Deep doo-doo time for baby cobra

[piebaldpython]

BABY COBRA (26 yrs old) IS CURRENTLY UNDERGOING INPATIENT KETAMINE INFUSIONS IN THE ICU. PLEASE KEEP HER IN YOUR THOUGHTS AND PRAYERS AS SHE GOES THROUGH THIS FIVE DAY TREATMENT IN THE HOPES OF REMISSION FROM RSD. THANK YOU!

Long-time Fretters may remember that we went to Germany in 2008 and she went into a medically induced coma with a massive ketamine infusion to get rid of her RSD. At a cost of roughly 65K (USA insurance doesn't work in Europe), it worked and we/she had 4 years of bliss until this past April when a jack-*** doctor did a lumbar puncture (to see if she had viral meningitis) and didn't follow her instructions and the RSD came back. She is almost bed-ridden and back into a wheelchair for the past month.

Hopefully, this will work. Thanks for prayers and mojo.

[Tig]

Mojo and prayers for your girl, PBP. I hate hearing that everything returned.
RSD sounds like hell on Earth.

[Bookkeeper's Son]

Hoping for the best!

[poodlesrule]

Maybe we can all join and visuallze her in good heath and spirits, throughout the day, together, like on top of the hour, to pool efforts..?

[Robert]

Sad to hear. Hoping for a full and speedy recovery.

[sunvalleylaw]

Sending warm wishes, prayers, and positive thoughts right now!

[tjcurtin1]

Oh, man, Piebald - I am so sorry to hear about that. We'll be thinking of you all - hold the picture of her well in your mind and remember she can get back to that place.

[Katastrophe]

Prayers sent, man. I hope Baby Cobra goes into remission again, and soon!

[poodlesrule]

I wanted to do a bump-of-the-day for Baby Cobra but Mr. Kat took care of that.
Wishing for another successful therapy day.

How are Papa Python and family, friends coping...?

[deeaa]

All the best. I hope the dumb*** doc has to cover for the mistake too...

[helliott]

So sorry to hear about this piebaldpython. Thoughts and prayers are with you and your family.

[Katastrophe]

Any updates so far in the treatment?

Continued prayers for Baby Cobra and the rest of the Piebaldpython family, for strength, comfort, and quick recovery.

[piebaldpython]

She's still in ICU undergoing Ketamine infusions 24/7 for her RSD. They take lots of vials of blood a day to make sure all her levels (blood gases, liver, etc.) are okay. Her arms are full of bruises from the needles. They also had problems with the IV line yesterday. It took 4 tries to get it back in. Phew!

ICU gave us permission to stay overnight with her. We have someone in her room 24/7 so that she can relax as best she can under the circumstances & feel safe so that the ketamine can do its job.

Ketamine is a powerful drug that can cause hallucinations.........while she isn't having an LSD trip.....she is on edge a bit and having some anxiety issues. They are giving her drugs to combat that. Supposedly, this ends on Monday.

[R_of_G]

I'll keep your family in my thoughts PBP.

[NWBasser]

I'll be wishing for a full recovery for her.

I very much hope that everything turns out well for her.

[piebaldpython]

What a mess....infusion didn't work and she's essentially just as bad now as when she went in. She was very depressed and then the doc turned around after not seeing her at discharge and wanted her to have Psyche evaluation. $450 later, the Psyche doc says there's nothing wrong with her. We see the RSD doc Monday.

She also has GI issues from the RSD and we know a great GI doc and will probably at least get X-rays/MRI of the intestinal area to make sure there are no blockages/stenoses/or "dead" areas. This happened to an RSD friend of ours.

On a good note.....we've contacted the RSD guru in Germany and we may road-trip there for a final shot at this thing.

Prayers and mojo appreciated.

[sunvalleylaw]

Continuing prayers and warm wishes.

[Tig]

Keeping fingers crossed.

[Robert]

Thinking about your family and hoping this will resolved soon, in a GOOD way.

[kidsmoke]

Craziness PBP. I am so sorry that you're going through this. I'm sure on some level you're flippin' out, but I can hear the resolve, and the levelheadedness of having a job to get done in your posts. What a blessing you are to her. Keep it up, brother.

Your family will remain in the forefront of my thoughts and prayers for the foreseeable future.


,

[Katastrophe]

Man, I hope Baby Cobra gets well soon.

