead lion." I command her to come out of every bondage of sickness and disease that has held her down in Jesus' Name.
Her situation will supernaturally change to good news in Jesus' Name. God is doing it.
The news from the doctors this morning was not good. We had a meeting and, though they gave us options, it was clear that they think Lexi is not going to get better. The end result is that we are going ahead with putting in an internal shunt (the external one, after a while, is dangerous due to infection) to continue to drain the fluids from the brain and try to give Lexi more time to heal and time for God to hear our prayers. We are not ready to give up on Lexi. She is a fighter!
Love and prayers with all of you today, Connie. Especially with and for little Lexi.
Doctors sometimes give up too easily. When a large church here in town has prayer in the park beside Nationwide Children's Hospital for the neightborhood and the sick kids inside, some of the doctors bring patients out to the pastors and others praying.
I think everyone shares your willingness to keep a fighting spirit and attitude. Please let us know how she handled the shunt and her current condition, even if it is unchanged.
You all will remain in my deepest thoughts.
I will continue to hope that Lexi, you and all her/your family find their way through this. I think Lexi gets her fighting spirit from her family.
Connie, there are people "out here" who you and Lexi don't even know (like me and people in my personal life, with whom I've shared Lexi's story), and in a lot of instances, have never even heard of - continuing to send wishes, love, and prayers in Lexi's and your direction (and, of course, the hope for your continued amazing strength and faith); and hopefully watching for your updates on Lexi. I know you have a pretty good idea that a whole lot people are sending wishes, prayers, and love in Lexi's direction. I don't think, though, there's any way you or Lexi can ever know how many more there are "out here" that you don't know about.
Continuing to watch and hope... Continuing to keep Lexi and you in my thoughts.
Thank you so much, Lisa. I do know that there are plenty of people "out there." I have tried myself to reach as many as possible and have enlisted the help of others, like Zsuzsy, who has kindly posted this forum. The bears in a recent picture was sent by a man, a retired military guy, that my sister knew in the Air Force, who works in Kuwait. He is passing the message on there and thanks to friends and family -- and to all of you -- plenty of people are hearing our message and praying for this sweet little baby girl. Still, though I know that it only takes one prayer to get to the ear of God, I want more, more and more people to pray for our darling Lexi. Thank you for putting the word out. This is what is keeping me sane.
The internal shunt won't go in until Monday, so until then, probably not much will be happening unless Lexi wakes up (Please God!). I realized I left that hanging when I read Jen's post. I'm not sure if I ever mentioned it, but Lexi had really gotten into "lipstick" which is really flavored chapsticks and glosses. They are available in an amazing array of flavors and styles. We have at least 85 here at the house, all opened and with the lids off. She could carry 6 in one hand and freaked if anyone tried to get them or smell them. I think it started because it was something she could taste. Lexi has been on a feeding tube since last March when she had her first surgery due to a weak swallow from cranial nerve damage. Other than a 6 pack of Oreos that she sneakily ate (and fortunately survived), these lipsticks are the only thing she's been able to taste. The other real joy in her life recently is to have her nails painted. We are keeping her lipsticks with her and last night I found these stickers for nails at the store. I sure hope she gets to wake up and see them. She would be over the moon!
Connie, my 10 year old granddaughter has taken it upon herself to enlist the help of her class mates along with their teacher to share a prayer for Lexi every morning. The updates on Lexi are really appreciated.
Stay strong
My prayers and best wishes for Lexi, strength to you Connie and to your family. It's so hard to be helpless when a loved one is so ill.
Lexi did well during her shunt operation. She is still in a coma, but has made a couple very small movements that could be encouraging. We are still praying for our miracle.
Good news about Lexi's operation, Connie!
I just thought of a quote that I use as a signature on one of my email accounts. I'm quoting from memory, so please bear with me:
"There are two ways to live your life. One is as if nothing is a miracle. The other is as if everything is a miracle."
--Albert Einstein
The scientific medical experts have done their best.
The rest of us are still praying our hardest!
Thanks for the updates.
Sending you cyber hugs... MM
I too think the movement is encouraging. All the best to you Connie and Lexi and prayers still going up.
She is AMAZING! I'm relieved to know she handled the operation, now we wait and hope for continued signs of progress. I can only imagine what a gift it will be for you all when she awakes from the coma. Thanks for the update Connie.
I'm so glad to know the shunt procedure went OK, and that she's showing those encouraging signs (even if, for now, they seem small). Still thinking about Lexi. Still wishing her (and you) strength. Still hoping that encouraging signs keep coming.
