Just heard from Denisemomof4

[Georgiana Daniels]

Awful. :crying: she won't be going home today, and the nurses said she has to be free of a fever for 24 hours before she can go home. Her fever is still 104 and Motrin is only bringing it down to 101.7. She *feels* miserable today, far worse than yesterday. She slept 30 minutes last night.

 

The lab tech came to draw blood. Of course, two sticks and lots of fishing around later, it made dd VERY sick and dizzy. AND THEN THEY TELL ME THEY NEED CULTURES about half an hour later. Another blood draw is necessary. I told them they WILL NOT be tring to get blood from her again today. They can try tomorrow morning.

 

She just got another dose of Zofran so I hope her nausea goes away and she can finally EAT something!!!

 

apparently there's a horrible virus going around which causes nausea, vomiting, diarrhea (she had none), sore throat, cold. They told us the summer viruses are worse than the winter ones.:confused: we NEVER get sick during the summer.

 

I am so afraid for her to start Lymes treatment. Her appt. Is 9/10.

 

Faith, I saw your response to my other thread AFTER dd's blood draws. We will be insisting on heat for all blood draws in the future, and a VERY nice PICU nurse came to talk to dd. She is working all day today and tomorrow and she is the go to for difficlt blood draws. She uses heat! We will be requesting her to draw blood for cultures.

 

 

:grouphug::grouphug:

[Whereneverever]

Denise, she has lymes, too, right? Is she going to be getting iv abx for that? I would strongly consider having them place a picc line that she could use then, but you can also draw cultures from it as well as do medications. :grouphug::grouphug::grouphug:

[justLisa]

Thinking of you both:grouphug::grouphug: This is so hard on a mama

[Wildcat]

.

Edited January 6, 2023 by Wildcat

[Caroline]

Denise, I will have you and your dd in my thoughts. Please remember to take care of yourself during this time. Your dd needs you to keep your strength. I say this because I ended up in the hospital across the street on an IV when my dd was in the PICU with similar symptoms.

[Denisemomof4]

I am so sorry. Sometimes it is so hard to advocate for your child in the hospital. DD is a tough stick and would I would insist on the IV specialist team, I always got labeled as the "difficult" mother. But I just didn't care.

 

I am full of sympathy and empathy. I will be praying for you and your DD several times today.

 

I told the team she was a hard stick and I needed their BEST to draw her blood. The nurse rolled her eyes and told me EVERYONE is trained to do it. When that nurse and dd nearly vomited and passed out, they got another nurse. When the ER doc apologized, I told them their apology was meaningless and they should have listned to what I told them.

 

I am LIVID that HALF AN HOUR after a blood draw today they wanted to draw blood for cultures. NOPE! GO AWAY.

 

A PICU nurse I spoke to at length will be requested by me tomorrow and NOBODY else will be drawing dd's blood.

[Denisemomof4]

Denise, she has lymes, too, right? Is she going to be getting iv abx for that? I would strongly consider having them place a picc line that she could use then, but you can also draw cultures from it as well as do medications. :grouphug::grouphug::grouphug:

 

Excellent point. Thanks! I think her abx will be oral. There is NO WAY her body could handle them right now.

 

Theynare running lymes titres.:confused::confused::confused:

[Denisemomof4]

Denise, I will have you and your dd in my thoughts. Please remember to take care of yourself during this time. Your dd needs you to keep your strength. I say this because I ended up in the hospital across the street on an IV when my dd was in the PICU with similar symptoms.

 

I know. Thanks. And sorry for YOU!!!

 

I know I failed today. Dd is SO strong and SO rsilient. She was so very sick this morning as they were DIGGING AROUND in her arm. Mi had to walk out. I have never done that. When everyone left, dd cried and cried. She just does NOT do that! She told me that she hated her body. Then I could do nothing but cry with her. i usually am very strong for her but iy has been such a tough week all around.

:grouphug: to everyone. Thank you SO MUCH!!!

[Slartibartfast]

:grouphug:

 

I will keep her in my prayers.

[Denisemomof4]

Hopefully she will be much better by September.