[Brian Krashpad]

Jeez Steve I just saw this. Mojo and prayers. Take care.

[NWBasser]

$450 later, the Psyche doc says there's nothing wrong with her.


Criminy, what a load of hooey. Going through what she's experiencing, I don't think it would take a psych doc to figure out that she's depressed about her situation.

For $450 I would expect that said psych doc help her with her depression.

[mrmudcat]

Pie give your girl a big hug from me brother and assure her I do know how she feels. Peace & Luv FO-SHO

[mrmudcat]

Bless you and yours brother!

[piebaldpython]

The update is that the ketamine did help a little bit after all the needles were taken out of her. She mostly uses a wheelchair.......sometimes she can use a walker but not too much as it bothers her right shoulder. From time to time she can stumble around the house by leaning on the walls. The cold, rainy/snowy weather that we had the past week was tough on her. Her spirits are great though and her boyfriend is a gem and sticking by her side.

She goes for outpatient ketamine infusions next Wed-Fri (01/09-01/11). Waiting to hear back from Germany on a possible road-trip.

The wife and I went to Las Vegas for a week (12/22-12/29). We weren't home 12 hours when my Dad (87) was taken to the ER with congestive heart failure. He's stable at the moment.

Never a dull moment in Philly.

[Tig]

Rotten news all over again. Hopefully both your girl and your dad can get treated and back on the road to good health.

[sunvalleylaw]

Rotten news all over again. Hopefully both your girl and your dad can get treated and back on the road to good health.

Ditto. All the best to you and yours.

[Brian Krashpad]

Man! Prayers continue.

[piebaldpython]

My daughter is still scuffling with her RSD/CRPS. She has to use a walker outside the house and depending on situation, she sometimes has to use a wheelchair. Had to withdraw from college last August with no plan to return due to her health. Physically, she is in pain the vast majority of the time....as though she is burning from the inside-out.

Mentally, her spirits are good but she can't concentrate or pay attention for very long due to pain. She tries to stay off pain meds as the side effects are worse than what she has to deal with.

Despite all of that, she just got engaged.....one could call it a "show of committment". He's a great guy and maybe one day she can get married....if she goes back into remission.

Because she is disabled, she can remain on my health insurance. If she marries, she terminates. Her fiance' works for a small company and his insurance can't compare to mine.

Roughly 90% of "bad" RSD patients who can't get relief eventually commit suicide......so the "prospect of marriage" is something for her to "look forward" to.

Outpatient ketamine boosters scheduled for mid-March.

Nothing promising on the horizon for a remission, treatment-wise anyway.

[Brian Krashpad]

Man. Prayers continue.

[Robert]

Sad to hear. Hoping for solution.

[kidsmoke]

Damn, man.

Well, sounds like she's got at least 2 great men in her life! How many women can say that!?

Doesn't balance out though. Praying for a miracle, man. Stay strong.

[Tig]

She sounds like an incredible young lady with a great spirit. I'm sure she makes the rest of us look like wimps!
I'm glad she has such a good man to be her loving fiancee.

We can only hope that there is a relatively pain free, happy future ahead. I'd say she certainly earned it.

[sunvalleylaw]

Can't really add to what the others have said but I sure echo it. I wish and pray for the best for all of you.

[Katastrophe]

Man... I'll continue to pray for recovery for Baby Cobra... and for you, and the rest of the family.

[mrmudcat]

peace & luv fo-sho ................

[piebaldpython]

Just got some great news……..BC had petitioned for her profs to give her grades based on her performance up to last year’s (May 2012) finals….she finally heard back from them……they are ALL giving her A’s…….they said she did exemplary work and deserved the A’s. So, she finished her junior year at Temple U with a 3.98 GPA and a 4.0 in her dual-major of secondary ed and English. Now, IF she can ever get healthy enough to get back to school.........

Happy dance…..

[sunvalleylaw]

Congrats on the good news!

[mrmudcat]

Thats great pie !!!!

[Tig]

That's cool! :dance A great step in the right direction for her. I hope things start lining up this way with her health, too.

[piebaldpython]

UPDATE: Baby Cobra (BC) is essentially relegated to using a wheelchair or a walker (if she's having a good day). She is unable to work or go to school. Her concentration and attention are shot-to-hell due to her constant pain. American medical treatment ain't cutting it.....and the FDA won't allow the procedure she needs......a ketamine coma like the one she had in 2008 in Germany.

