PS Fairy Dust Please for my Mom.

[Gypsy]

Hey everyone. I would like to reply to you individually, as you are all so wonderful, and will when I get home... but here's a general update.

We intended to go up last night, but after the 8:15 shift change (ICU is closed to visitors from 7:00-8:15) but my step father called saying that he and his brother (he has three MD siblings-- varying specialties-- this one was an anesthesiologiest in San Diego) talked to a Dr who approached them about entering mom into a clinical trial. And that I needed to get to the hospital ASAP to give my consent. So we left the house in a hurry. Then had to turn around 20 minutes later cause we left the BBQ on and on fire. When we got to the hospital it was 8:15 and we found out more about the clinical trial, felt comfortable enough with it (consulted her normal doctor) to consent. So she's on a special lung treatment (it's not an experimental drug or anything like that... it's a well known non-steriod asthma medication that they are adding to her breathing tubes-- the application is new, not the drug). It comes with additional nursing and therapist monitoring and care... which is a plus. And it's a blind study so that she's given a placebo (won't hurt her) or the drug (which has a good chance of making her better, I had a treatment with it when I had pnemonia). The bad part came with the statistics and everything about they diagnoses that prompted the offer for enrollment in the trial. But we got over that too.

Mom was sedated and OUT, didn't notice a thing. I sat with her privately (with John) and talked to her for a while-- postive energy and focusing on the good, and being really positive. Also had John take some pictures to document this process (he was uncomfortable, but I'd rather be prepared than unprepared in case , God forbid, anything goes wrong).

Then we went home. Was late. Didn't get much sleep, but did get to come in here at 10 am, so that helped.

Called this morning, mom passed an uneventful night, slept and rested. This morning they work her... Panic anxiety, stress, fear... so they knocked her out again. Can't say I don't agree with that. Her anxiety and fear and hindering her recovery.

Step-dad's bother (anesthesiologist) is coming up from San Diego. So Frank will have som support and someone with him, and we are hoping the support will calm him and help him to gain some perspective and a little peace.

Also my aunt in LA is coming up this weekend, which I think will be a good break for us too.

That's about it. I don't know more than that... will call later today for another update. And I'll post if anything has changed, bad or good.

((HUGS)) my friends and many many thanks. You all humble me.

 

[Ellen]

Gypsy, thank you for the update, I was wondering.

Things sound good.

Get some rest.

p.s. Good for you for documenting things, I wish I had done that with my dad. Who gives a flip what it looks like.

 

[KimberlyH]

Gypsy, I''m so glad her night was uneventful...I''m sure she''s terrified and keeping her sedated sounds like a good thing.


Positive thoughts...

 

[AGBF]

Thanks for taking the time to update us, Layla. With all his brothers being doctors, I wonder why your stepfather didn''t become one. I don''t know whether it would be better or worse for you now if he were a doctor. I guess it is irrelevant and the only thing that really matters is your mother! The clinical trial sounds like a good thing. It sounds as if it will mean a lot more attention for your mother. I am not sure what frightened you. Was it that in explaining the clinical trial the doctors gave you some scary statistics about who recuperates from this surgery? We all continue to think of you.

Deborah

 

[hlmr]

Just a quick post to say I am thinking of you and your Mom, and continue to send strength and healing thoughts your way.

 

[strmrdr]

prayers continue
**huge hugs**

 

[Gypsy]

Okay. I lied about the individual responses tonight, and I feel really guilty, because you all take the time out of your day to post, and the least I can do is post to you individually. I'm sorry. I'm just so tired. I'm not going to the hospital, and just going to go into bed in a little while, and unwinding on here now so I can sleep.

Update:

Franks brother is coming Friday morning, will stay with him for a few days. My cousins are coming this weekend to stay with my grandparents. My aunt from TX (who was here for three weeks last time to help out) is coming on Sunday night to stay as long as she's needed. REINFORCEMENTS. I was so relieved when I talked to my aunt I started sobbing in the car on the drive home.

I'm feeling a little more like things are going to be okay.