 

I thought about coming to cheer you two up but if it is a virus dd and I are staying up here in Maine far far away from the virus. :D

 

You are SUCH a sweet lady!!!:grouphug: i really would have felt awful had you driven all this way.

 

They really don't know what is going on wi her. This is SO reminiscent of what haooened to her last March and she never fully recovered. The LLD did say that her body is orobably too tired from battling LD so it is weak. Yesterday she got a sore throat and her tonsils are fullmof pus.... So there is a viral component t it but her white blood cell count is totally normal.:confused:

 

I am getting here what I get to every single doctor she's seen, which is now 24 including the drs here. They are. :001_huh::confused::confused::confused:

:grouphug:

[Caroline]

I know. Thanks. And sorry for YOU!!!

 

I know I failed today. Dd is SO strong and SO rsilient. She was so very sick this morning as they were DIGGING AROUND in her arm. Mi had to walk out. I have never done that. When everyone left, dd cried and cried. She just does NOT do that! She told me that she hated her body. Then I could do nothing but cry with her. i usually am very strong for her but iy has been such a tough week all around.

:grouphug: to everyone. Thank you SO MUCH!!!

 

I didn't mean to make you feel like you failed. You certainly didn't fail. I just want you to eat some good food.

[Denisemomof4]

I didn't mean to make you feel like you failed. You certainly didn't fail. I just want you to eat some good food.

 

No! You didn't make me fail! I was upset at myself when I couldn't hold back my tears today. Dd was so frail and I wish I didn't start crying over it all..... It was not what you said! You, and everybody, have been so kind!!!

[Catwoman]

No! You didn't make me fail! I was upset at myself when I couldn't hold back my tears today. Dd was so frail and I wish I didn't start crying over it all..... It was not what you said! You, and everybody, have been so kind!!!

 

I see it differently, Denise. It's OK for your dd to see that you're upset and that you cry sometimes. You were crying with her, and maybe she really needed that. Maybe you both needed that. :grouphug::grouphug::grouphug:

 

And honestly, who among us wouldn't be frightened and worried, and feeling terribly helpless in your situation with your dd and the needles??? This isn't (thankfully) an every day occurrence for you -- you'd have to have a heart of stone not to have cried!

 

Don't expect yourself to be Brave Strong Mom all the time. Your dd doesn't need that. She just needs to know you love and support her and will protect her as best you can.

[Denisemomof4]

I didn't mean to make you feel like you failed. You certainly didn't fail. I just want you to eat some good food.

 

Omg!:lol: i totally missed in BOTH your responses that you're talking about food! :lol:

[Denisemomof4]

I see it differently, Denise. It's OK for your dd to see that you're upset and that you cry sometimes. You were crying with her, and maybe she really needed that. Maybe you both needed that. :grouphug::grouphug::grouphug:

 

And honestly, who among us wouldn't be frightened and worried, and feeling terribly helpless in your situation with your dd and the needles??? This isn't (thankfully) an every day occurrence for you -- you'd have to have a heart of stone not to have cried!

 

Don't expect yourself to be Brave Strong Mom all the time. Your dd doesn't need that. She just needs to know you love and support her and will protect her as best you can.

 

I KNOW you're right........

[DaffodilDreams]

Goodness! Hugs to you, Denise, and healing thoughts and prayers for your dd. I hope someone in that hospital will be able to figure out what's going on and send your girl on the road to recovery. That WTM compound is sounding better and better. That way, we'd all have tons of built-in support during such times! Wish we could do more to see you through this!

[Whereneverever]

Another thought, I make them do blood work via butterfly on my kids. They always insist a bigger needle is better but one of my dds has veins that just collapse. A PICU nurse should be good, if not demand someone from PICC or the iv team.

 

Just to warn you, blood cultures can be a lot of blood. I had them run not too long ago and it was terrible.

[Parrothead]

You are SUCH a sweet lady!!!:grouphug: i really would have felt awful had you driven all this way.

