Ashley's Story

She will leave fingerprints all over your heart

11/04/2007

Avoidance

Truth? Plain and simple? I have avoided writing all day. Each time I sat down to attempt writing something I would end up walking away from it. There are days when I hurt. Thats all there is to it. Today was one of those days. My heart hurt more than I could share until I worked through at least a little of it.

Our day began with the realization that we are not trusted. That hurts! I wish it didn't, but it does. It doesn't hurt a little bit. It hurts a lot! My heart was injured by words that were said that made me realize this is what is going on. During rounds this morning I was told for the first time since arriving back in Omaha that we would not be allowed to take Ashley Kate home upon discharge from the hospital. I was stunned. We were told that we would have to stay in Omaha so they could keep an eye on Ash and that she would ultimately decide when we were allowed to go home based on how she does. The ugly truth is that they do not trust us to care for her in Texas. I was told, "Its not you. Its nothing personal." Try explaining that one to my heart. It doesn't work. I already tried. If it wasn't personal in the beginning, it has now become personal to this mom's heart.

I feel as though I am being treated like I am incompetent. I assure you when it comes to Ashley Kate that I am not. I have worked very, very hard to take care of this sweet baby. I have more medical "stuff" crammed into my head then you can imagine. I love her more than I love myself and I would never put her life in jeopardy.


I have cried buckets of tears today as Dave tried to calm me and comfort me over the phone. My heart hurts and I wish I wasn't an emotional girl on days like this. I wish words and attitudes didn't sting, but they do. I'm not tough. I don't know how to be combative. I don't know how to challenge others. I try to be prepared to ask questions each morning so that I can make the most of the few minutes we are given each day with our team of doctors, but this morning I was stunned. I could not respond. All I could do was politely say "Thank You" and close the door. Then the tears came like there was no tomorrow and I have battled them all day long.

"Pray about it". I can hear it now. My answer? I am trying, but there are days when the words do not come and all I can do is surrender my tears knowing that He collects them and understands without me uttering an intelligent word. Its been one of those attempts today.

Ashley has not had a good day herself which only adds to my tears. We both cried a lot today. She struggled with a low fever for most of today, a cough(which brought on lots of vomiting), a runny nose, sneezing, and all over achiness. She just didn't feel like being held or touched or played with or anything. She didn't feel like being left alone either. Basically she was miserable all day long. The only encouraging thing that happened is that her feeds were increased by 5 more making us only 15 away from full feeds. My only concern with this is her constant vomiting issue. Why is she doing this?

At this time she is in her crib finally sleeping soundly, and I assure you she is beautiful. I love to look on her face with those long lashes, tiny nose, rosy cheeks, and pouty little lips. I wish I could share a picture with you , but my camera batteries have died and I have no way to get out to replace them. She looks so peaceful for the first time all day, and it does my heart good to see her resting.

I wish I hadn't avoided her journal all day. I should have allowed myself to put it all out there earlier. I am already feeling the burden getting lighter. Maybe its because the 9:00 hour has come and many of you are praying. Whatever it is I know I will rest easier now that I have opened it up, laid it out there, and allowed myself to admit that today was really, really tough. Some days are more emotionally draining than others and today was definitely one of them. My head is pounding and my eyes are burning. I'm feeling empty and sometimes that is a good place to get to.

Thanks for listening and allowing me to be sad. I know many of you will struggle trying to understand the place I am in today and thats ok. Dave is struggling with it because he does live in the "land of daisies and rainbows." I struggle with it because I know its wrong to allow myself to stay this way. Trust me when I tell you that I am working my way out of it. It has just taken me all day to begin. I love you guys and hope you have a peaceful night. Good night. Trish

Edited:
I will directly respond to one of the comments because it is misleading. Please allow me to clear something up. To imply that I would not LET you put oxygen on Ashley for 11hours is mistaken. It had NOTHING to do with not wanting her to have oxygen. That is ridiculous! As soon as someone came up with a way that would work for Ashley we did it. She was not tolerating a cannula or a mask. Our best option for allowing her to breathe in the mean time was holding the oxygen on her and that is exactly what I and two very precious friends did that day. It has NOTHING to do with not allowing it or NOT trusting our medical staff. Please don't imply that it does. That is a misunderstanding that can not be allowed. I would NEVER deny Ashley ANYTHING that she needed. Please know that!

