Dad

[Guest kmk]

Sorry it's been a hard go this last week. Things were starting to look up and now you've had a setback of sorts. Maybe the agitation and distress is due to the change in his living situation? Your dad was all geared up to go home with you, now he is going with your sister. I don't know about you, but I don't do change well, and maybe, just maybe, this change might have precipitated a change in your dad's outlook. We all feed off the emotions of those around us, and I know you are presenting everything in teh most positive light. But are you maybe concerned and/or upset about the change in the living arrangement? Maybe unknowingly (because I know you are the most positive person you can be around your dad) you might be sending some negative vibes that he is picking up on? I'm not criticizing you Rhonda, by any means. You are a soldier of the best kind. A caregiver on a par with none I have ever seen. I'm just thinking out loud here and wondering if maybe all these changes coming up in the living situation might not have him upset.

 

Hang in and please continue to keep us posted!

 

Kathy

[jriva]

 

 

I am at a loss right now on what to do for him, other than assure him that everything is OK, and that he will be leaving there soon.

 

Cinder,

 

I know that I'm not the only person in your life to tell you this, but for your own peace of mind, you have to keep reminding yourself that many of the things that happen with your dad are out of your control. You cannot and are not responsible for everything that goes wrong, every set back your dad goes through.

 

I disagree totally with what Kathy is saying about sending out negative vibes. Sometimes when you've got foreign objects sticking out of every part of your body, you just plain get sick of them being there. It's as simple as that. You pull at them because they are annoying, with no forethought or motive other than to get rid of the annoyance. I also know that you are the best at maintaining that 'positive upbeat' pretense in front of your dad, even when your heart is breaking and are feeling just the opposite of upbeat and positive. I also don't think it does seriously harm if our true feelings do show through occasionally to those people who know us best.

 

You do what you have to do and remember that we are all here if you need us. And remember, you don't have to keep the pretense up for us. We caregivers have all been on this roller coaster and we understand....

 

Jean

 

 

[cinder]

To all die hard Dad fans.

 

Dad is doing extremely well. And as many of you know, he is being released to home on Monday. And as I blogged, Dad will be coming to my home, not sis'. Although she and her husband will be involved in his care.

 

Today when I went to see him, his oxygen cup was off of his trach and laying to the side. I asked him if he had put it over there, but the nurse tending to his room-mate said, He didn't take it off, we did. He hasn't been on it all today.

 

I looked at Dad's saturation level and saw it was 97. My Dad was maintaining above 90% on his own!! No help anywhere. No O2, no humidifier, no nothing hooked to his trach! His trach was even capped with his talking aid and he was breathing just fine guys!

 

His suctioning is down to once in a blue moon, his breathing treatments have dropped to 2 times a day. He has no infections and his blood count hasn't dropped in weeks. Guess what. Dad is well. Hallelujah.

 

By this time next week, I will have every medical appliance in Indiana in my house. And it looks like at least some of it can go back. For him to not need all the different oxygen aids, well let's just say it's a major relief. I also saw Dad eat a hamburger the other day (with whole pickles on it too) and he did great. In time I hope both the trach and the feeding tube can be removed. But for now he is maintaining so well, that I'm not changing anything.

 

His emotional levels have evened out, and he appears more settled inside. His room-mate, Michael (poor guy has to be stuck with a name like that) has ALS, and lives there. He doesn't talk and can't move on his own. I see Dad looking at him a lot. Even though Michael doesn't talk to Dad, he is another person in the room. Therefore company to Dad, I think it helped. Michael's wife is there daily, and even assisted me in cutting Dad's hair a few days ago. Nice people.

 

Anyway, Dad is doing great. And I see no immediate problems looking to jump us before Monday. I almost hate to post this, because every time I do... Everyone just pretend you didn't read it. But thoughts that everything continues to go well are appreciated.

[Guest greyhe]

Hey now!!!!

 

Michael is a perfectly good name! I'm rather partial too it myself.

 

I'm glad you're dad is doing so well (I'll pretend I didn't read that if you pretend you didn't either).

 

Michael, the coolest name out there

[bstockman]

Only sending thoughts...didn't see a thing

 

sending hugs too

 

Bonnie

[minime45]

Sending good thoughts as well.

 

Mary

[cinder]

Just a quick update on Dad. He is not home.

