Just venting, nothing to do with the band

[whippledaddy 5]

I need to vent, and this is the only place I could think of. Attention Health Care Providers. If you wonder why people sometimes seem unreasonable or edgy, maybe this will give you some insight.

Monday, 9:10 PM: Patty falls, bumping her head and using her arms to break her fall. Bad idea with the right arm. Re-injures and flares up RSD. Ambulance comes as she is unable to get up even with my help. Ambulance worker, after having been briefed by me on her tunneled epidural catheter steps on same while lifting her onto stretcher, pulling it out of it's spot in her spine.

Hospital takes x-rays of cervical spine to see if catheter is dislodged. No one at hospital can tell. She is sent home about 2:00 AM. I stay up with her and tend to her pain, giving her toradol shots and back rubs. I go to work that morning.

Tuesday 7:30 PM. I arrive home from work only to find her in terrible pain. I call our home nurse's answering service. Recieve a call back in about an hour. Wrong nurse. Call answering service back. Recieve a call back in about a half an hour. Wrong nurse again.

I give up on visiting nurse, and call the hospital. Ask who's on call for our family doc. Hospital won't page them as they don't think it's an emergency. Call family doc at home, ask him to call the stuck up switchboard person at hospital and tell them it IS an emergency. He does. They call the doc on call, Patty gets some meds to get her through until morning.

Go to sleep in chair at 11:00 PM. Wake up at 1:00 AM, give Patty toradol shot, massage. Stay up rest of night. 8:00 AM up and call doctors at Cleveland Clinic for evaluation on her catheter, is it displaced? Only I get a recording telling me they don't open until 8:00 AM. Call back at eight fifteen, and eight thirty, and eight forty five. Call the main number and complain. Am told that the office hadn't taken their phone off of Night Answer. 9:00 AM call doctors office in Cleveland again, told doc can't be reached but will call back. 10:30 AM call doctor's office in Cleveland again, am told that I should have been called an hour ago by the home nurse who is on the way to our house. She should have already been there already as it is only a forty minute drive.

11:30 AM put in call to Home care company asking when ETA of nurse is, am promised a call back. Nurse calls, says she'll be here about 1:00PM. She has to locate a babysitter first.

Nurse comes and assesses situation with catheter. She doesn't think it's displaced. Then she looks at it again and thinks it is. Calls family doc and asks that an anesthesiologist read the x-rays of her neck from Monday night. She leaves. 2:30 PM, we call doc's office and ask if the films have been read yet. Are told that they have been, and although they can't tell for sure we should go on the assumption that the catheter has moved. Must be tended to as quickly as possible as it could cause nerve damage. Ask doc to call the Walk In Clinic and order pain meds IM. He says he will do so immediately. We get in the car and go to the clinic, stopping at the bank to draw out cash for tomorrow's rocket run to Cleveland. We use the cell phone to make appt with pain doc in Cleveland while enroute to clinic.

3:00PM, arrive at the Walk In Clinic for pain shot. Doc hasn't called yet. Clinic calls Doc and gets order. Now clinic must send out for drugs as narcs aren't kept on premises.

4:30 PM Patty finally gets a pain shot. Now we have to get home, pack bags, and get ready to drive the three hundred miles to Cleveland tomorrow. If all those medical professionals could have pulled their collective thumbs out of their butts long enough to CALL BACK when promised, we could have gone down today, and back tomorrow. Now Patty has to endure an extra day of pain, and an extra day of possible nerve damage. And I must take yet another personal day at work.

And, each phone call I had to explain what a tunnelled epidural catheter was, and each phone call I had to explain what RSD was, and each time I had to tell the whole story of the fall and ambulance trip. Everyone has all info on computer, and charts, and no desire to read or use those tools.

Well, haven't had good sleep in several nights, gotta get up and drive tomorrow, three hundred miles. Should go to bed.

Thanks, I feel better. Had to shout this out of my system. Sometimes I wonder how any of our systems work, they've gotten so large, so clumsy.

Sorry that it had nothing to do with the band. Now that I'm over being mad, I'd like to just sit down, forget about being macho for a moment and just cry until I dehydrated.

G'night.

[Alexandra 55]

Oh Ryan, what a nightmare! This is the sort of situation those futuristic imbedded chips with our medical records in them would help. Not in our lifetimes, I'm afraid.

Good karma will come down on you for being so determined in caring for Patty. Between your shared love and insistence on good care, the medical establishment doesn't stand a chance!

Now get some sleep. You deserve it, both of you.

[babsyintx 0]

Ryan,

You have a lot more patience than I do. I am really sorry that you and your wife are suffering because of inefficient care. Please get some rest and both of you feel better.

Babs in TX

[Rebeccalee 2]

I'm so sorry you are having such a terrible time! And of course this has something to do with your band. Stress can make it tighter, or can make us eat more or not at all. Lack of sleep can cause emotional stress, which affects the band journey. I hope all is taken care of tomorrow and you can get some rest and both of you can get back to normal. You are a trooper and Patty is lucky to have such a devoted husband.