48 Comments:

At 9:42 PM , Blogger Sunshine said...

Oh Trish I am SO sorry. I will be praying and I wish that I could hug you! My prayers instead will go up on your behalf! Sunshine

 
At 9:44 PM , Anonymous Anonymous said...

I am so sorry my friend that you are hurting so. I don't have any magic words to make you feel better - but please know you will be held tightly in my thoughts and prayers tonight. Wish I could be there. Lou Ann

 
At 9:47 PM , Anonymous Anonymous said...

Trish, Some days the road ahead seems so long doesn't it, and we have no idea if the end of it even exists. Trust me when I say I understand and know how it feels to be told something completely opposite of what you hoped to hear by a doctor! There is an end to the road you, your family ,and Ashley are traveling and God knows exactly how long it will take to get there. I read a quote today by Max Lucado that I thought you might like to hear: "God's job is to fight. Our job is to trust. Just trust. Not direct. Or question. Or yank the steering wheel out of his hands. It is our job to pray and wait. Nothing more is necessary. Nothing more is needed." This verse also went with the quote: "You need to remain calm; the Lord will fight for you"(Ex.14:14). That quote and verse meant a lot to my own trouble heart and so I thought maybe it would help your troubled heart! Take care, we are still praying!!

 
At 9:49 PM , Anonymous Anonymous said...

Oh Trish, you have every right to be sad and lonely and feel emotional; after all, you're going through so much and I know it's hard especially on the weekends around there. Please know that there truly are many of us who are "praying you through all this" and praying Ash through it, too and God has not shut His ears. He is listening and He is caring and loving you two more than you will ever know! I'm thankful for all those who are joining in prayer of unity at 9 each night and thankful that you are experiencing the "rest in God" through all those prayers. Isn't He good, even on the bad days? I love you two and the family back here, too and my prayers will continue day and night. Praying tomorrow will be better and brighter than today and that Ashley will stop the vomiting, sneezing, coughing and that she will feel much, much better. I know it's tough, but hang in there; you CAN do it! - Love and Hugs, Grandma

 
At 9:49 PM , Blogger Holly said...

And on mountain time...nine o clack is almost here. So know that. Many are in this with you...we are praying, when the burdens rise and trouble comes. We are asking God on your behalf to change this and do a miracle. The Smiths love you all and pray for Him to embrace you and hold you steady and give you peace unexplainable.
Love,
Holly

 
At 10:03 PM , Anonymous Anonymous said...

I am praying for you, and Ashley.
Beth

 
At 10:09 PM , Anonymous Anonymous said...

Trish-I am so sorry you have to endure so much! It's OK to be sad. You have so much going on. My heart aches for you at this hour. Thank you for your honesty. Please allow the Lord to wrap His arms around you and comfort you. Yes, I know how it is when you can't pray and just cry.

I love you, Sister. My prayers are with you every single day!

Shari

 
At 10:18 PM , Blogger Gretchen said...

Trish, I ache for you. I wish there was something tangible I could do for you. I guess the intangible will have do suffice. But, He hears, my friend. He hears.

much love to an amazing mom,
Gretchen

 
At 10:19 PM , Blogger Unknown said...

Praying for you Trish. You have a right to hurt and sad, but God will get you through this rough time. Praying Ash will stop vomiting and be Healed. We love you and your family and are praying, praying, praying. God bless and sleep well.

 
At 10:22 PM , Anonymous Anonymous said...

