CALS Roll call

[scaredwifetx]

Janis, I am so sorry to hear about Douglas and my thoughts are with you and Douglas. Laurie is as usual 100% correct on the right to administer the meds. I gave my husband his meds while in the hospital and my mother's until the had their charts and meds updated and were able to be given by the hospital.

Kim, my heart goes out to you. 3 months is not long and it will take some time. Just know that your father would not want you to be in such unbearable pain and would want you to remember the good times. Trust me I know it hurts and it's overwhelming. Give yourself some time and until then bring your thoughts back to the good memories.

 

[Janis J]

Laurie, do you have a reference I can point to about my right to administer meds when the complain?

Douglas is on oxygen because his oxygen saturation has been about 88 and with oxygen at 3.5 it's 94 or so. Until recently his FCV (FVC?) was 103 so they saw no problem with continuing to use CPAP. At the last clinic a couple of weeks ago it was 80 so they had a pulmonologist do more testing to prescribe AVAPS. The hospital said it had found a machine for him but it a respirator, not AVAPS or BiPAP. I'll do lots more work today to find out if I can pick up his machine (I've heard nothing about when it might be ready) or if we can borrow one from somewhere else if the hospital doesn't have one.

Thanks so much for the concern and advice.

Janis

 

[Janis J]

We worked with the nursing staff to get his migraine medicine moved so it doesn't need to be sent up one pill at a time from the basement pharmacy. His oxygen saturation is back to normal, so no more supplemental oxygen. The infection is under control and we're going home this afternoon. The hospital never did come up with a BiPAP, AVAPS or Trilogy for him to use here, but they did find out that his AVAPS was held up because of insufficient information being received by the company that will provide it and they and the ALS clinic nurse pushed to get that mixup resolved so he'll receive the AVAPS early next week.

When I mentioned to the doctor that I had the right to provide his usual meds as long as I report them to the nursing staff, he looked horrified and mumbled something about liability issues. I'd like more info about that in case we end up in a hospital again.

Janis

 

[gooseberry]

Sounds like we are all in a sucky place. Hope everyone gets a little sleep tonight and a good day tomorrow. We all surely need it.

 

[lgelb]

Janis,
So glad you are able to take him home, and that the infection has improved.

As for that liability, it's just a scary word for staff meetings. I've never seen a pt or family member asked to sign a waiver for dispensing your own meds. If you had your own BiPAP, for example, most hospitals would have been thrilled for you to bring it. Your legal rights to sue the hospital should they screw up otherwise remain intact.

Staff can make it into a big deal because they've been to the scary meetings and are not attorneys. I fully support and you can note nurses' right to chart, "Patient's wife insisted on giving him metoprolol ER 200mg at 1400." Implication: "I threw myself in front of the bus but it didn't work." Sometimes, if there's time, requesting a pharmacy or physician consult for "permission" makes it less emotionally charged.

The last time my husband was in the hospital (where we left AMA after a night I've described here before), his four BP meds were never ordered [nor his two diabetes meds, but hey], despite three high-risk aneurysms, history of aortic dissection, and tissue-paper vessels, aka Marfan. I let his meds ride for a few hours, as he was in severe blood loss with low BP.

Then I saw his BP rising on the monitor as his INR stabilized. What do you think I did after the nurse said, "The only medication he's getting here will be through us" but couldn't tell me when that would be? Hint: he lived almost two years after that.

Let us know how Douglas & you do at home...

Best,
Laurie

 

[Janis J]

Thanks, Laurie, I'll be ready to go all Mama Bear if he ends up in the hospital again, although I think he'll want to avoid hospitals at all costs now.

Douglas is still worn out from the hospital stay; he had a residual headache for a couple of days after two days of migraines when he didn't get his migraine meds in time in the hospital, and he feels that his breathing is worse, possible due to being on oxygen for 3 days. When I finally insisted that they check his O2 sat without oxygen it turned out to be fine. I told every doctor that O2 can be very bad for PALS but they were fairly condescending when explaining that the supplemental oxygen was necessary. Bah.