Mom is sedated and her condition remains much the same, not a lot of improvement today, but no backpeddling either. I talked to the nurses a couple of times. Still a lot of gunk in her lungs... but they're working on it. I'm just happy that she IS sedated cause she IS ver frightened.

As for what scared me, the first page of the clinical trial, it started with an into paragraph that went something like this, "You are being considered for this trial because you have been diagnosed with X. X is a condition that is fatal in 25-30% of cases." ... That's about when my stomach hit the floor and my eyes almost rolled back into my head.

Thank you for all the support, the hugs, the check ins, positive energy and caring!

You know what? I think I'm going to have some wine tonight. That sounds good. Norton Reserva Malbec from Argentina on the way.

 

[Skippy123]

Well Gypsy since you are having wine, I want to say cheers to things looking up and people helping out. Honey, no need for individual posts at all nor feeling bad (you have way too much going on). You take care of you and your mom; that is the important thing and thanks for keeping us posted. We just want everything to go well for you and your mom.

Hugs sweetie pie!

 

[Gypsy]

Date: 9/18/2007 11:45:07 PM
Author: Skippy123
Well Gypsy since you are having wine, I want to say cheers to things looking up and people helping out. Honey, no need for individual posts at all nor feeling bad (you have way too much going on). You take care of you and your mom; that is the important thing and thanks for keeping us posted. We just want everything to go well for you and your mom.

Hugs sweetie pie!

Thank you honey. The wine is really good and the relaxation welcome. I will definitely keep you all posted, and thank you for the hugs! Definitely feeling a little better tonight.

 

[Kaleigh]

Thanks for checking in. So glad you have family coming to help during this time. Take good care, sending hugs, prayers and positive thoughts your way.

 

[Gypsy]

Thank you for everything Kaleigh... I''m feeling really relieved that they are on their way, I can''t even express it.

 

[strmrdr]

thanks for the update glad too hear help is on the way.
Prayers are continuing.
Don't worry about individual thank yous.
The time is better spent relaxing!
**hugs**

 

[Kay]

Gypsy, I just opened this post. I am so sorry for what your mother, you and the rest of your family have been through. It sounds like you have been incredibly strong and a wonderful advocate for your mother. Good for you for pushing the hospital to make sure she gets the best care available to try to fix the problem. (Sounds like you scared the right people and the hospital is now trying to make you happy to reduce the likelihood of a lawsuit or to limit the damages.)

 

[Ellen]

Gypsy, thank goodness help is on the way. Yay!

And for heavens sake, we all KNOW how much time it takes to respond to everyone individually, and I don''t think ANY of us expect that. So please don''t feel you are slighting us.

p.s. How was the wine?

 

[sparkles]

Gypsy, thanks for the update. Please keep us updated when you have the chance.

 

[Beacon]

Hi Layla, I have been out of town and just saw the continuing story here. I am sooo sorry to hear that your mom is doing poorly and I truly hope she gets some improvement soon. I know you must be going through the worst time in your life, I am so sorry to hear about all the stress and difficulties.

I pray for a good outcome and your mom being healthy and everything settling back down to normal for you. Try and take care of yourself, you cannot carry the whole load. Be well - I''m thinking of you.

 

[Gypsy]

Hello everyone.

Yes the wine was good, and I didn't suffer any ill effects this morning which was good considering we split a bottle, which I rarely if ever do... usually stop at a glass or two. But I think I really needed it to relax a little, I'm feeling anxious this morning, but that dragging wieght is a little lighter and I'm a little (not a lot...lol) less snappish. Which is good for the people I am meeting with today.

Called the nurse (I'm leaving work early today at 3:00pm to relieve Frank). Her anxiety is still a big issue when they wake her. They are trying to deal with that. They wake her cause they want her to move herself... to get some of the gunk in her lungs moving. Her lungs are 'marginally' better... "baby steps" as the nurse said. She's still going to be in ICU for 'a while.'

When she's out her BP is better. They are culturing her blood again to hunt up the bugs in her system. And her temp is about the same... about 100-101.

So baby steps. I'll take it.

Over all... a little ray of sunshine.

THANK YOU ALL!!