My mom tears are with you tonight. How devastated I would be in your place. I would cry and cry all day too. What mom wouldn't? You cannot be perfect in the midst of this. You gotta be real...you are real! God made a mother's heart and the constant tugging of being there and wanting to be home. The ups and downs that every day brings you. The fatigue, the fussiness, the interruptions, personality clashes, all those "fun" hospital conditions are draining enough for anyone. Then the light at the end of the tunnel is snuffed out this morning. So you re-group, you mourn, you hurt...Its all normal. That's were we come in to lift you and dear Ashley to our Father. The Keeper of your Heart, who can revive you, comfort you, give you peace, you need that! We got your back Trish! Sleep tight tomorrow is a new day, Colleen

 
At 10:27 PM , Anonymous Anonymous said...

I feel a bit ignorant for asking, but how can a hospital dictate where you go when you are discharged? I was under the impression that discharge meant that they are letting you go. Please, explain.

 
At 10:30 PM , Blogger Barbie @ Mamaology said...

Trish I am so sorry. It must be really lonely on days like today. May the Lord bless you with His presence! May you be filled with His peace and have a restful night of sleep.

 
At 10:48 PM , Anonymous Anonymous said...

I am sorry your heart is hurting. I know you are sad and offended. But also understand the medical team. You stood by her crib for 11 hrs holding oxygen to her face before you would let us put oxygen on her. To them that perceives distrust for us, the team and RN's. You were upset or seem bothered if we needed to assess her, do vitals etc. If that is the case in Nebraska whose to say you would take her in Texas as soon as should or would you try to manage it at home? That is the teams fear and it is very real because many patients don't make it back to Nebraska because they are too sick. So please trust people and God to take care of her. You are her mom but we are medical professionals. Please sit back, relax and enjoy her as much as you can as her MOM.

 
At 11:07 PM , Blogger Rachael said...

prayin for ya

 
At 11:21 PM , Anonymous Anonymous said...

Trish,
I kept checking the blog today, and I felt like something was wrong when you weren't adding anything new. Just know, your family was in my prayers today everytime I hit the blog and found nothing new. So, even when you don't have the strength and energy to post, please know there are people all over the place, some who you know but many you don't, lifting you and your family into God's hands. Rest now. Praying for peace.
~Hugs~
Jill in Indiana, PA

 
At 11:23 PM , Anonymous Anonymous said...

Some days are more difficult than others- you are so positive at times when most of us wouldn't be. You deserve a sad day. I'm praying that tomorrow is filled with encouraging news. I'm sure todays comments and realizations were heartbreaking. However, I'm sure those doctors trust you immensely- your medical knowledge and your commitment to your daughter couldn't possibly be overlooked. You are an AWESOME mom. I'm sure they didn't mean to imply that they don't trust you. No one cares for your daughter like you do.

Megan

 
At 11:27 PM , Anonymous Anonymous said...

Please sorry for the previous post. Forgive me God and pray for everyone involved. Nobody means to hurt anyone's feelings. We all just want to trust each other and respect each other. You are a great mom the best mom for Ashley. Just forgive our frustrations.

 
At 11:33 PM , Anonymous Anonymous said...

Seriously, a mother who would hold oxygen to her daughter's face for 11 hours is not the kind who should be questioned. I totally understand your frustration after reading another post below. How can they paint you in a bad light after all you do for Ashley. I understand you're not looking for any "awards", but to say they don't trust you is a slap in the face. I'm so discouraged to hear that the medical staff ANYWHERE would frown upon the love and commitment you show toward Ashley.
I'm sure there are days when you wish the doctors and nurses could "walk a mile" in your shoes....as a parent. Hang in there. Megan (again!)

 
At 12:10 AM , Anonymous Anonymous said...

Sorry about your bad day....Forgive and let your heart be at peace

 
At 12:41 AM , Blogger Cathy Fry said...

Trish,

It's okay that you have cried buckets of tears today, even JESUS Wept! You don't have to be tough all the time you are human, let Jesus carry you right now, He's the tough guy, leave it in His hands. You are an amazing woman Trish, keep loving on that little pickle she is worth every bit of the love you give her. Hang in there and rest in His arms. He wants to hold you for a little while, and rock his little girl. Hope you have a restful sleep and remember tomorrow is a new day in Christ.

 
At 2:56 AM , Anonymous Anonymous said...