So, we are road-tripping it yet again and will be going to Mexico for another ketamine coma with a wonderful doctor in a progressive modern hospital. We will be there about 5 weeks. This is all out-of-pocket as insurance won't cover an "experimental procedure" in a foreign country. We leave the USA on 09/05/13 and expected return date is 10/07/13.

So, prayers and lots of mojo are needed and appreciated.

BTW, the ketamine coma in Germany worked great for BC......until a State-side doctor didn't do a lumbar puncture correctly on her in April 2012.

[Tig]

This is so sad. :( BC and your family have my prayers, mojo, and sincere empathy.

[tjcurtin1]

Jeez, Pie, I'm so sorry to hear about this turn. Sincere good wishes to you and the family for a successful treatment.

[kidsmoke]

Thank you for keeping us apprised. Really do care, and continue to be humbled by your perseverance. Hoping it's succesful! your girl is the same age as my son. I simply can't imagine having the stones to fight the fight as you are. Cheers, brother pie.

[sunvalleylaw]

Thinking about your family and hoping this will resolved soon, in a GOOD way.

ditto. I hope the therapies you can find will help.

[duhvoodooman]

Hope that the ketamine treatment works for her! Positive thoughts beaming your way!

[mrmudcat]

Pie sorry for what your going through ,but as you and me have discussed there is no such thing as giving up!!Peace & Love Fo-Sho Godspeed!!

[Robert]

Sorry to hear this. I sincerely hope things will improve.

[piebaldpython]

Baby Cobra update: My wife wrote this and I copy/pasted it:

We head home to Philly tomorrow. Alessa is feeling good and is anxious to get home to her many pets. Leaving Monterrey, Nuevo Leon, Mexico is bittersweet. Alessa received another chance at having a normal life here. The hospital care is outstanding! The doctors, nurses, technicians, office staff, etc. are wonderful and kind. We leave here full of appreciation and gratitude.

Living in a hotel for over a month isn't necessarily ideal. However, this is a beautiful, clean, and very lovely hotel. The entire staff has been wonderful. They have been so kind and patient with us as we stumble our way through Spanish. They are so helpful and friendly in every way. We'll miss them.

Besides that, I could get used to someone coming in and putting fresh sheets on my bed, giving me fresh towels, cleaning the room and emptying the trash cans on a daily basis. What's not to like about that?! LOL! Plus, a wonderful breakfast buffet awaits us every day here!

We've even gotten to know the priest who says Mass at the hospital chapel and the nun who helps him. She picked Steve at the last two Masses to take up the collection...just like he does at home! They pick people who are at Mass to do the readings. Since we can't read Spanish, collecting money offerings is easy in any language! LOL!

However, the time has come for the adventure to end. I just want to click my heels together and say "There's no place like home. There's no place like home. There's no place like home."

[tjcurtin1]

That sounds like real good news, Pie - best wishes to you all for a healthy and happy return home, and to Baby C for continuing good health.

[marnold]

Good to hear! Hopefully there will be smooth(er) sailing from here on out.

[sunvalleylaw]

Best to you all!

[Tig]

Good news indeed! I'm glad things are looking up for your daughter. She's due for some pain free living.

My Dad lives in Mexico and has received some pretty good medical care, as well as some pretty crappy care. It really depends on the hospital and doctors, and larger cities like Monterrey have the better.

Personally, most of the people I've met in Mexico have been admirable in character and quite happy. I'm glad you guys had such a pleasant time during an otherwise challenging trip.

[helliott]

This is great news. Good vibes and hugs from Ontario coming your way. And your wife is a great storyteller, too, in case y'all didn't know that.

[piebaldpython]

As most of you know, the whole Mexican coma episode was a rousing success. We figured when we boarded the plane in Monterrey, that later that night, we'd be home in Philly and Baby Cobra would continue to be pain-free and well on her way to recovery. Unfortunately, IT hit the fan and we need more prayers. Here, in my wife's words, is what IT is. After that is a short blurb from BC, with her views on things. Thanks for all the prayers…………PBP

To all those who have been following Alessa's Mexican Coma Adventure, I want to thank you for being so interested and so caring. I also want to ask you for more prayers for Alessa.