Thank you all. Every little bit, I beg her to wake up. I have been so fortunate to be with her around the clock for the past 4 days. Tomorrow, I go home so my sister can spend time with her. I really do not mind being at the hospital with her, and truthfully, sleep so much better here than at home. In fact, they probably are wondering how I sleep so well....I know I am right here with her and I know she knows that, too.
I totally get why you sleep better by her side, as does everyone, I imagine. I also know she knows you are there as well, both of you fighting together. Every passing day gives her more time to heal, if we think about it in that way maybe it won't be so torturous.
If you have ever prayed for Lexi, it is time to give it your all. Lexi's condition is unchanged, yet Lexi's doctors say that she is as awake and responsive as she will ever be. We are praying very hard for a miracle from God, our only hope. The doctors say there is nothing to do, but let her go. So, so difficult to do when she is loved so much.
Continuing prevailing prayer for Lexi, as always; believing and waiting. --
But be encouraged, because even if unplugged, God can intervene. If her body is simply too worn out, she still knows she is loved here by many and that you gave everything you had for her and you are sending her on to good.
A newborn in our church showed no evidence of a brain at all on x-rays, but was breathing in a vegetative state. The day after, a large prayer meeting around the child was held, the next day doctors found a small but complete brain. The child is a straight -A high schooler now; name of Cody.
Miracles happen and situations are different - a prayer, a command to the body, or a letting go could any of them be the key. God's in it and we pray the Holy Spirit around you all in Jesus's Name, no matter what happens.
Praise God! and thank you for your wisdom. And thank you to JenS/Dar too.
Love and continuing prayers for Connie and family.
I keep Lexi and all her family in my thoughts Connie. Perhaps now is the time you close together and decide what's best for Lexi.
...oh my...my heart goes out to you, Lexi, her mom and dad and all other family..........she's so beautiful......thank you for letting me see her and sharing.....
Connie, I've been watching for news about Lexi. I'm so sorry to see that the change so many have been hoping and praying for hasn't happened so far. You're not alone in those prayers for Lexi. My heart goes out to you, and Lexi continues to remain in my thoughts.
Oh Man! I can't imagine how difficult it was for you to have to type that update for us. [[[[Connie]]]]
I was a little concerned that no news might be bad news I was so hoping she would become more responsive. I do know one thing, she would respond to you if she could.
I know you mentioned not wanting her to go through certain situations, I do believe your type of love is self-sacrificing, since it puts what is best for Lexi above what the family desires.
Losing someone so beloved and cherished is unimaginable! How smart you were to make sure her last memories were of being with family at Disneyland.
You will still do everything possible to the very last minute, which is totally expected. Lexi has been with a truly loving family and I think it is what enabled her to stay as strong as her little body could permit.
I'll be awaiting any brief reply you can make in the days ahead. I know they will be hard to write, so let me just thank you in advance for keeping us all well informed.
Sincerely,
Dar
Oh Connie what a heart breaking update. The hardest thing is to understand and accept Gods plans. As always continued prayers and good thoughts.
Strength to you and the family. Here is hoping with all my heart that you will have better news to share in the next few days.
Continued prayers and good thoughts for Lexi, Connie and the family.
I can't even begin to tell you of the emotional roller coaster we have been on the past few days. It is too much to go into right now, but I will update more later. Right now, we are waiting for results of an MRI done yesterday (that we had to ask for). We are gathering information in order to make an informed decision about Lexi's actual condition. To do that, we are seeking a second opinion from outside this particular hospital group, though Lexi is still in ICU at the same hospital. In order for my daughter, and really all of us, to be at peace with our decisions, we know we have to have all the options available. We need to make sure that we have exhausted all avenues and that there is truly no hope for Lexi to live on in this world.
The only thing you can do Connie. I understand your need to be 100% sure of 'what next'. I hope all concerned (medical staff) also put your needs and wishes first, without question, and are fully supportive of the whole family.
I'm sure you will all find your way, you're clearly united and fighting for Lexi. Your family remain in my thoughts.
That makes total sense to me Connie. Doing all you can and covering all the bases is the only way you will be able to deal with this situation with no unnecessary guilt. I am sure your support is comforting to your daughter who is relying on her mom's strength now more than ever.
Thoughts and prayers going out your way. Like my dad used to say "Never Give Up!!!". We are here for you.
Hello Friend! Thinking about you and your family hoping Lexi is holding her own. Just wanted to say good morning.
Lexi had a trach today. We decided to move forward and give Lexi a chance at life. Lexi had surgery for a trach today and did well. Last week on Thursday, Lexi was not moving at all and the ICU doc, ICU nurse practitioner, an oncologist, a palliative care doc and several social workers called my daughter into a meeting she did not know about in advance, that the father was not invited to (and that I would have attended had I known it was going to happen -- her aunt was there, but not involved in the decision making). She was told that Lexi was not in a coma, but in a “vegetative state” and would not ever get any better than she was at that moment. She was asked if she was holding onto Lexi “for selfish reasons.” She felt pressured, ambushed and was hysterical after the meeting.