You are a wonderful mom. You love that baby with God-given love for her and your commitment to her speaks for itself. I am sure the medical team is trying to look out for her best, and I am so sorry it is so painful and difficult right now. I so appreciate the extra vigilance you demonstrate for your child, and I hope you will remain confident in your instincts. If you have to stay in Omaha for a little while, it will be part of the journey, and God will have a purpose in even that. I am so sorry that it hurts so badly and that this chapter of Ashley's and your family's life seems so endless.
Praying for you, and knowing that praying for yourself can sometimes grow hard; remember that His Spirit intervenes for You before our Father.

 
At 3:26 AM , Anonymous Anonymous said...

Trish,

I am so very sorry to hear what has gone on today! Colleen said it all in her post!! I so do agree with her! I am praying for you as always..praying for you to find the well needed peace in your heart from this horrible day! My husband always tells me "tomorrow is a new day" When we get rest it helps to renew our minds and our bodies so that we can take on the challenges of the new day! It also allows us to wake up with a new outlook on life!
I pray for Ashley's speedy recovery. I pray that this will all come to pass! I'm not sure of exactly what is going on between you and the medical team, however, I also was under the impression that "discharging" someone from the hospital meant they could go home! I do not understand how they can tell you where you can go afterwards. I have a feeling that this will all come to pass. That you will get whatever it is that is going on between you and the medical staff worked out and that you will be able to go home with Ashley. This is my prayer for you today. That and my usual prayers for you and your family. For good health and well being for all of you.
To everyone: I am also keeping you all in my prayers too! I don't know any of you, but I pray every day for all of you!
Trish you couldn't ask for a better support group!! Such wonderful people reading this blog! Just an awesome group all the way around. Have a great day! I know tomorrow will be better. One day at a time!
**hugzzzz**

 
At 4:09 AM , Anonymous Anonymous said...

I woke up and couldn't go back to sleep and went I went to bed you had not posted. Now I know why I woke up. I am praying for you honey and as your sister in the Lord, please know that you are so loved and have your "own team" of prayer warriors praying for you.

I know it is the Lord's battle, and not ours, but in the medical profession, to post something like this medical professional did should be brought before the Hospital board. This is totally out of line and I do pray that you find out the medical professional that commented and that she is held accountable for passing that line.

And we know that no matter what you are hearing from the "professionals" we know that our trust is in the Lord and we walk by FAITH and not by sight, knowing that the Lord is able to change yours and Ashley's current situation in one split second. Nothing is impossible. Don't feel defeated, You can do ALL THINGS through Christ who gives you the strength!

May you feel EMPOWERED to do what you need to today to address this issue. Put on the full armour of God.

HUGS, hugs and more hugs and always PRAYERS!

Cheryl

 
At 4:18 AM , Blogger Cheryl Jones said...

I am the one that just posted above and I do hope so much that you were able to get some rest tonight after all you had been through. I just hope so much you know how much we all care for you and how we hurt when you do.
Though we have never met, you sister in the Lord,
Cheryl

 
At 5:40 AM , Anonymous Anonymous said...

I'm praying for you!

 
At 5:53 AM , Anonymous Anonymous said...

Hey Trish,

Don't know how much I can help, but I want to try. Way back when just 3 days after our Nick was transplanted, the Omaha docs called ME in for a "conference." They said that it was too hard for the staff to take care of Nick because I was always being attentive, too attentive. The staff had complained of this, saying they felt bad as they were not trusted by ME to do their jobs. The Omaha docs further went on to suggest that I get counseling for my issues, and to "back off." I understand your hurt, anger and frustration. What many who read this blog might not know is the amount of medical care that is necessary to care for kids like Ash and Nick. It is a full time, need to be very clear headed, occupation. There is no such thing as a quick trip to a store or an average day. Our emergency kit filled two suitcases. How they have made you feel is horrible. But I am not sure they meant to make you feel that way. From their perspective, they only watch out for Ash and the graft, everything else is just periphery. You on the other hand, watch out for her comfort (they could care less how many attempts it takes to start an IV line), her emotional health, her happiness, the emotions YOU KNOW she is dealing with because you are dealing with them (like missing the family). There is noting wrong with the way you are feeling. There is just a huge disconnect between what you want to give her (normalcy, every day a happy one) and what this illness allows her to have. I wish that HIPPA laws were not what they are, because I KNOW there are many, many moms like you -- and those lucky kids know what it is to be loved. Please, do not let this take the wind out of your sails. You are doing a remarkable job, and Ashley is the better for it. (You all know that medical is only a part of it all.) You should not change a single thing about the way you are advocating for her. Everything else will work itself out.
M.