 

They really don't know what is going on wi her. This is SO reminiscent of what haooened to her last March and she never fully recovered. The LLD did say that her body is orobably too tired from battling LD so it is weak. Yesterday she got a sore throat and her tonsils are fullmof pus.... So there is a viral component t it but her white blood cell count is totally normal.:confused:

 

I am getting here what I get to every single doctor she's seen, which is now 24 including the drs here. They are. :001_huh::confused::confused::confused:

:grouphug:

:grouphug: Well, may be the Lyme titer is a good thing.

[KnitWit]

:grouphug::grouphug::grouphug::grouphug:

 

Continuing to pray here. I'm so sorry!!

[justamouse]

:grouphug:

[Denisemomof4]

I really thought dd was on the mend. I thought her fever had FINALLY broken.. Not so. 103.7. She is devastated because she really, really, really wants to go home. I waNt this too but am so afaid she will dehydrate again.

 

She was confused and hallucinated about seven hours ago. She didn't know where she was and she was crying uncontrollably. The confusion slowly got better but lasted about 45 minutes. Has anyone had this happen with an older kid? She did this when she was two with a high fever. Her temp measured 102 at the time. So not as high as it has been.

 

She finally ate tonight so I really thought the end was in sight. After not eating for five days, she had a cup of applesauce, two jello, a cup of mandarin orange segments, eight french fries....... All in one setting! Such a healthy diet.:tongue_smilie:

 

Although she felt well at the time, a coupke of times her legs turned purple and her knee caps were very dark like a plum. This happened twice yesterday. They are telling me it's her vasovagal syncope although we have never seen this before. Wen she was purple and mottling at admission they told me it was dehydration. She is obviously not dehydrated now. I don't think they know what it is. Also, sometimes she will just look like all of a sudden she has a very dark tan. Then it will go away. Has anyone ever experienced this before with themselves or their own kid. I don't know what to do anymore.

 

They are saying she has a virus.

 

Any input? Advice? Suggestions?

 

Thanks for being so kind everyone. You all are awesome!

Edited July 29, 2012 by Denisemomof4

[Pretty in Pink]

Denise, I'll pray for your dd. :grouphug:

[Starr]

I don't know anything about this but it sounds frightening from a parents perspective. A virus that keeps reoccurring? You might consider a vacation and ER drop in at Boston Children's. :grouphug:

[Denisemomof4]

I don't know anything about this but it sounds frightening from a parents perspective. A virus that keeps reoccurring? You might consider a vacation and ER drop in at Boston Children's. :grouphug:

 

I am labled as crazy over protective mama there because i kept wanting answers when her face was tur ing blue. Several doctors told me NOT TO WORRY and they regularly brush me off now. I have no confidence in that place.

 

I do like Dartmouth/Hitchcock but honestly don't know if even they can help us.

 

Has anyone ever signed someone out of a hospital whem drs didn't release? What happens? Because this is my KID I worry what could happen. Could i get into trouble.

[MomatHWTK]

Can you have her transferred directly to another hospital or have her regular doctor sign her out?

[Whereneverever]

I am labled as crazy over protective mama there because i kept wanting answers when her face was tur ing blue. Several doctors told me NOT TO WORRY and they regularly brush me off now. I have no confidence in that place.

 

I do like Dartmouth/Hitchcock but honestly don't know if even they can help us.

 

Has anyone ever signed someone out of a hospital whem drs didn't release? What happens? Because this is my KID I worry what could happen. Could i get into trouble.

 

Would you sign out to go home or to another hospital for another opinion? If you want to go somewhere else, you can call them and arrange a transfer. I have less experience with signing out AMA.

[Denisemomof4]

Can you have her transferred directly to another hospital or have her regular doctor sign her out?

 

The hospital I would take her to is about 1.5 hrs from here. I would take her. I don't know if they would admit her since how she is hyrdated:confused:

 

Her dr is affiliated with this hospital and I doubt he would transfer her.

[Denisemomof4]

Would you sign out to go home or to another hospital for another opinion? If you want to go somewhere else, you can call them and arrange a transfer. I have less experience with signing out AMA.

 

What is AMA?

 

I don't even know what they would do for her. I do know i am not thinking clearly. I will talk to dh in the morning.

[Jean in Newcastle]

What is AMA?

