Aiden responding to drugs - labs are coming down !!! yahoo (update on page 7)

[War Admiral]

Loff you Lisa, hang in there & keep us updated!

______________
"It's a thin line between a smart TB and a smart-@$$ TB."

[Inverness]

I'm late for a meeting but I'm stopping this long to send you positive vibes from Wash, DC. C'mon little Lion; its high time you were going home for good!!


Pax et Bonum - Inverness

[Catalina]

Come on Lionheart, beat that big, bad rejection thing. You can do it!

*formerly cfc*

[Louise]

Checking in and jingling for our young man. Have had some bumps in the road myself the last few days and have not had a chance to make my presence known as much as I would like, but please know that whatever I do and wherever I go, I am thinking and praying for our young Lionheart.

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This too, shall pass.

[agedbayhunter]

Just stopping by before I head out into the cold (we had HORIZONTAL snow earlier this morning as a squall blew through) to forage for food and office supplies.

Jingling and praying for more positive news. Will stop by later to see what's up!

And...will somebody tell Aiden's course designer that it's not fair to keep adding jumps to the course during one's round!!!!

[WhiteTiger]

Lionheart, you have come so far, and you'll go farther, keep up the fight littleone. We are all jingling and praying for you.

PWBTB@WC (People who browse the BB at Work Clique)

[EqChick]

2-12 UPDATE: NO INCREASE IN LABS, BUT A CRAZY BABY!!

In response to the Solumedrol, Aiden's labs seem to have stopped increasing (good) and some have even dropped a teeny bit (very good)!! Unfortunately, Aiden is acting like a maniac, just like they expected. He is not in pain or uncomfortable at all, but it basically trying to climb the walls. If you try to hold him, he climbs you. If he's laying down, he wants to be standing up. If he's standing up, he wants to be laying down. No toy, parent, or nurse seems to satisfy him for more than a few minutes, and he is putting on quite a show (I could hear him yelling through the phone! Not crying, not whining, just yelling... just mad! )

So, not much change, but things seem to be under control now.

A side issue (you know there is ALWAYS a side issue): if you recall Aiden's dairy protein allergies, you'll remember his severe reactions to it. Well, you guessed it - he got the wrong formula from the hospital pharmacy AGAIN. I can only assume those pharmacists have not heard how big and mean and intimidating that little boy's Godmother is!!! (hey, no laughing from the peanut gallery)

Seriously, Aiden received the wrong formula for almost an entire day, which would have resulted in a severe reaction. Fortunately, severe allergic reactions of that type are treated with Solumedrol, which Aiden was already receiving, so he did not have a visible reaction. Unfortunately, though, every time he is exposed to dairy proteins, it risks his ability to overcome the allergy later in life.

So, the Hawks are pleased that the labs have stopped going up, are dealing with a VERY sassy baby, and are trying their best not to accidently let the air out of the pharmacists' tires.

Will post with more news when I have it!

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~~Jingle~~Jingle~~Jingle~~Jingle~~Jingle~~Jingle~~

[EqChick]

RF, I wanted to post a separate note to you. I am so sorry to hear about your father. Each and every case I learn about is so sad, I don't think I will ever get over the initial shock of hearing each patient's situation. I am glad you guys are getting better attention at Emory. Hopefully your family can appreciate Dr. Heffron's sense of humor better than me! I have been so busy with work lately, that I have not really been reading the BB thoroughly, just dropping in on threads here and there. I'm sorry I didn't see you post earlier. I hope that I can stop by for a visit once things are a little less crazy for you and your family. Since you will be staying at the Mason House, I'm sure I can see you there (it is a really pleasant place, I'm sure you'll be even more comfortable there).

So I just wanted to let you know that your family is in my praryers, and I'm picturing meeting you guys (all healthy) in the Mason House living room! Take care of yourself and your mom, and I hope to meet you soon!

*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

~~Jingle~~Jingle~~Jingle~~Jingle~~Jingle~~Jingle~~

[Risk-Averse Rider]

I don't know if Medrol and Solumedrol are the same thing, but I assume they're at least closely related, since the names are so similar.

I've been given Medrol Dosepaks several times (not recently, thankfully - KNOCK WOOD), and I have clear memories of 6 foot flames coming out of my mouth and ears once the drugs kicked in. In the back of my mind, I'd be thinking, "Why am I so furious?"

My sympathies to WildChild and his family. And anyone within earshot!

________________
Approved helmet: Every ride; every time.

[monstrpony]

Yikes. This is so unfortunate, I can't help feeling badly for poor Aiden. I know things could be much worse, but it pains me for such a sweet baby to have to go through this! Really, I am not a "baby person" at all, and yet I found Aiden so pleasant to be around; to think of him going thru this drug-induced unpleasantness and having no way to understand why his world gets turned upside down this way at regular intervals. It's stressful to even think about.

I do feel just a tad (just a tiny bit) sorry for that pharmacist--I sure wouldn't want to have the Xena Warrior Mommy on my case for any reason!

This too shall pass, this too shall pass....

RF--looking forward to the next Atlanta Clique Liver Transplant Survival Celebration in honor of your father. Meanwhile, hang tough, we're jingling away for you & yours. I'm sure the locals will take good care of you, they're a great group!

___________
He's not really a pony, and I'm really not "pony aged" either.

[Debbie]

Lisa --
Hang in there chickie and give the wildchild a smooch from his honorary aunties. I'm heading out of town again for a couple of days, but will be thinking of the lionheart and hoping your getting good results. Let me know if you need a pony fix this weekend or if I can do anything else to help or just visit.