 
At 5:57 AM , Anonymous Anonymous said...

I'm praying for you as you deal with this heartache. Your love for Ashley is deeper than anything else, and it has brought her this far. Keep loving her and keep trusting HIM. We will keep praying for all of you!

 
At 6:46 AM , Blogger Carey said...

Praying for you today!

 
At 6:49 AM , Blogger camille said...

Trish,
Thinking of you and praying for you. Hoping today is a better one. I so wish you could take your sweet baby home.

 
At 6:59 AM , Blogger Dawn said...

Trish,
I wish I had some great words of wisdom for you, but I don't. Please just know that prayers are going up for you and for the team in Omaha, as you seek to find middle ground.
d

 
At 7:00 AM , Anonymous Anonymous said...

We are praying for you.
I am very bothered that the post was written about the oxygen.
That just shows what a wonderful mother you are!! And, you are giving her the most precious gift to her health-love.
After being in a hospital as long as you have, of course any mother would be upset at more poking to their daughter. That is not mistrust on a mothers part, but again, love for their child. Of course you will take care of her and do anything and everything to help her.

I think you should get legal counsel -they cannot tell you where to stay.

Hope & pray God will awaken their eyes . Hope you get some rest, and know we are praying.

Lee

 
At 7:26 AM , Anonymous Anonymous said...

Dear Dave and Trish,

After reading this post, I am quite concerned about how the doctors are viewing Trish. Please take this as a warning since I have been there myself with my own child - the doctors may think Trish has MSBP. Once a doctor or set of nurses suspects this syndrome, it is very hard to get them to see it any other way.

If, in fact, the doctors told you "this is not about trust" than believe me, it is ALL about trust.

Please readers, do NOT think for one second I think Trish has this! Nothing could be farther from my view of Trish. She is the best mom I have ever known, seriously. She has made me a better mom.

But doctors begin to suspect things they should not when an illness drags. I was there last year with my child - Thank God my child got better within a couple months and has remained that way. But it took a move and a new state and a new set of doctors to make me feel like I could take my child into see a doctor again.

Please look into this and see what you and Dave can do to make sure the doctors are not going into a MSBP type of rabbit hole.

I am praying so much for you and I will also pray that the doctors change their mind and let you and Ashley go home to TX soon so that you can shower her with all of the motherly love you can.
http://www.selfhelpmagazine.com/articles/parenting/hsmun.html

http://www.bullyonline.org/workbully/munchaus.htm

 
At 7:32 AM , Blogger KimberlyDi said...

I'm not her mom so I don't take things personal. I've been away from the internet since Wednesday and all I can focus on is that Ashley might get to leave the hospital? Even if they want her to stay close for awhile, that is an amazing thing. Difficult for you, yes. Difficult for your family, definately. The kids will be out of school for the holidays. They can come to you. Surely your husband will be off for Christmas too. Home is wherever all of you are together.

Leaving the hospital is a huge step towards going home. It will be a challenge but I'm praying that the Lord will give you the strength to handle this situation.

You know, going back home during the holidays may not be the best situation. It sounds like there's so much that you normally do to get the home ready for the holidays. Maybe the Lord does have his hand in this, keeping your focus 100% on Ashley. Or maybe the Lord is taking care of you, knowing that you would try to do too much.

You're a wonderful mother. I believe in you.

 
At 7:33 AM , Blogger Jen L said...