 

[snlee]

Good to hear your mom has some slight improvement. Baby steps are good. I'm glad that additional family help and support is coming. HUGS. Thinking of you!

 

[isaku5]

Gypsy, with all the stess you''re under, we definitely don''t need individual replies. Just read through the posts when you feel like it, and try to gain stength from them.

That figure of 25 - 30% failure rate is really not that high for the condition that your mom is in. I still remember vividly being told when our son was having his tonsils out 35 years ago, that there was a 20% chance that he wouldn''t fully recover, and that we had to go home to wait it out as they didn''t "need" us around. Being the docile lamb that I was then!!! I did what I was told ( while freaking out on the inside!). It would be a whole different story today!!Anyway, Mark was 100% one week after the procedure, and remaiins extremely healthy so far. I really think they trot out statistics like that to cover their butts.

Anyway, reinforcements are on their way for you

!!! Try not to be the micro-manager that we both are

and let the "reserves" do their job. I''m sure that John is more than capable of managing most of it, and with instructions to report "the whole truth" to you as required, you can rest a little (hopefully, a lot) more easily.

Bring on the wine with dinner!!

 

[Gypsy]

Thank you snlee... I really appreciate the continued support. And yes, the reinforcements are really welcome.

Isaku... okay so I won''t stress about the individual replies so much. Thank you for the story of your son, the reason it freaked me so much was the possibility of death.. outside of the surgical room, had not occurred to me. So I was taken by surprise.

I won''t micormanage my aunt. She''s very capable and I know that she is a really good advocate for my mother as well. Just need to tell her that Dr.J will probably blow is yet another member of my family gives him their two cents at this point, and that there will time for that later. Also need to figure out transportation for her. Last time John was her taxi service... and John is run down this time. So we''re going to have to get her over her fear of driving in the city. We''ll see how this goes. This particular aunt of mine hit a school bus once from behind. A stopped one. With all the red lights flashing. My cousin''s won''t let her live that one down. I wish the hospital was Bart acessible. It''s really not though, unfortunately.

 

[strmrdr]

checking in
prayers continue

 

[Sundial]

Just catching up on this thread after being gone visiting my own mother. All I can say Gypsy is that my prayers and best wishes for your mom continue. Please take care of yourself during this stressful time. I am so glad that you have some support to help you deal with all of this. There is no need for individual responses if you don''t have the time or inclination. We all just want you to know that we are thinking of you and hoping for the best.

 

[Gypsy]

Hi everyone, thank you for the continued check ins and support.

Went to the hospital last night. Talked to two ortho spinal surgeons, one said that even with the surgical adjustments that were made she might require additional neck fusion and surgery once the halo comes off. Dr. J was the second, and when I asked him about this, he said that he would be shocked as he did a fabulous job and it''s going to all be alright. By now we all know how I feel about Dr.J''s credibility, so I''m just praying that he''s not lying... or that the other surgeon was just being really upfront about the boundaries of ''medical certainty''... I certainly would appreciate a more conservative answer that says, ''we can''t say what the status is going to be, and what''s going to be required until she''s healed and progressed, but this has a good chance of working out" to a lot of blustering and (A LOT) of talking that basically sums up to ''Dr.J is great, he did a great job, trust Dr.J".

SO I''ve warned my two aunts of the possibility of that surgery (neither were happy with the information) and also a request to keep the information to themselves and not discuss it with ANYONE, especially Frank who I think would have a stroke at the thought.

They took my mom''s sedation medication down to half for a few minutes while I was there... panic, anxiety, confusion... I tried to calm her by telling her my aunts are coming out to see her....but , um. She got REALLY upset at that, and started writing (heavily sedated so hard to make out, and kept having to remind her I can''t read Farsi, only English) -- the jist of it was that apparently my ''good news'' translated to her that she was critical and might be dying and that my aunts were coming to see her before she passed. Tried to clarify... couldn''t get through, she was getting so agitated that nurse put her back under. Hysterical weeping from me ensued for a couple of minutes (outside of her room). Nurse and John reminded me it''s the drugs, and that they had to wake her because they wake her every 12 hours and she was due... and that it wasn''t my fault. Still feel HORRIBLE though. Just flat out kicked in the gut bad.