I immediately drove the ½ hour to be with her. I asked her where the experts were (the neurosurgeons who operated on Lexi the first time and who did the shunt a bit over a week ago or even a neurologist -- someone who was a brain specialist). A neurologist came in later, after we requested one, after a 5 minute exam, agreed that she was in a “vegetative state” and that she had 0% chance of any improvement. We agreed to remove Lexi’s vent out on Monday after the NP told my daughter that if she didn’t make a decision, they “would make one for her.” During the weekend, after prayer, my daughter changed her mind and decided to get a second opinion before removing the vent.
Monday morning, Lexi’s neurosurgeons came in and were surprised that we had been told she was in a vegetative state. They both agreed that they would never make that diagnosis unless a year had passed. There is no actual way to diagnose a vegetative state. Upon my asking if they would move forward with the trach if it were their child, one of the neurosurgeon’s said he would. The other is childless and did not feel qualified to answer. We decided to move forward.
In the meantime, not only has Lexi started to move more (showing a bit of improvement) the ICU doc on this week (they rotate) tells us that there has been success with using Ritalin (which she is now on). As you can see, the other doc did not give us that option, just wanted us to let Lexi go. I have no idea why he was so adamant that we let Lexi go without giving her a chance. Can you imagine pulling life support and then finding out that there were options after all that were not tried? How could a grieving parent cope with that?
Lexi still has a brain tumor that we are not treating unless she shows considerable progress cognitively. That takes the burden of a life and death decision from my daughter’s shoulders and puts it where it belongs -- in God’s hands.
Connie, I've been watching over the last several days, wondering how things have been going for Lexi. (Who could help but keep hoping things might turn around..). I was just getting ready to leave the PC for the night when I saw this. What an unspeakable ordeal for Lexi's Mom and you and other family members. Someone close to me had to make that decision Lexi's Mom has been faced with. It wasn't a long illness. It was a sudden one. Even when it was a family member, I knew there was no way I could possibly imagine what they were going through. It was, without a doubt, the worst thing I ever went through in my life, even though the child was a family member's. I've always wondered if, maybe, doctors were too quick to recommend the decision they did.
I don't have any grandchildren, and the toddler I mentioned wasn't my own; so I don't pretend to have a clue about what you've been going through. I know how horrible the whole thing with the family member was for me and my husband, though.. I guess that's why I thought, maybe, there was some point in just trying to say something here.
For what it's worth, I think Lexi's Mom and you are going with what seems right, based on the information you have for now. It seems wise, to me, that you go with your own "gut". Time and events will probably be your guide as things continue to unfold.
I feel pretty uncomfortable even presuming to try to say anything here, because the situation is one that makes a person feel really unworthy of making any comments. I just wanted to say that much before returning to "my place" as someone who doesn't personally know Lexi, her Mom, or you. In the meantime (and for what it's worth), I'm going to keep hoping for that miracle for Lexi. Warmest thoughts remain with you and your daughter.
Thanks, Lisa. I feel the comfort and sympathy that you are trying to convey. So many people don't say anything because they don't know what to say. Dar of Jen's Solitude taught me that saying something is always the better option and I appreciate your effort so much.
We felt that two weeks just wasn't enough time for them to make such a diagnosis and it wasn't giving Lexi a chance to wake up. We've all heard that many people remain in a coma longer than that. We know that the doc and the others were looking at the bigger picture, that is, that on top of the coma and any damage the hemorhage may have caused (which is impossible to determine until she wakes up), that she does have cancer. The end result may be the same, but Lexi is not in discomfort now and, above all, my daughter needs to be at peace with her decisions.
I firmly believe that the doctors overstepped. Instead of giving my daughter the information and allowing her to make an informed decision, they were trying to influence that decision. That made me angry and I have had to wrestle with my feelings all week. That is why I was unable to write about it before now.
We fired the palliative care team. They are supposed to be there for support and my daughter certainly didn't get that from them. We also fired the oncologist. Why have an oncologist stopping in every day if cancer treatment is currently not on the table? We let them know that we didn't want all those people (who had been in the meeting), who we felt were basically glomming on to the case for the $$ and that we only wanted the doctors and support staff who were necessary to deal with Lexi's current condition and any other conditions that may occur. I think, at this point, they realize that they overstepped and that we only look to them for information, not for decisions.
Good for you and great for Lexi! Exactly the bold steps to take. I am in awe of this strength and justice. Prayers still going up for Lexi and you all.