I've been reading this blog for the last few weeks and my heart aches many days and it rejoices many days. As a RN I see the medical side but I don't see you as an intrusive mom, just as an involved mom. If I was taking care of Ashley I'd welcome your input. The 1st lesson we learned in nursing school was ALWAYS TRUST THE MOM!! You know your child better than anyone else. Don't let anyone tell you you're a bad mom. I hear your love for Ashley in every post. I hear your ache for Blake and Allie when they're far away. Your love for Dave is evident in how you speak of him. I only hope that if my family has to walk through what you're walking through I will do it with as much grace and strength as you are. May God bless you and lift you up today!

Hugs dear sister in Christ,
Jen

 
At 7:39 AM , Anonymous Anonymous said...

Hi Trish,

I live in sunny CA now and post a comment every so often when I read about little Ash. My heart stopped when I read this blog. I have to agree with the person who posted the links. These doctors are coming to conclusions about you that are not right. Of course, I am just reading about the doctors through your blog and not in person.

They deserve the HIGHEST praise for keeping Ashley alive through so many trying times. However, that does not mean they cannot error.

I think the previous person was trying to enlighten you about this illness.

http://en.wikipedia.org/wiki/Fabricated_or_Induced_Illness

Obviously, I do not think you have this! But doctors are told to look for signs of this.

I am praying very hard for you today as I start my work week. Your will be in my heart and prayers all day. Love, Pam

 
At 7:52 AM , Blogger Fiffer said...

Oh Trish I am so sorry. It is just absolutely hard for me to believe that ANYONE could question your care of Ashley. I would expect that they would be commending you and in awe of your devotion to this precious baby. So I can completely understand how your heart aches. And I will pray that somehow they can affirm you today as the wonderful mom that you are.

I do have a prayer request for your readers and I hope you don't mind me sharing it on your blog. Last night my 23-year old nephew Drew was in a dirtbike accident and is fighting for his life. He is a Godly kid and was just married to Lisa 4 months ago. I would appreciate prayers for them and if any of you have prayer chains you could put Drew on I would surely appreciate it. If anyone wants to be kept updated on Drew's condition you can email me at Fiffer@comcast.net. Thanks to all you prayer warriors out there.

Trish...I also want to say this to you. I keep thinking of "You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives." (Gen. 50:20) So the fact that a member of Ashley's medical team commented on your blog shows that they are reading it. And this medical professional will probably direct others to read what you are writing. And I truly believe that God will use the words you write to point to Him. You are planting seeds in people's lives through your words. So take heart and know that God will work this out for good!!

Love,
Martha

 
At 8:05 AM , Anonymous Anonymous said...

Trish,
Wow! So much going on. I'm sorry for the hard day. Please know that we all pray for you, and the Holy Spirit prays on our behalf when we are unable to come up with the words to speak!
Consider that being out of the hospital and just coming to check in will get Ashley away from the germs that will spread throughout the winter. I would see this as a blessing, perhaps you can get her out of the hospital sooner that you might have thought possible and then just keep her on your own for a short time in Omaha before bringing her home. It's away from the germs that is the biggest concern for her right now, then home after that!
Be strong for Ashley Kate, we know you can!
Marlain

 
At 8:06 AM , Blogger Ivey's Mom said...

Trish-
I wish I could be there with you. My heart will never overcome the pain and uncertainty of medical decisions, I still make them every day. I may be wrong, often I am. You and Dave are her parents. The decisions are yours, even the tough one, which you know too well. If your heart honestly knows that you CAN care for Ashley, so many miles away back in Texas, then challenge them. If you heart aches, and you know deep down that it is too much of a risk, then you will have the strength to endure the stay in Omaha. As hard and confusing this is, you KNOW the right decision. Ivey has always thrived and been more successful in our home and her doctors have always said that, and they have always pressed to get her home as soon as possible. Talk to her doctors. It is obvious that they love Ashley and YOU. You will get through this-you have no other choice. Know you have a friend and encourager here - you can have my strength today and anyday you need it.
Blessing always,
Gwen

 
At 8:21 AM , Anonymous Anonymous said...