They are doing another independant breathing test on her now. She got to two hours yesterday, they are hoping for more today. Her temp spiked last night... and they aren''t taking the tube out until she passes a 24 hour breathing test. She''ll on the tube at least for the next 24 hours most likely.

Blood cultures hadn''t come back yet. Will check that later today.

They are trying to get her anxiety under control while decreasing the sedation slowly, as she can''t be on the sedation when they excabate.

The fever was a set back... but if the breathing test lasts some hours it will be a step forward, so I''m praying her lungs are clearer and stronger and that she makes progress there.

((HUGS)) everyone. Thank you for everything. Will update when I have more on breathing test and blood culture.

 

[angeline]

Gypsy,

I only just caught this thread. Just wanted you to know that anther person is now praying for your Mom and for you and your family.

My Mom''s had 3 big surgeries, I know how hard it all can be.

Thinking of you,

a

 

[AmberGretchen]

Oh honey - I''m sorry they are still giving you the runaround. I think its very smart that you know that it really is a question of the bounds of medical certainty at this point. Seriously, with any condition that is remotely complex you can ask 5 different doctors and get different answers. However, I am confident from what you''ve said that they are trying their hardest to do right by your mom, but I totally understand how frustrating a waiting game is at this point.

I''m sorry about the incident with her waking up. The medications she''s on right now are so intense I''m sure she''s not aware of how she''s reacting to things, etc...and so even though I know its hard, please try not to blame yourself for upsetting her - it really was the medications, not you.

I''m still sending big hugs and prayers your way and I''m around if there''s anything else I can do to help with all of this - you know how to get in touch with me.

 

[isaku5]

Date: 9/19/2007 3:37:37 PM
Author: Gypsy
Thank you snlee... I really appreciate the continued support. And yes, the reinforcements are really welcome.

Isaku... okay so I won''t stress about the individual replies so much. Thank you for the story of your son, the reason it freaked me so much was the possibility of death.. outside of the surgical room, had not occurred to me. So I was taken by surprise.

I won''t micormanage my aunt. She''s very capable and I know that she is a really good advocate for my mother as well. Just need to tell her that Dr.J will probably blow is yet another member of my family gives him their two cents at this point, and that there will time for that later. Also need to figure out transportation for her. Last time John was her taxi service... and John is run down this time. So we''re going to have to get her over her fear of driving in the city. We''ll see how this goes. This particular aunt of mine hit a school bus once from behind. A stopped one. With all the red lights flashing. My cousin''s won''t let her live that one down. I wish the hospital was Bart acessible. It''s really not though, unfortunately.

Sorry I can''t get my highlighting feature to work today

, but I wanted to clarify that I didn''t mean to infer that our son''s tonsillectomy was on the same level of severity as your mom''s condition. They are definitely poles apart. It was a poor example, and I apologize

I''m sending (((((more BIG HUGS today)))))) to you and your family.

 

[Fly Girl]

Gypsy - Just wanted you to know that prayers are continuing for you, your mom, and your family.

Both my parents have had surgery in the past year, and the pain meds just make them goofy. Your mom is not responsible for her behavior under those meds. And, obviously she needs those meds for her pain.

Thank you for the updates. Prayers for a good recovery, and hugs to you.

Fly Girl

 

[AGBF]

Layla, I am so sorry that your mother had a bad reaction (panic) right after talking with you about your aunts. You didn''t need that. You were too worn down to see that you had nothing to do with it. Obviously you said nothing wrong. You cannot control her imagination when she is on drugs.

Hugs continue,
Deb

 

[Ellen]

Thoughts and prayers to you Gyps.

And please, don''t be too hard on yourself, you are doing everything you can, with vigilance.

 

[wolftress]

Oh Gypsy, it must have been so distressing to hear your mother panicking because she thought she was dying. I have a lump in my throat thinking about it... I''m glad you have your aunts there for support. You stay strong {{{{hugs}}}} Little baby steps means your mom is on her way to recovery.