 

OK, I was going to leave it at that, because I thought it was funny, but I will add a little more.

 

Dad is now over a week without his outside oxygen source. I started rephrasing how I said that, because saying, Dad has been without oxygen for a week doesn't sound right...

 

He is in very good shape, and there are no health problems being forseen. In fact, he appears to be as healthy as he was last year, when all of this happened.

 

I still have none of his equipment here, but have made a friend at the med supply place that is taking over, and appears to be on the ball. She thought she had everything on the way unitl I talked to her today. And she realized she had no orders for Dad's feeding pump. I told her that was a problem, because Dad gets cranky when he has an empty tummy...for weeks. So she is getting that ordered, and we plan on having it all here by Monday.

 

Dad's meds are another problem though, as no one is listening to me on the 3 month scripts I need, in hand, at time of release. I need a 3 month script for each of his meds, as I have to mail them to the drug people. Dad is a factory retiree, and his insurance goes through a delivery service on meds. It would have been great to have them already in the mail. But heaven forbid that had happened. So now I have to have a weeks supply of meds while we wait for the others in the mail. What a mess.

 

I have threatened the life of the crazy lady who was supposed to have all of this under control. My visits to the facility are now being monitored. They search me when I come in, but so far I like it. (I made up this last paragraph...)

 

 

[bstockman]

If you need help with the crazy lady, let me know, we'll walk in seperately, so they won't be searching me...lol

a thought..can you ask the dr's nurse to fax the prescriptions to the mail order service .... that way you won't have to wait to get them and mail them, would save a few days time ...

Bonnie

[cinder]

Very rare for me to do 2 updates on Dad in one day. But I had to tell someone.

 

Dad has been having testing at night to get the numbers needed for insurance to pay for his bipap here at home. Well, guess what. Dad failed the test and insurance won't pay for the bipap! Isn't that great!!

 

I need to work on how I phrase things I guess...In other words, Dad's sleep apnea has improved to the point where, medically, he doesn't need the bipap. So insurance refused it. Now do you understand? lol

 

I freaked when I heard this. I found out about 10 minutes after I posted the above update. One HUGE thing out of the way for Dad! Plus, that bipap through the trach thing was what stopped him from coming to the facility closer to home a few weeks ago. Another plus is that one more piece of equipment that he doesn't need. I am having Dad's PICC line removed tomorrow (a PICC line is a small tube inserted under the arm that goes to the heart, medication can be given there, and some lab work can come from there also). So no more PICC line flushing and yet another major concern gone.

 

I called sis when I found out about the bipap and then called and talked to the facility. Dad's trach was being used mainly for bipap treatment now, as his suctioning is almost completely stopped. So now we are debating asking for it to be removed, as the bipap is no longer needed. This is an out patient procedure, that can be done before he comes home next week. I can't tell you how great it would be to not worry about that trach, but his doc will have to give me his input before any decisions are made.

 

PS. Bonnie...that was a good one. lol I'll have to check into it tomorrow.

[jriva]

 

Outstanding, Cinder!!!! I love it that all your ducks are lining up for you and your dad.

 

Jean

[MissShannon]

Wow having read all 11 pages of this i just want to say how inspiring your strength and love for your dad has been thru all of the ups and downs.

Thank you for inspiring me to keep going!

my thoughts and prayers that things keep looking up for you and your dad,

/hugs

Shannon

[cinder]

It's official. I have every medical appliance in Indiana in my house. I set it all up, and Dad's room is ready. The only thing missing is (you guessed it) Dad.

 

Through a mess up, no transportation was arranged for him, so he is set to arrive home at 3 PM Wednesday. At that time, visiting nurse will show up and make sure all his tubes are, ummm, tubed. Do vitals, and run through things with me. I've asked that his cath and outer cannula be changed prior to release, so that will be 2 things that I don't have to schedule for a few weeks. I have not been able to verify the exact date of his last immune globulin injection, and that is a major one to know.

 

The doc is playing dead, and won't get back to me on Dad's needed 3 month scripts. But I know where he lives, and I am going to picket in front of his house later. I may need bail money, Mom.

 

Dad is doing very well, and I will get the results of his blood gas test soon. This will verify to me, that he no longer needs an outside oxygen source. I had them do one, because I don't trust them...lol

 

All in all things went pretty smooth getting everything in place, I will add a little more about the day later, in my blog. I don't think it belongs here.