Janis

 

[Shampton0708]

Just checking in for roll call. Found this forum and joined yesterday. My wife of 20 years was diagnosed with ALS in Oct 2015. Confirmed by Mayo Clinic (Jax, fl) in Nov 2015. So here I am searching to educate myself and trying to provide the best care for my love. She suffers with breathing, swallow and choking. Still mobile but has declining speech. On rilozule and participating in the trial for Terasimptiv. Going for a gastro line this week. A little freaky not sure what this new addition means. Hoping she can put on a couple pounds.

Sandy

 

[lgelb]

Janis, Douglas/you (assuming you have his healthcare PoA) have the right to refuse any intervention, including O2. They won't kick you out, promise. But hopefully, you won't be back!

Sandy, welcome, and so sorry to hear about your wife. Yes, many people gain back weight with a tube and the right stuff in it (many here believe that real food blending and/or an alternative formula such as Compleat or Liquid Hope is preferable to corn syrup-based Jevity/Ensure/Boost). We'll be thinking about her this week as hopefully she has as smooth a procedure as possible. Is she having it done in the radiology dept? If you don't have a BiPAP yet, you might ask about her using one of the hospital's during her procedure, which can be taxing when breathing is tough anyway.

Best,
Laurie

 

[Shampton0708]

Yes she has the BiPap machine, helping alot. She is having the procedure done at Mayo Clinic I assume radiology will be performing. I will ask today when we are there. Cindy will be bringing the BiPap as they said this will help make the procedure go better. Fingers crossed and thanks for the advise on nutritional formulas.

 

[Gembead]

Well BJ had another fall today, a bit sore and bruised but no major damage, he is starting to think his breathing is now being effected and is going to ask his Dr about a peg and having a lung function test done. We have been really busy with rebuilding the new house, I have spent 3 days painting balustrades, the house is starting to look really great and I'm starting to get excited about moving in, I will post some photos soon.
Love Gem

 

[gooseberry]

Checking in a few hours early while I can. Julien got things confused and was in a major meltdown when I got to school to pick him up. My phone doesnt work all thru the hospital so I didnt get the messages. Steve has some surprises already at his assessment. I thought it would be done in 2 days or less but they are talking Friday morning before he is released.. I am so tired tonight and my feet ache....

 

[scaredwifetx]

Steph, I am so sorry for Julian. I know this must all be so tough for him. EXTRA prayers for you. Please remember that you need to rest even if you are made of steel. I am finding that out the hard way and am now pretty sick and am a mess. You have so much on your plate. You are a very strong and loving wife and mother.

 

[djbailey]

Still here and checking in. This week I believe we have made one of those advancements that you do not want to make. My PALS eyes have started to be affected to the point she is not able to move them very far side to side or up and down and her ability to communicate with her tobii has been severely affected. She is now on the trilogy 70-80% of the time, can't talk, can't move anything below her neck and can barely move her head. I truly miss our ability to communicate, it makes for a very long day. and of course sleeping more then 2 hour before fixing a mask or getting medication at night no longer happens. Well that's my little rant for this week.

 

[gooseberry]

Dj, one thing from our support group session this week talked about communication. She can most likely still hear you so you can offer words of love and comfort.

 

[avnl]

I have not been participating, not quite sure why. M has been transferred from Yale New Haven Hospital where he was admitted for Baclofen withdrawal on Valentine's Day. Very sick in ICU. He has made progress from Plankman back to Gumby. He has been at the rehab facility less than a day and he informs me he is leaving in 2 days no matter what my wishes. Currently having urinary retention which could be due to his recent anesthesia, his pump dose being too high, disease progression, or a combination. I would think he would want this figured out prior to insisting that he leave. He is quite angry and I am the target as he sees me as the obstacle to getting home. Thinking with my head I know that he is angry at his disease but my heart is feeling the pain after 10 days of fighting for his care. Tomorrow I will speak with staff and hope they can change the outcome. I have withdrawn because I cannot do anything right when I am with him. I told him if he wants me there I will come but not to be verbally abused. So here I sit in a little cottage on the grounds of Gaylord Rehab in Wallingford CT 2 hrs away from our house.
I also wanted to post to be a resource regarding the Baclofen pump. Despite this setback I have no regrets about his having the pump. I have lived in fear of pump malfunction and I have faced that fear. He got so sick because our local hospital did not recognize the issues and the pump person was not responding. I drove him to Yale where they heard what I was saying and took good care of him.
So that has been my past two weeks. So shout outs to all the queens and kings. It feels good to be where my frustrations are understood!
Anna