Neuro visit and Intrathecal Baclofen Pump

[Lazarus]

I have read a lot about the baclofen pump. I think it is made by Medtronic and I read their news. When it works for a patient it is really helpful and I hope you are a good candidate.

[Sunshine 2]

My trial of 50mcg Baclofen inserted into the spinal canal was successful, ie I am a responder. I was in the outpatient hospital for 6 hours post procedure which was easy procedure as procedures go.

I had zero pain after the procedure and was able to increase my walking from 2 steps to @200 feet until I felt spasticity. ( typically, Its painful to walk 2 steps from the chair to the toilet all day usually, until 4:30pm at which point the meds finally log in and I walk 1000 steps until 7:30pm daily but with pain).

I had zero pain the whole time post procedure: This is remarkable. I have never dropped below 2 to 4 since becoming so ill. And usually hover 4 to 8 all day long.

I am now waiting for a surgery date, and the holidays aremesssing it all up, so it might not be until after Xmas that I am assigned a date. I figured it will be mid to end of January. But, I don’t really know.

The post surgery will be rough. It will take months to wean off of all my meds and there will be bumps inthe road with breakthrough spasms. But I will cross those bridges when I get there.

PS What is it with RNs who don’t consistently wear their masks??!!

[stillstANNding]

I can not imagine a nurse not wearing a mask! The pandemic is in full swing, OMG.

Such a happy, promising report, Sunshine. There is true hope. Happy New Year!
ANN

[Virginia]

Sunshine, this makes me so happy for you. Finally, maybe a light at the end of this long tunnel you have been in. To get off meds would be a wonderous thing. Even for me, I am on so many that about 1 1/2 to 2 hours after I take them I am often too wiped out to do anything until the afternoon. I can only imagine what you have been going through.

So glad you sought this treatment out. Smart lady.

As for a nurse not having on a mask a hundred percent of the time right now is very foolish. Doesn't she realize it only takes a drop or two to get through to you.

[stillstANNding]

Virginia - And an instant for her own droplets to be spread. Oh, my!

ANN

[Lazarus]

All my nurses during my infusion the other day wore masks and I heard them reminding any patient who had slipped mask to put it up again whenever the nurse had to approach the patient. Where I go we are all at least 20’ apart.

[Sunshine 2]

All my nurses during my infusion the other day wore masks and I heard them reminding any patient who had slipped mask to put it up again whenever the nurse had to approach the patient. Where I go we are all at least 20’ apart.

You are lucky. I had to harangue my nurse to move the next patient over a couple of more feet at IVIG. And I saw no nurse correct patients who had their mask below their nose.

I had complained to corporate level. I will again. This is not acceptable. IMO.

[Earth Mother 2 Angels]

((((((Sunshine)))))) ~

This is such an excellent result, and I join everyone in being happy for you. What a tremendous relief this will be for you, especially after you've gone through the weaning of your other meds. Your quality of life will improve significantly.

There is absolutely no excuse for your nurse(s) not to wear a mask the entire time they are in the facility, particularly when treating a patient. Obviously there is the risk of COVID, but other germs as well, like MRSA, and the flu.

Had I been in your situation, I would have immediately said tersely, "Where is your mask? Please put one on. Thank You!" Then, I might add something like, "As if I don't have enough problems without being exposed to your germs!"

Oh the many times in ICU and ER, when a nurse would do something atrocious, like pick up something off of the floor then turn around to work on my son, or drop a Yankauer (oral suction catheter) on the floor, then pick it up and hang it back on the IV pole. Fortunately, Jim and/or I were there to notice these things and correct them on the spot.

I'd say, "Please change your gloves," and when they asked why, I'd reply, "Because you just picked up something off of this germy floor with with them. I don't want you to touch Jon/Michael with those gloves." And with the Yankauer, "He needs a new Yankauer, because that was on the floor. You can't put that in his mouth! In fact, bring in 3 or 4 of them, so I don't have to keep asking you for them." Their response was always, "Oh ..." and chagrin.

I was never mean, but I reinforced that I was there to protect my children (or Jim). "I only have one patient, where you have many."

So, if you see something, say something to protect yourself and everyone in proximity. These heroes work long shifts and treat many medically complicated and critically ill patients, and now the onslaught of COVID patients. They are human and make mistakes.