 

I don't even know what they would do for her. I do know i am not thinking clearly. I will talk to dh in the morning.

 

AMA means Against Medical Advice

[MariannNOVA]

:grouphug::grouphug::grouphug:

 

Denise: Are they giving her or have they given her Midodrine hydrochloride? It is used in hypotension, high blood pressure, syncope vasovagal, postural orthostatic tachycardia syndrome, orthostatic hypotension and one of the side effects can be skin discoloration.

Edited July 29, 2012 by MariannNOVA

[Whereneverever]

What is AMA?

 

I don't even know what they would do for her. I do know i am not thinking clearly. I will talk to dh in the morning.

 

She has a persistent infection and Lymes, right? I'd call that the hospital you want and do a phone consult. Are you looking at a children's hospital? If you send me the link I can help you see where to call.

[Denisemomof4]

She has a persistent infection and Lymes, right? I'd call that the hospital you want and do a phone consult. Are you looking at a children's hospital? If you send me the link I can help you see where to call.

 

Thank yu. It isnt a childrens hosp. But they have a pediatric area and are wonderful. It is the DH i mention above. I need to talk to dh in the morning and I think i will call them then. If I could only sleep a coupke of hours I would be a new person. By the time I fall asleep the nurse will be back on making noise. Oh well. I am listening to dd snore and it is sounding like beautiful music to me. We only slept 30 mins last nigh.

 

Theproblem with the lymes is that even tho her ELIZA (?) came back positive, any facility/dr will not say she has lymes because the western blot was negative. Only lymes literate docs can help with that.

[Annie]

I wish I had some advice for you. :grouphug:

[MariannNOVA]

http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706ell

 

Tell me if any of the info in the link above sounds like your dd.

[*Jen*]

If you were to sign her out AMA talk to your insurance company first. When my DS was in the NICU and I wanted to sign him out AMA my insurance company told me that they might deny some of the claims if he was signed out AMA. It's easier to fight for a transfer.

[Whereneverever]

Thank yu. It isnt a childrens hosp. But they have a pediatric area and are wonderful. It is the DH i mention above. I need to talk to dh in the morning and I think i will call them then. If I could only sleep a coupke of hours I would be a new person. By the time I fall asleep the nurse will be back on making noise. Oh well. I am listening to dd snore and it is sounding like beautiful music to me. We only slept 30 mins last nigh.

 

Theproblem with the lymes is that even tho her ELIZA (?) came back positive, any facility/dr will not say she has lymes because the western blot was negative. Only lymes literate docs can help with that.

 

Are you at all by Philadelphia? CHOP treats Lyme based on symptoms and a history of tick bites, not western blot. And CHOP is a truly amazing hospital.

 

http://www.chop.edu/healthinfo/lyme-disease.html

[MariannNOVA]

You want your dd seen by a pediatric rheumatologist.

Edited July 30, 2012 by MariannNOVA

[melmichigan]

If you were to sign her out AMA talk to your insurance company first. When my DS was in the NICU and I wanted to sign him out AMA my insurance company told me that they might deny some of the claims if he was signed out AMA. It's easier to fight for a transfer.

 

:iagree: Many insurance companies will deny claims if you sign out AMA. I would fight for a transfer too.

[Denisemomof4]

Are you at all by Philadelphia? CHOP treats Lyme based on symptoms and a history of tick bites, not western blot. And CHOP is a truly amazing hospital.

 

http://www.chop.edu/healthinfo/lyme-disease.html

 

I have considered them before.

 

http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706

 

I am sending you this link again -- my dd32 with chronic lyme's experienced all sorts of mottling/skin symptoms etc. She was finally (after 6 years of doctors) diagnosed with ehlers-danlos.

 

You want your dd seen by a pediatric rheumatologist.

 

I am going to go read this. I just had to close my eyes a bit.

[Denisemomof4]

http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706

 

I am sending you this link again -- my dd32 with chronic lyme's experienced all sorts of mottling/skin symptoms etc. She was finally (after 6 years of doctors) diagnosed with ehlers-danlos.

 

You want your dd seen by a pediatric rheumatologist.