Due to the damage done to Alessa's wheelchair in the Dallas / Forth Worth Airport by American Airline's baggage handlers, and the fact that she needed to ride in her wheelchair through the airport, she now has nerve pain down her left leg and up the left side of her back and shoulder. The nerve pain was completely gone when we left Mexico.

We arrived home at 3:30 yesterday morning after spending a good deal of time in the American Airlines Claims Department.

Her wheelchair is a Quickie custom made rigid wheelchair made exclusively to reduce any sensation due to bumps and vibration, which greatly affects anyone with RSD/CRPS. She can't use a regular wheelchair because she feels every sensation along the way, which aggravates RSD/CRPS.

We always give explicit directions as to how the chair has to be handled when we travel. This wheelchair has been to Germany, Florida, California and Mexico without a scratch being placed on it due to the excellent care given to it by baggage handlers and supervisors who worked for Lufthansa, Southwest and American Airlines on the way to Mexico.

Then all hell broke loose when we landed in Dallas, Texas! A baggage handler is supposed to bring the chair right to the door of the plane so it's waiting for Alessa. I got off the plane early to meet the baggage handler so I could put the attachments on the chair so that it would be ready when Alessa came through.

As a result, I was able to witness the man drag her chair up the steps from the tarmac. He dragged it the way a child would drag a teddy bear by one arm. I screamed for him to stop. He kept coming. The woman at the top of the stairs asked me if I expected him to carry it over his head. I said that I expected it to be carried, not dragged. It's lightweight and he just destroyed it! She then told me to file a claim if I wanted to.

Alessa rode in the wobbly chair through customs, through getting our luggage, through depositing our luggage for the next flight and then through security and up to the gate. I explained again how the chair needed to be treated.

A man was assigned to carry her chair down to the tarmac. I told him it was already damaged from mishandling. He assured me that it would be handled properly this time.

I sighed and went to my seat on the plane. The next thing I know, Alessa's pointing out the window of the plane. I look out and there's her wheelchair with no one around. The man who was "handling it" had disappeared. The next thing we saw was another man grab her chair and toss it through the air where it landed on it's side on the conveyor belt. By this time, I'm screaming and banging on the window.

The cabin crew must've thought a crazy person was losing her mind on the plane because the whole crew appeared at my side asking what's going on. I laugh as I type this because I really was feeling pretty crazed at that particular moment!

They called the ground crew and had a supervisor come and escort me down the steps to the tarmac so that I could show them how to put her wheelchair in the luggage compartment of the plane. If it wasn't for the reason that I had to be there, I might've enjoyed the experience of seeing where the luggage goes that nobody normally gets to see.

By this time, however, the damage had been done.

American Airlines sent a man to Alessa's house today to evaluate her wheelchair. He's hoping that they'll get her a new one based on his recommendation. He was extremely nice and understanding. He said his full time job is repairing all the wheelchairs that the airline destroys.

Alessa said she has a lot of muscle soreness and nerve tenderness today. The air travel by itself is taxing on her body without the added problems from the damaged wheelchair.

She has an appointment with her neurologist on Monday. She hopes that she'll be feeling a lot better by then. I'm sure that between her Philly doc and her Mexico doc, they'll decide if she needs ketamine boosters here in Philly and come up with a plan.

Please pray that she'll be okay! She just went through so much to try to gain remission and was doing so well.

Thanks again for your prayers, kind thoughts and words of support. We appreciate it more than you know. Hugs to all...xoxo...


Mrs PBP


Now, a few words from BC about WheelchairGate:

Today is apparently "mobility device repair and replacement day" around here. The wheelchair repairman was amazing and is pushing the airline to fully replace the chair. He is also stating that I am the FINAL judge as to whether the chair is fixed properly - Not him, and CERTAINLY not the airline.

And I'm apparently a "child size" in walkers.
I definitely needed a pediatric walker. The adult size was much too big. The smaller walker is still pretty large, so I wonder what ACTUAL kids do.

I WANT them to replace the entire chair. The REAL question is whether the airline will pay for it upfront, or try and replace parts piecemeal only to replace the entire chair in the end.

[Robert]

What a story. I hope all goes well - warm thoughts sent from a chilly morning in Canada!

[poodlesrule]

I will keep BC in my thoughts.
I can do the overnight shift, as I am a light sleeper.

[mrmudcat]

They better handle it or one pissed off redneck will pay them a visit and see how it feels to be thrown on a conveyor belt,,,,,,,,,,,FO-SHO!!!