Trish,
My heart hurts for you. Your plate is so full right now. Please try & rest knowing you are completely covered in prayer. I can't imagine the fear and hurt you are experiencing. I pray the Lord will give you peace today.
-Cari in Arkansas

 
At 8:32 AM , Anonymous Anonymous said...

Trish, I'm so sorry for what you're going through. I can't imagine having to be so far away from home for so long, and feeling like every light that pops up at the end of the tunnel gets snuffed out before you get there. That has to be incredibly disheartening.

I did want to say that I'd be careful about assigning an MbP suspicion to the motives of the medical staff. Having had a fairly close association with a family who dealt with this very issue (and whose daughter was convicted of it), I can't imagine they even think you fit the profile. I don't think they would ever presume you would intentionally harm Ashley. My guess is just that they tend more towards the intervention ASAP side, whereas you have more of a lets-wait-and-see-if-we-really-need-to-resort-to-that approach, such as with the drug you were (understandably! :-)) hesitant to put her back on. My guess is that knowing things could turn on a dime, they just don't want you two states away in case an ASAP intervention is imperative.

I have to believe it's not a matter of not trusting you, personally, but a matter of different medical philosophies, and concern about the distance. My guess about the "discharge" issue is that they know how badly you want and need some freedom from the hospital, and are trying to weigh that with the necessity of her actually being *in* the hospital with the concern that for a time, she not be three states away from the hospital, just in case.

Regardless, tho, it was not professional of the nurse (?) to have responded here, especially giving specific details about the O2, etc. She probably felt defensive, like "she" had personally been called on the carpet here. I think that is a reflection of her self-defensiveness, not of you trying to cast anyone in Omaha in a bad light. Anyone who has been through anything big on the medical front knows there will be times the medical staff sees a need to go one direction when the family sees a need to go another. It's just part of the process. For her to post here was uncalled for, and I do believe the hospital should be made aware of it. It casts a bad light on a team that I presume is truly working very hard and doing everything they believe is in Ashley's best interests. That's not fair to them for her to assign her perspective to all of them in an anonymous but public way, and I believe she should be called on it.

I have to think that given the fact that you got the best room in the place that her view is not the predominant one, so don't let a bad apple spoil the relationships you've worked hard to build there. It's too important for Ashley, and anyone who reads here knows she is your #1 priority.

I'll continue to pray for her and for you, that she's given healing and you are granted peace, as well as clarity about whom you can trust and who has a hidden agenda. You have too much on your plate to have to worry about personal politics, and that nurse should never have put you in this position here.

Brenda

 
At 9:18 AM , Blogger Michelle said...

Oh Trish, I am praying today will be a bright new day for you and Ashley. I pray for the medical staff to see what a great mom you are and that God would allow them to do just that. I will pray that light at the end of the tunnel will open wide today!!

Prayers, love and many blessings!
Michelle

 
At 9:26 AM , Anonymous Anonymous said...

Oh Trish I am so sorry you are going through this. I won't even try to tell you I know what you are going through...I don't...I couldn't imagine the pain you feel...the frustration. My heart also goes out to the medical team..I also pray for them daily...I'm sure that they are doing what they feel is best as are you....I can't imagine how many times they themselves have followed a little one through their struggles such as Ashley only to see them not pull through..I can only imagine how many times they have had their hearts broken..How many tears they have shed over those little lives...it takes a special person to do the work they do..and the way you speak of them they are so special....maybe they is why they are taking the steps they are....I totally agree that as a mother you would never ever deny her anything she needs....I also agree with you on the fact that you want to try everything possible first before always jumping to the "last resort" as far as they are concerned. What a horrible situation you are in...I pray that your family and her medical team...will continue to find the common ground to work together...I am so sorry that both sides are struggling with trust issues...when both sides have the very best intentions for Ashley...I pray that you guys will come across "neutral" ground and continue to work together...I know you so want to be home for the Holidays...how your heart must ache at the possibility of not being there...Just remember HE chose YOU....YOU can do this.....
Love and Hugs
Misty

 
At 9:30 AM , Anonymous Anonymous said...