 

I don't think it sounds like her.... Let me go read your first limk.

[swellmomma]

Denise get some sleep! Get off line and try to get some before the nurse comes back. Seriously, internet sleuthing for a cause can wait until morning. Go to sleep! that is an order.

[Denisemomof4]

http://www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706

 

I am sending you this link again -- my dd32 with chronic lyme's experienced all sorts of mottling/skin symptoms etc. She was finally (after 6 years of doctors) diagnosed with ehlers-danlos.

 

You want your dd seen by a pediatric rheumatologist.

 

Her feet hurt a lot which is a tell tale sign of one of the tick borne diseases. She periodicallh has hip pain but mostly doesn't have arthritic type pain outside of her feet.

 

Her shoulder blades are....... Something. She can do something weird with them to make them stick out a lot. I am sorry I cant explain it well. She dislocated her elbow around 18 months and it happened a coupke times after that then healed. Her skin doesn't appear elastic at all and she has no extra folds. She does briose easy. I don't know how I would know if she had the vascular form, and I hope and pray she doesn't.

 

I KNOW IN MY HEART there is smethng to her skin discoloratin, including the bluing of her face which really doesn't happen now. I am concernec with her body color changes and nobody here seems to be. It is maddening.

[Denisemomof4]

Denise get some sleep! Get off line and try to get some before the nurse comes back. Seriously, internet sleuthing for a cause can wait until morning. Go to sleep! that is an order.

 

I have tried so hard. I am reallh not doing medical searches because I am far too burnt out to handle that now.

 

Dh and dd9 were here today but dh going to have to relieve me tomorrow so I can pop a Unisom and ger some sleep.

[Starr]

I am labled as crazy over protective mama there because i kept wanting answers when her face was tur ing blue. Several doctors told me NOT TO WORRY and they regularly brush me off now. I have no confidence in that place.

 

I do like Dartmouth/Hitchcock but honestly don't know if even they can help us.

 

Has anyone ever signed someone out of a hospital whem drs didn't release? What happens? Because this is my KID I worry what could happen. Could i get into trouble.

 

I am so sorry they take you for a crazy person, really, her face is blue doctor. AMA can be no insurance coverage, be careful.

[Denisemomof4]

I entered a post about the skin discolorations on My FB vasovagal syncope group and although only two members responded (it is very late) neither heard of such a thing.

 

24 doctors now and NOBODY IS CONCERNED ABOUT THIS. i feel like I am going insane,

 

I cant just up and go to PA u kess I can talk to someone first to see if they can help us.

[Denisemomof4]

I am so sorry they take you for a crazy person, really, her face is blue doctor. AMA can be no insurance coverage, be careful.

 

And my biggest problem is that nobody ever witnesses this. I have recorded her, i havr taken pictures, but it really dos NOT show what I am seeing.

 

The nurses were concerned for her coloring yesterday, then after tests were run they tell me it was dehydration.

 

I am going to check mystery diagnosis website to see how i can qualify her fir that.

 

And the REALLY bad thng is that dh needs me too because of his lymes treatment.

[MariannNOVA]

I think that right now you need to rest. You aren't going to be any good to anyone if you fall over from exhaustion.

 

Go To Sleep!:grouphug:

 

You do, however, want her seen by a pediatric rheumatologist.

[Denisemomof4]

:grouphug::grouphug::grouphug:

 

Denise: Are they giving her or have they given her Midodrine hydrochloride? It is used in hypotension, high blood pressure, syncope vasovagal, postural orthostatic tachycardia syndrome, orthostatic hypotension and one of the side effects can be skin discoloration.

 

I don't believe they gave her this. They are dismissing the symptoms lime every other doctor does.

 

My problems is her skin discoloration started before we came here.

[Denisemomof4]

I just called dh to come and relieve me. I will not be available to respond or update. I am going to pop a Unisom and hopefully get some sleep.

 

It is completely unlike me to leave before seeing the doctor in the morning but I figure it will be a complete waste of time anyway, so why bother?

 

 

Thanks again so much to all of you.

[thescrappyhomeschooler]

:grouphug::grouphug::grouphug::grouphug: