I'm not crazy
I just KNOW my baby and tonight I am telling them SOMETHING is wrong. I feel like I am slamming my head against a brick wall. If they don't listen to me I am going to lose it.
Ash's hands are peeling. Her right hand is hot and raw. She is losing all the skin off of her fingers and she has HUGE clumps, not a stand or two, but clumps of hair stuck to the skin. I can't bring myself to pull it off because I know how painful her little hand must be. Her abdomen is growing larger and larger by the hour so Dave and I started measuring it on our own. I have pictuers of the rash, measurements of her abdomen, clumps of hair. They will have to listen to me eventually. I have all the proof that she is sick. If I am told they are going to do a flat plate x-ray of her abdomen one more time I am going to scream. This will be the 5th one and it shows nothing. I want a CT scan today.
Hospital politics, especially at night, when the only one available is a resident who doesn't know what to do other than tell a parent it will have to wait until morning makes me crazy or angry or whatever you want to call it.
Ash has not slept all night. She is miserable. Her breathing is strained as she grunts and moans with the pain as well as fights the nausea. Only 2 hours and 20 more minutes until someone arrives that can actually do something. Sorry for venting, but its better to do it here on this blog than to lose my testimony. I can feel it may be coming to that.
posted by Ashley @ 5:32 AM
29 Comments:
You need to get a second opinion ASAP. Her life is in your hands. This transplant team may not know the signs of other illnesses. I am praying hard for all of you to find out what is wrong with her. Love, Pam
I pray that someone listens to you. A mother knows when her child is sick. There is a specific illness that is very rare that progresses like Ashley's has. I hope that the doctors will know what it is. God knows what is wrong with her. Even if these doctors do not, he will lead you to the one person who does know. I am sorry you have to watch her suffer like this. You are right, xrays do not show illness and disease. I will pray for an answer today. Sincerely, Jen
Vent away! You are not crazy. What IS crazy is to ignore the parents of a child like Ashley. Nobody knows her better, and you have not exactly been hysterical in the past. You Go, girl! We're praying for you.
Echoing Jen: you're her mom and you know something is wrong. That's all that matters.
Don't feel badly for venting. If I recall, King David did a lot of venting too ;-) Praying for your continued strength and peace (and that the doctors will GET A CLUE!)
Oh my goodness, what in the world?!!! I am praying for you so much. You are your child's advocate... remember that... you have every RIGHT to fight for her as long and hard as you need to. And we are here to listen to the venting... it's okay to be angry. This is a righteous anger over your daughter, an anger that will help you fight harder for her. I will be praying specifically for the doctors, your interactions with them, etc. I am thankful you have this blog to let your true feelings out when it may not be appropriate there. Hang in there, sweet one... I know you are, but I PRAY you can feel the prayers!!
Lord God, please give sweet Ashley a break!! We call on You to whisper in someone's ear the answer to this mystery illness! Please Lord, we trust You. Heal her. In JESUS' name, AMEN.
Trish,
This sounds SO SCAREY even for me and I am not there.
I am so thankful that Dave is there with you.
I am praying for a peace for you, not that you could be calm because you have to fight for Ashley, but that the Doctors will take a look at her this morning and act fast to figure this out.
I am praying for you early this morning.
Let Me pray for you right now...
Oh Lord please be with Ashley and her family. Give her Doctors wisdom in finding the cause of her sickness. Lead them to the source of the problems and give them ways to aid her body in fighting off the infection, if that is what is wrong. Give Ashley's little body strength to fight. And give her Mommy and Daddy wisdom and peace in this time. I pray all of this in Jesus name... Amen.
I will keep praying!
I know someone already mentioned Steven Johnson's Syndrome, but please mention this to your doctors. It is very rare but my father-in-law AND my best friends little boy both had it. It is caused by a reaction to medicine. It can be from antibiotics or even tylenol. You can take a medicine for 20 years and have no reaction, and then react the next time.
When you mentioned the peeling, it made me think of this again because this syndrome causes burns and peeling.
Mention it and see what they say. Both of my people recovered completely from it, and my father-in-law was very sick when he got it and still did fine.
I'm praying for you all.
I am praying for the doctors to see what they need to find. And for you all and Ashley, of course, as always. I am SO SO SO sorry. I wish I could say something comforting, but words can't help when your child is hurting I know. Lord, you know my heart. It's so often not pure. Please forgive of the sins we have discussed and be with Ashley to help her today. Please bring supernatural clarity of thought to David and Trish in their fatigue. Please calm Ashley's body to prevent suffering. Thank you for a milllion prayers answered already on her behalf! And thank you for listening to us ANYTIME we want to talk to you. For even being involved with us at all. Thank you for your sacrifice. Forgive for making that work so cliche. And please just be in this situation in a way that Trish and David and even Ashley, Lord, can percieve it. Please let them FEEL your comfort at this time. In Jesus precious and holy name.
This might be really out there but I know you are desparate. The Cleveland Clinic has an online second opinion that you can fill out and submit by email. They have a children's hospital and are very cutting edge. Maybe you just need a new prospective. Also, Rainbows Babies and Children's in Cleveland is one of the best in the nation and you may be able to contact them as they are a teaching hospital. They may be very interested in her case....VENT AWAY and prayers...Colleen
Let it all out!!! You are her voice!!!!
As a little kid I had scarlet fever... many of the symtoms are the same as Ashley's... the peeling skin is what made me think of it...I just remember my hands peeling. I just googled it and fever and nausea are part of it, too. Just a thought. Praying for you guys!
Kori
My heart breaks for you. Praying like the others that have posted here. I pray that by this time, you have gotten someone to listen to you and that while I'm typing this, they are figuring out what is wrong.
Praying for you! By now hopefully the doctors are in and are listening!
I don't know what it is, but I agree you have to get some help for her. I'm glad Dave is there with you to help with this. I'm sure that was tough for him to leave work to come with you - but this is surely the reason he did come, to help you!
Looking for good news from posts today!
Marlain
Oh, Trish, I am so sorry!
Before our son's surgery, a friend showed me a Readers Digest piece about a boy who'd had our son's same surgery and died because during the night, hospital workers werent't taking his mother seriously. That child had a reaction to a painkiller that is used as standard procedure after the operation our son had. It ate holes through his stomach and he bled to death.
The reason she showed me that piece was because as a result of that incident, laws were passed requiring a fully credentialed doctor to personally address concerns, even during the night, and even if a resident is on duty on the floor.
Our son did have complications in the night that scared me senseless, and while the resident was nice as can be... we did say the magic words, "We want to talk to a doctor NOW," and a doctor came within 15 minutes. He rather quickly identified a spinal fluid leak... and the nurse had assumed it was just normal post-op pain.
The next morning, a nurse said that was the correct thing to do, because we were our child's #1 advocate and as such, it was important for staff to take us seriously.
This was down the street at Children's, but I'd have to think your rights are exactly the same. Day or night, I believe you do have the right to insist on seeing someone more than just a resident. You may have already known all that, but in case you didn't, it's good to be armed with that particular right.
Her symptoms almost sound like scarlentina (scarletina?) - esp. the peeling fingers - but I believe that issue doesn't typically show up for several weeks after being "sick".
I'll continue to pray for all of you!
Brenda in N E
I am so sorry for Ashley to have to endure this and I am continuing to pray.
I am praying - oh I am SOOOOOOOOOOO sorry you guys are going through this. Sunshine
I don't know you guys, but I've been reading & praying for Ashley for about 2 months now. I'm praying for your little pickle. I will pray that God continues to give you strength during this hard & yucky trial & that He gives the doctors wisdom and compassion.
Love & prayers,
Brandi in PA
Has she had any vaccines lately? This could be an adverse reaction to vaccines.
Continuing to pray always for sweet Ashley... may God provide answers to all the questions regarding this horrible, strange illness soon. We love you all so very much. God Keep.
Praying hard, loving you all. So glad for all these suggestions. I pray the doctors will LISTEN to you and consider all that you suggest, and that God will give them wisdom and will give Ashley relief and healing. I know it's hard to be bold sometimes, but may God give you both the strength of your convictions to be bold today and in the days ahead for Ashley, and may the medical personnel react in the very best ways.
God so knew what He was doing when He put Ashley in our family : )
You're doing a great job.
My heart is absolutely breaking to see Ash like this - I've tried to call you but no answer. You know my prayers are going up constantly and God has all the answers - He will show us all in His time His mighty power once again. "He who began a good work in you is faithful to complete it!" I wish I could be there with you - if you need me there at any time, all you have to do is let me know and I'll be on the next flight, but for now I'm heading over to watch our sweet Allie on the soccer field. I've got my phone with me. I love you all so very, very much and I'm praying hard! Grandma
Oh Trish-My heart is just breaking for you! I hope and pray someone listens soon! Your poor baby! Know I am fasting and praying for you today! A Mother DOES know her child better than anyone. I know you are scared. Please do not feel bad for venting! I wish I could give you a HUGE hug! I love you and your precious girl!
Shari
Henoch Schonlein Purpura
Could this be the diagnosis?
We(at your local hospital) are all thinking of you all.
Love,
Ashley's nurses
I am so glad you have this blog. I looked up the S-J syndrome, and they definitely need to take that possibility seriously.
Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis sound so much like they could be possibilities, especially if she's been on the "cox-2 inhibitor Bextra, which is already linked to these disorders.
There are other drugs that have been linked to Stevens-Johnson Syndrome, and these include some other NSAIDS (non-steroid anti-inflammatory drugs), Allopurinol, Phenytoin, Carbamazepine, barbiturates, anticonvulsants, and sulfa antibiotics."
Praying for you all!
I'm praying!!!
Psalm 107:20 "He sent forth his word and healed them; he rescued them from the grave."
My heart is broken for you. I am praying they get it figured out and under control soon. Poor baby she looks so uncomfortable. Praying contantly! ~Chan~
Wow.
I just googled SJS, and those of you who have suggested it sound like you know exactly what you are talking about.
Trish, this site lists the symptoms and the progression of the disease, and it sounds so much like what you've been saying: http://www.emedicine.com/EMERG/topic555.htm
I remember your first post regarding this chapter for her... you said she was "yimpy." This disease starts with a general malaise, then a lack of interest in food/drink, GI issues, inability to void, and eventually the dermis and epidermis separating, resulting in skin sloughing. Truly, it sounds word for word like what you have described.
Brenda in NE
One of the main differences though, with those saying it is the SJS is that Ashley has been throwing up for days and days and it is not, from what I can tell, symtomatic of SJS.
Oh, this just sounds horrible. You are not crazy - keep pressing the doctors for more diagnostics. Have you ever heard of Kawasaki Disease? What you are describing are many of the symptoms of this disease. I don't know if the doctors have considered it. It occurred to me because I once treated a little boy who had suffered from this illness and he was very, very sick - he eventually had full recovery. Please keep posting updates. I am praying the doctors find out some answers SOON.
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