Praying for forgiveness and let others know that you are a great mom!! You are very knowledgeable and trustworthy... I don't think the person or the team meant any harm. They did apologize and ask for forgiveness! To go after them would just do more harm to a person and God would not want us to hurt others.

"Let us therefore come boldly to the throne of grace, that we may obtain mercy and find grace to help in time of need." (Hebrews 4:16)

 
At 9:34 AM , Anonymous Anonymous said...

WE ARE PRAYING FOR YALL TODAY!!!

-Liberty University, Lynchburg VA-

 
At 10:26 AM , Anonymous Anonymous said...

Trish, I'm sorry that you and Ashley feel so tired and lonely. I can't imagine being in the hospital as long as you two have been. I was just thinking that the medical staff must be thinking of letting you out, or they wouldn't have said anything. I think you should take this as a positive. They've been telling you that you're not leaving, but now they are saying that you might leave but you just have to stay close by. This is actually good news - you'll be out of the hospital. I don't think it has anything to do with trust. I think they know, as we do, no one could have a better mom. They are actually saying that you can do what they are doing in a outside the hospital in a room close by. I think they trust you more than you know. Praying for you and for Ashley's recovery. Love, Stephanie

 
At 10:44 AM , Blogger missy said...

As a mom and a control freak (not saying that you are too, just know that I myself am!) I can't begin to imagine the hurt and frustration you feel!! I am praying so hard for you.

Now, I am not trying to confront the medical professional who posted above, but I do want to say that posting what she did here is highly unethical. She disclosed information (may it be true or not) that should be confidential. That is both shocking and illegal. Enough said.

Hang in there girl. It HAS to get better soon!!!

 
At 11:08 PM , Blogger Belle said...

I've been following your Ashley's story for only a short time now but have read the archives, etc. enough to know you and your husband and children were hand-picked by God to be Ashley's family. Rest in that knowledge and truth.


As for being discharged but told you can't go home ----- you can leave a hospital at any moment in time. All you have to do is sign a release AMA "Against Medical Advice". I would think if they are discharging Ashley they can't really tell you where you're allowed to go. Especially when you could in essence CHOOSE to leave the hospital at any time. In a day and age when there are tons of medical facilities and competition arises from these many choices, remember YOU are the one who gets to choose things such as this.... not the staff.

My daughter has a disability so we are very familiar with the whole medical environment. We are the ones as parents who decide which doctors actually get to take care of our children. Don't let anyone make you feel as though you are at their mercy -- whether by words or actions.

And whomever posted on this site from Ashley's medical team should definitely be reprimanded. I know there are always going to be nurses and doctors and techs that are not our favorites BUT when they cross a line it's very hard to uncross it. Especially when it comes to your child -- as you well know.

And it isn't that I'm an unforgiving person. Really! It's that I'm put here to protect and cherish and take care of my daughter and that's what I will do -- no matter what. I can tell it's what you do, too, Trish. And I don't even know you in person!!!

Please take care of yourself too. Get outside some each day as you can and as Ashley can tolerate.

Lastly, I have to say that I completely admire you for standing in one spot for 11 hours to hold oxygen to Ashley's face. What a labor of love.

 
At 1:43 PM , Anonymous Anonymous said...

Praying for forgiveness on everyone's part!! We are all only human. Sometimes misunderstandings can be so very hurtful! While I do agree with the person that said it was unethical for the staff to release information like they did....I also see it going deeper than that. Apparently there must be some sort of a friendship going on for them to even be posting at all, or to care enough to say they are sorry!
Gosh it's really too bad that we are human huh? Too bad that we cannot all be perfect everyday. I sure wish that I was. Since we aren't then this is what we have to deal with. Sometimes we just have to suck it up and move on. Sometimes we just have to forgive knowing that we weren't meant to be hurt....no matter who it is or what the situation. I'm sure we have all been deeply hurt by friends, co-workers, family. It can be extremely painful! My prayer here is for forgiveness on everyone's part so that little Ashley doesn't have to feel the pain that her mother's heart is feeling right now. So that she may spend what energy she does have on fighting to get better!! After all...Ashley is the main concern here right?
I pray for forgiveness and peace.

 

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