Oh, Connie, you and Lexi and all of you have been in my thoughts and prayers all week long. Thank you for providing this update. Please always remember that there are people all over the world lifting you all up. We don't know what the outcome will be, but I am so grateful, as I know you are, that you had the opportunity to get other opinions and to make a more informed decision about the immediate steps to take. We'll continue to pray and trust God to work for good.
{([{([Love and hugs])}])}
I do remember that there are many people who love Lexi and who do not even know her. That gives me comfort in many ways and renewed faith in God and in people.
The first two cards that we received for Lexi were from Hubbers who have never met our darling Lexi. We have them hanging on the wall in her room. Ironically, we have family members who have never acknowledged Lexi's condition at all. For the most part, I know it is just as Lisa said she felt, a bit uncomfortable. Many people just do not know what to say. I say to those people who call (and that is the first thing they say....) that they do not have to say anything. Calling, or as is the case here, writing a line, is good enough. It means everything to me.
Connie, I don't even know Lexi, but I love her with compassion. She is a strong, special little girl. God will continue to work a miracle in her life. Look at what God has already done. I pray God will bless you with new strength everyday. Be encouraged and hang in there.
Connie, my heart goes out to you and your family so much. I try to imagine, and I can't believe a 'medical' team could ask a mother if she was hanging on for 'selfish' reasons!!
It sounds like a wise choice to fire that team of what is so wrong with our medical system today! It sounds encouraging that Lexi is responding after taking ritalin. She sure is a little fighter, isn't she? Know that many of us think of you and your family often and are cheering for a breakthrough for Lexi. xo
I agree with everything you say here, rebekahELLE.
Those docs sure have rocks where others have a heart. They were off playing cards instead of taking compassion lessons.
I can not imagine anything harder than having to make the kind of decision your poor daughter has to make.
Lexi, you and your family are in my thoughts and prayers.
Don't forget to take care of you and your daughter too. Lexi will need you at your best when she awakens.
Wow, no wonder it took you awhile to update. I would be beyond furious. It is not hard enough on your daughter with her baby in such a critical state???? They decide to tell her that kind of news without her mother being present? It is obvious your daughter has inherited her strength and reliable common sense from you. The three of you are all fighters and never say never.
I'm so glad you daughter thought to ask what the doctor would do if it were his daughter. We did the same thing with my mom. I remember the question actually made our doctor tear up as she told us what she would do. Those are the doctors that deserve to be by Lexi's bedside, IMO.
Now that you have the right team in place and the weight of such a decision has been removed from your daughter, the responsibility will not be an unbearable weight for her to bear.
Connie, thanks again for the update. May the God of love and peace be with you all and may nothing separate you from his love. (Romans 8:35-39)
Love you,
Dar
Connie thinking of you, your daughter and of course little Lexi and sending you lots of good thoughts and hopes for a good night.
Ongoing prayers from a big crowd. May He give you all the wisdom and strength that you need in the coming days.
Lexi is off life support! After pre-determining that she could most likely breathe on her own, Lexi was removed from the ventilator. She is still on 25% oxygen (room air is 21%). She has been off for several hours and all her vital signs are fine. The doc came in and changed her trach and removed the stitches. The nurse came in and made me learn how to suction the trach. We will also have to learn how to change the trach and everything else that goes with it.
God sure does have a sense of humor. I have always said I never could be a nurse, due to being born with a weak stomach. I am being paid back tenfold (and more!) for laughing and giving my daughter that second bite of cottage cheese that made her gag when she was a baby....God knows I will do anything for Lexi, whatever it takes, so I will change that trach. She is stable now (though still comatose) and we will probably take her home in a week or so, after we learn everything we need to know and get equipment, etc., in place that we will need. We are still praying for that miracle and leaving the rest up to God.
Now THAT'S the God I know - Hallelujah! I am rejoicing with you now. //|||/|/|\\ \\\\\//////\/\/\/\/\/\/ (dancing feet).
And I do hear Him laughing sometimes.
Prayers still going up with everyone elses' here.
Patty
Wonderful news Connie! I will be so glad when she is back home and settled. There is never a doubt that you will always do what you can do to help her. There isn't a trach tube invented that can stop you! (smile) Thanks so much for the update.
Hi Connie. I am so happy to hear the great news. I am sure you will learn all you need to know to take good care of little Lexi before bringing her home. God is Great!
Being at home surrounded by the familiar sounds and smells can only help to get little princess Lexi out of her sleeping beauty mode.
Thanks for the update.
We'll keep on with our prayers and send you and Lexi a giant sized bear hug.
Oh that's great news! I think Lexi would love to go home by now. Still keeping Lexi in my prayers.
Prayers and good thoughts coming your way. Hope things are going well.
by Connie Smith 13 years ago
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