We think it should be rote for these medical professionals to wear a mask, and it should. But, if they slip up, we have to mention it for everyone's benefit and safety.

Praying for continued good news in your Baclofen Pump journey ~

Love & Light,



Rose

*Virtual Hugs Are Germ-Free!

[Sunshine 2]

You and Jim did a great job protecting your boys. Thanks for sharing that.
I do assert myself, and it doesn’t seem to do a lot of good. The changes are temporary.
I will keep doing that.

[Lazarus]

((((((Sunshine)))))) ~

This is such an excellent result, and I join everyone in being happy for you. What a tremendous relief this will be for you, especially after you've gone through the weaning of your other meds. Your quality of life will improve significantly.

There is absolutely no excuse for your nurse(s) not to wear a mask the entire time they are in the facility, particularly when treating a patient. Obviously there is the risk of COVID, but other germs as well, like MRSA, and the flu.

Had I been in your situation, I would have immediately said tersely, "Where is your mask? Please put one on. Thank You!" Then, I might add something like, "As if I don't have enough problems without being exposed to your germs!"

Oh the many times in ICU and ER, when a nurse would do something atrocious, like pick up something off of the floor then turn around to work on my son, or drop a Yankauer (oral suction catheter) on the floor, then pick it up and hang it back on the IV pole. Fortunately, Jim and/or I were there to notice these things and correct them on the spot.

I'd say, "Please change your gloves," and when they asked why, I'd reply, "Because you just picked up something off of this germy floor with with them. I don't want you to touch Jon/Michael with those gloves." And with the Yankauer, "He needs a new Yankauer, because that was on the floor. You can't put that in his mouth! In fact, bring in 3 or 4 of them, so I don't have to keep asking you for them." Their response was always, "Oh ..." and chagrin.

I was never mean, but I reinforced that I was there to protect my children (or Jim). "I only have one patient, where you have many."

So, if you see something, say something to protect yourself and everyone in proximity. These heroes work long shifts and treat many medically complicated and critically ill patients, and now the onslaught of COVID patients. They are human and make mistakes.

We think it should be rote for these medical professionals to wear a mask, and it should. But, if they slip up, we have to mention it for everyone's benefit and safety.

Praying for continued good news in your Baclofen Pump journey ~

Love & Light,



Rose

*Virtual Hugs Are Germ-Free!

Excellent. Perfectly said.

[Earth Mother 2 Angels]

((((((Sunshine)))))) ~

Thank you ~

Jim and I were vigilant about our boys' care, which I am sure is one reason why they lived as long as they did. We gained the respect of the ICU doctors, nurses, and therapists, because of our devotion to our boys, as well as our knowledge and experience from caring for them. Nurses asked me to show them "the tricks" for G Tubes and colostomies.

We always maintained our sense of humor, for the sake of our sons, ourselves, and the stressed out medical professionals. Our criticisms were balanced with praise for their efforts and an understanding of the pressure they endured daily. We also periodically brought in fresh baked cookies, which was quite helpful for morale.

I think that all medical environments should require staff to wear a disposable procedure gown, gloves and masks, possibly even shields. It doesn't matter what the procedure, test, or exam is; this gear should be mandatory.

What COVID checks did you have prior to your appointment? Was your temperature taken, before you could enter the facility? Did they ask you whether you had any symptoms or had been exposed to anyone within the past 10-14 days? Were you given a COVID test?

I find the temperature-taking to be a bit absurd, because just like the flu, or any other virus, your temperature can be normal in the morning, and later that afternoon or evening, you could have a fever. Or it could be brewing and wait until the next day or the day after that for the fever to take hold. Add to that the possibility that a person could have COVID and be asymptomatic.

I also wonder about the validity of COVID tests. On the day of the test, a person could get a negative result, but days/weeks after that, the result could be positive.

This is why it is vitally important that we all wear masks, without exception.

Please do complain to the corporate level about this. It's not a minor infraction or something that should be swept under the rug. You have a right, as a patient, to be protected as much as possible from infections of any kind.

Meanwhile, I remain very happy that you are a candidate for the Baclofen pump and the future awaiting you once it is in place.

Love & Light,



Rose

*Virtual Hugs Are Germ-Free!