RF -- same goes. I hope your father continues to improve and has a new liver soon.

[Lily]

Thanks for the update, EqChick! I'm hoping Aiden is feeling a little bit better today!

Risk-Averse Rider, can we add Rumours Follow's dad to the curb chain jingle thread?

[EricaR]

Thank you so much for the update!!

If I learned one thing while I was taking care of my aunt in the hospital it was that you cannot trust the hospital nurses or pharmacies. We quickly learned, the hard way, that we had to check every single medication that was given to my aunt, and I will admit that it was kind of scary how many mistakes we caught!

I'm hoping that those numbers continue to fall!

What if the Hokey Pokey *IS* what its all about?

[ladydoctor]

Thanks EqChick for the updates and thanks Lisa for putting your room number in your post ;-) RF, hope you're hanging in there.

I talked to Lisa and she is doing as great as always. I did hear the WildChild yelling in the background but he thankfully fell asleep while we were talking. He is on HUGE doses of SoluMedrol given many times a day as an IV bolus. He had his ultrasound this AM which took 2 hours because he was so WILD! They even had to sedate him. Lisa said he usually loves being ultrasounded (if that is even a real word). No results yet...

[Risk-Averse Rider]

Thanks, Lily

I just updated the page - now the curb chains are working in quadruple time.

Lisa - you should attach a curb chain to WildChild - sounds like he could be doing some heavy-duty jingling ;-)

________________
Approved helmet: Every ride; every time.

[Quinn]

Hi Lisa:

Hope things are soon better. I have only good feelings on this one.

RAR, I had to laugh (with all due respect of course) regarding your "flames." I tend to spew fire quite frequently and I take no drugs at all. Having said that, maybe I should!

"If you are going through hell, keep going." ~Churchill~

[Risk-Averse Rider]

Quinn...

The Medrol-induced flames were nothing compared to what I was spouting the day I came around the corner in a cross country lesson and found one of the barn rats perched on top of the tire jump I was heading for. Fortunately, she scrambled out of the way, and even more fortunately for me, Prozac Pony wasn't unsettled by the sudden sight of a child on course, but I think the kids are still bearing the blisters from the tongue-lashing I gave them as I thundered around them in a tight circle ;-)

Imagine what it would have been like with steroids...

________________
Approved helmet: Every ride; every time.

[Whistlejacket]

<BLOCKQUOTE class="ip-ubbcode-quote"><font size="-1">quote:</font><HR>Originally posted by RolexH:

Whistlejacket, thanks so much for explaining HAT!! I am the type of person who likes as much info as possible. I get copies of every lab and I am VERY familiar with liver transplant. There is always new things I am learning but defintly the type of person who likes to learn everything. Tomarrow morning they are going an ultrsound to check his vessles including HAT. As we know before he had portal vein thrombosis. Ughhh! However from my understanding they said it would be unlikely this far out after transplant to have problems with the hepatic artery. I will have to wait to see the results.
<HR></BLOCKQUOTE>

RolexH,

I kind of suspected that you prefer to know the information - as you certainly don't come across as the shy-retiring type when it comes to all and anything Aiden!

In this type of medical situation, however, I always ask the individual's preference, as different people do have very different reactions to being informed about "all the details."

It also sounds like you, as do many patients and their families going through liver transplantation (especially the parents of pediatric patients ) , have become very familiar with the transplant-related issues and medical lingo. When all is said and done, essentially the patients and their families have earned honorary medical degrees!

As such, when I post general liver transplant information on these type of threads, I realize that this is information that is well-familar to you. I go into more detail and explanation, however, because as far as I can tell, COTH BB'ers are certainly "information seekers" - among other things.

I hope that posting this general type of liver transplant information is okay. Let me know if it is not.

[RolexH]

RAR-- I was laughing out loud for about 5 minutes after reading your post. My husband looked at me like I was crazy. TIE a curb chain to him!!! BA HAHAHA !! Last night he was climbing me like a pole! Squirming and whining and wild. He even started to smack me and buck. He is crazy! I just laugh and laugh at him. It is actually funny becuase in the middle of his screaming he will start hysterically laughing. Go figure!

Aiden's labs responded beautifully to the solumedrol. Today they cut in half. YAHOOO! I am so glad. Our surgeon wasn't still totall convinced it was JUST rejection, I hope this concvinces him. But that is why I love him because he always looks outside the box.

Whistlejacket: Honorary medical degree. HA! No thanks I will leave that to the pro's. BUT I can understand JUST enough. But I do have to giggle because one of the mom's I ran into yesterday told me a conversation she had with our surgical team. She is still waiting for a liver, and was asking for a mentor parent to speak to. Dr. H and the team suggested me. They said I was by far the most educated parent they have ever had. I was really flattered, but now I razz the team about it. HAHAHA they regret it now. I think they ment to say most annoying parent they ever had. Or the parent that talks the most. HAHAHA

ANyway, they are going to do another bolus of the solumedrol so we are in for it again today and tomarrow. But honest to God it just feels awesome to have him act so wild. He just never did these things before transplant, I can never get enough.

We are going to go to the Valentines Day party. MICKY, MINNIE, AND PLUTO are here!! The orginals from Disney! I will get a lot of pics. Loff you guys

~~Lisa~~
Organ donation: a gift for kids to grow UP on

[Lily]

Aiden's first Valentine's Day! I can't wait to see pictures of his Disney party!

Lisa, I hope you and Joey will be enjoying a fun night out tomorrow!