[Theresa Marie 0]

Thank God you are an educated and communicative person; a lesser person would not know what to do or be so persistent in getting her care. How frustrating that you told the guy about the tube but he steps on it anyway-- hello?! I am so glad for your wife that she has you. Makes me wish you had a small-town Dr. right next door who loves you two as much as we do. Sometimes bigger in medicine is not always better. Ryan, what a terrible end to 2004 -- but I still believe 2005 is going to be a great year for you both.

I think of you as the little boy, standing outside shivvering with your loving mom looking up and listening to the magic of the Silent Night on Christmas Eve. Keep that magic alive in your heart as you go through these next couple days.

I pray for strength, forgiveness to the medical people, energy, and continued love for your both. Please keep us posted on how you both are doing. Hugs and best wishes, Theresa Marie

[New Hope 37]

Good grief! Wasn't this catheter to help Patty with her chronic pain? I am so sorry that you both have been through so much. Sending prayers and (((hugs))) to both of you. Hopefully the drs. will get it right this time, Patty will get some much needed relief, and both of you can get a decent, uninterrupted night's sleep. The band might be tighter because of stress, but you have 51 less pounds to sap up your much needed energy.

[whippledaddy 5]

Well, actually, this is about the band, as Becky so rightly pointed out. One thing I have been doing is to kind of log, and make a mental note of my "head hunger". I take note of the weather, the time of day, the events of the day, my own feelings at the time, my physical state at the time of the hunger.

Grey days make me want to eat, and I crave fruits the most at this time. When I'm very tired I crave sweet gooey carbs. When I'm stressed it's on Pasta that I obsess. When the sky is clear, the sun is bright, and my tiredness is from honest physical exertion, then it's protiens like fish, chicken, and beef.

So, if you try, it can all be about the journey of the band. I know that I must get enough sleep to avoid the real baddies, and I know that I must control stress to get rid of other pitfalls of diet. So, perhaps a total spectrum bulb, and a reaffirmed dedication to exercise might help? And I can do it, too. Just as soon as these docs and nurses call back!

Thanks all, for the well wishes. They warm my heart as no summer sun could. And it's comforting to know that no matter what demons I must face each day, there are a group of caring people who stand beside me. I'll take your spirit with me tomorrow as I drive to Cleveland one more time.

Thank you all.

[kimalicious 5]

I do believe you are the taker of the BEST HUSBAND OF THE YEAR AWARD! I hope your wife is better soon and you don't blow a port with all of this stress. My friends come up with a new port joke on a daily basis. Be careful and try to get some rest!

[Curley 0]

You`re quite a guy! I wish I had one like you at home.

Wishing you both some much needed rest & a great 2005.

[Vickums 0]

Aw, Ryan. How sad, scary and frustrating. I'm soooo sorry that you were disappointed by my profession; it makes me so angry that some of us make it so hard for people to get the help they need.

Best of luck today with your drive; I hope your wife gets her catheter fixed with a minimum of pain and stress.

[claraluz 2]

God, what can I say except that I'm sorry this had to happen. I hope Patty's pain is under control now. To be honest, when I look back on my days as a caregiver (for my mom), I think I was angry almost every day. Not at her, of course, but at the incompetent jerks who supposedly were supposed to know how to care for her. I just pray that there are no more fiascos like this for Patty.

Nancy

[DeLarla 22]

I thought there was a worldwide conspiracy against me till I read this post. You're going though the same nightmare as me with my band. Nothing but recordings, unanswered messages, ignored e-mails. Does anybody remember the days when doctors and nurses actually cared about patients? She's a lucky gal, that's for sure.

[La_madam 20]

Ryan, you are awesome!

Patty is a lucky gal ot have a hubby like you. I thought I had the best hubby in the world but he is a distant second to you. I sympathize with you..I know all to well to know what it is like to have your spouse live day to day in chronic pain.Honestly..I could learn from you. Hope Patty is feeling batter after your return from Cleveland.

[whippledaddy 5]

They pulled the tunnelled epidural catheter. Now she's laying in a hospital bed three hundred miles away. I am home with my dogs, and my worries. You see she's infected. It may be at the site. That means there may be MRSA in her spine. Not good. I'm not yet giving up hope, but I am concerned.

So we spend tonight apart. And New Year's Eve, and New Year's Day. And the day after that. She's on a pain pump. she can have 10cc's of Morphine an hour. I called her to let her know that I made it home in one piece. She was worried, she knew how tired I was. She sure doesn't need me to wrap it around a tree just now, does she?

In the last sixteen years we've been together to see each New Year in. This makes me very sad.

Suffice it to say that the five hour drive home tonight was the loneliest of my life. I miss her.

[Curley 0]

Sending you my best & strongest wishes of good luck. You look after yourself too. She needs you strong. Hopefully now your wife is getting the care she needs. If it helps, NYs day is just a day, really like any other. Your love for each other is bigger than seeing the new year in together. And, you are together in mind & spirit at the moment.

In 2005 you will just have to make up for this separation by spending extra time together. I am touched by the depth of your feelings for your partner. You guys sure are soul mates. Words may not make you feel better at this point, but I will be sending a prayer at 12.00 tonight that everything works out great!