[Guest greyhe]

Let me know if you REALLY want to ask mom for bail money. I'll make sure you do your picketing inside where you will be cooler.

 

Michael

[jriva]

 

 

Hey, Cinder, we may both need bail money because I'll come down there help you picket that doctor. Does he have a prescription refill line? If so, call there and spam the thing with a dozen requests for what you need....I say as if you haven't already done that.

 

Jean

[cinder]

DAD'S HOME!!!

 

Dad, through many battles and struggles, after a long year away, is home and settled in his bed fast asleep.

 

Except for feeding pump chaos (which isn't fixed) there were no unforeseen problems. He has a ton of meds, breathing treatments and appliances to use, but is in great spirits.

 

My sis is coming every morning and doing AM meds, basic hygiene and AM breathing treatment and trach change. She will wake me before she leaves, then it's my turn. I will do full bath and bed change and breakfast. Then onto the rest of the day. In the late afternoon, she or her hubby will come back and stay with him, while I mow or run around. My brother is taking up slack by doing weekends for a few hours each day.

 

They all showed up for when Dad got here, and helped get him into bed and settled. Then we all took a crack at trying to figure out what we were doing wrong with the feeding pump...lol No one fixed it, but Dad ate white castles and a milk shake for dinner, and I can still get plenty of liquids into his tube with out the pump.

 

Home nursing is coming to asses him in the AM and she will get the pump running.

 

I have to go for a bit, because I hear that he needs suctioning from the monitor I have for such an occasion.

[jriva]

 

 

Cinder,

 

I am grinning from ear to ear! I couldn't be happier for you, your dad and your whole family. How cool that you were able to give him the meal of his choice for his homecoming: White Castles and a malt.

 

It's really great that your sister, brother-in-law and brother are pitching in and pulling together. I wish you all a very long and successful run at share-caring.

 

Jean

[swilkinson]

Hey Cinder, great stuff. After all your efforts he is finally home! We will be praying that all goes well for him and with all your team as you look after him.

 

Glad you have that much needed family support. If it is a team effort it is much easier than if you are the sole carer. But you will wonder where all your time goes now. I know all caregivers are short of that essential element.

 

We will all be here, waiting for the next update.

 

Sue.

[minime45]

Hi cinder,

I am delighted your Dad is finally home.

He ( and you) must feel so much better. After a little while you will have the routine cracked, everything will fall into place and you can enjoy being with your Dad again.

Not many daughters would do what you have done. I think you are an inspiration

Mary

These are for you

[Guest greyhe]

This is a great climax to the Ballet of Cinder and Her Dad.

 

I know you'll have your hands full, but don't be a stranger. I have to have my virtual sis to tease in chat .

 

I'm so happy for you and your dad. Nothing can compare to being hun free.

 

Michael

[bstockman]

SOOOOOOOO HAPPPPPPPPY for you both and delighted that you have help.....

Know you will be busy, but try to stop into chat when you can, Michael will be lost without you and I don't want him picking on me...Mom and I are the referees.. Bonnie

[cinder]

Just giving everyone a quick update.

 

Dad is doing very well. We are starting to get a routine down. There's so much to do. I finally got his room organized and inventoried (that's how much stuff he has). He is having a lot of confusion, but that was to be expected. Today he was much better.

 

Physically, he had a couple of problems that I wasn't aware of. We are trying to work through them. Hopefully we can clear them up without a future crisis.

 

Tomorrow is the first visit with the nurse who will see him every week. She looks at me wrong and she's mine...

 

Dad is happy to be here.

[bstockman]

Glad to hear things are going well..and that he is settling in.

As for the nurse...just pile on the charm. win her with sweetness....

Take care Bonnie

[givincare]

...And if the sweetness doesn't win, I'm sure you still have your "knockem in the knees" pole ready.

Glad to hear things are going well for you both.

Kristen

[cinder]

A couple of days ago, Dad

[jriva]

 

 

Cinder,

 

Your update is most welcome and appreciated!

 

I'm glad to see that you still have your sense of humor and your families' continued physical and emotional support. That was a funny line you gave to the nurse....and scary because when it comes to your dad, you DO know everything.

Not surprising that the doctor believes in your power and ordered the tests.

 

You and your dad are in my thoughts....stop by whenever you can.

 

Jean