Sorry Been MIA, an Update and a Question...

[Caer]

Hi Y'all!

 

Sorry I've been MIA for so long... it's been crazy for the past few weeks and I haven't been online much. My original intro was this post (Hi I'm New,[fiancee stroked during heart surgery 3/17/06])

 

First I want to thank everyone for welcoming me and their support... Second, welcome to all! This is a great place to be!!!

 

Now an update and question...

 

About 3 weeks after Bill's stroke he woke up. At least that's what I told the doctors and nurses. No talking as he has a trache tube in and no movement, but he was tracking me with his eyes and his face would show expression. A week later he started mouthing words. Docs and nurses still told me they werent seeing anything. He would be a vegetable, prognosis bad, too much brain damage. Then I was getting resistance in his left arm when I would work with it - he would push against me. Again, I'm "delusional". This went on for almost 3 weeks. Then one day I went in and there was a therapist and nurse with him and they were going nuts... Bill decided to "play nice" with everyone LOL! "Talking" to the docs and nurses and therapists. Left arm getting even stronger, Right fingers starting to move, head moving side to side, the whole works. No movements in the legs as of yet but no one has done any therapy with them. He had the piece of skull put back in yesterday that was removed after he had the stroke and surgery went extremely well. Oh yeah...looks like there is no brain damage at all... memory is intact, can reason, etc, etc... Still cant talk as the trache tube is still in.

 

They want him to go to (ahem) "skilled nursing" for 60 days but I decided he's coming home with me. I really don't believe that they will do much therapy with him there at all... I think it's just a place to put him to give me 60 xtra days til he comes home. The patient advocate never mentioned any "rehab" was very careful to say "skilled care nursing facility" and slipped and said nursing home at one point. The last thing he needs is to be in a nursing home, he needs to be with family, we have the resources and room. People have volunteered to help and I'm checking out local groups to find help also. His insurance pays for the medical equipment and $2500 towards home health care. They are training me how to do everything from the PT to trache care/deep suctioning/oxygen to feeding/feeding tube care. That's basically what he'll need when he comes home. He can always get outpatient PT, OT and speech therapy ordered later on by the doctor so that's a good thing! So I really believe he will do better at home with friends and family around to help him.

 

Now the question... has anyone here had any experience with taking care of someone at home with a trache tube still in??? If so I would love to hear any and all experiences you've had! Good, Bad, Both, LOL... I know I'll be able to handle it, but would be really nice to hear from someone with experience:)

 

I'll be visiting more now that things have quieted down and all. Won't be MIA so long and will be able to participate... I'm sure as I start down the path as a caregiver I'll have lotsa questions - hopefully I'll be able to help someone else out too!

 

Thanks muchly y'all!

It's great to be back...

 

Caer

[bstockman]

Welcome back and glad to hear of Bill's progress..

I have no experience with a trach tube. before i was a survior I did run a home dialysis machine at home in late 70's for late husband so I do understand the "fear" and wanting to do everything right.

I'm sure you will get answers from other caregivers with experience. When in training don't be afraid to ask questions, take notes...

The first few days will be scary, you will get into a routine and feel more comortable.

 

Also remeber to take help when offerered, you will need some breaks and time to keep your batteries charged and take of yourself also.

 

Best wishes to you

Bonnie

[preacherskid]

I love your post. Almost expected to see my dad's name mentioned somewhere. Nurses and docs also lied and said he wasn't communicating. Must be something they teach in med school. Dad came home with the trache and I was glad to be given the maintenance task. Dad would motion whenever he felt he needed his lungs suctioned. At first I needed lots of suction tubes and gloves. I never saw the need to push the tube until it stopped like the nurses did. The object is to remove the mucous and as you move the tube around with your finger on the suction hole you'll be able to tell what progress you're making. Three times a day (more if needed) I would clean the trache using peroxide which did wonders. They also have these trache care kits that are great.

 

At first it was scary but it can be done. I don't think it's painful, just uncomfortable like gagging on your toothbrush.

 

Let me know if you have specific questions.

[Caer]

How long did they leave the trache tube in??? Is there a point when you know it's time for it to come out? So Bill will be able to talk and eat? So many questions on this one LOL!!!

 

Thanks for jumping in here for me! I'm sure I'll have a bunch of questions for you:) I really appreciate it!!!

 

Laughter and Light:)

Caer

[tom71]

Caer,

There is an adapter made so that you can talk while you have the trach in, but I was not allowed to eat or drink while I still had my trach, that is where you may want to consider the skilled nursing facility, he will need to have a speach therapist do a swallow test on him to be sure it is safe for him to swallow, if not then whatever he swallows could go into his lungs.

God Bless,

Tom

[Caer]

Thank you Tom!

 

We're going to have a speach therapist come to the house as part of his home therapy benefits. His insurance is pretty good with the home health benefits and we've got some $ stuck away also that was sent for therapy for him. I was told with the ratio of therapists there at the facility to patients there that they weren't sure how often he would see someone. There are 2 PT (1 full time), 2 OT (1 full time) and 1 Speach therapist, and there are 130 beds and I believe it is almost at capacity. Someone told me maybe once a week if he was lucky he would see some sort of therapist, maybe twice. I would rather have him home and have the therapists come here...

 

I appreciate your post back! Like I said, any and all experiences are great... the more info I get, the better I can take care of Bill!

 

Laughter and Light:)

Caer

 

 

[tom71]

Caer,

I really wish both Bill and Yourself the best of luck! Your story reminds me so much of my own, When I had my stroke I was dating a wonderful person who stuck by me and helped take such good care of me.I really believe without her sticking by me my recovery would not have been so good. Stick as close to Bill as you can it will mean so much to him! The lady I keep referring to became my wife on Oct 16 2004.So use me as an example there can still be good things to come for Bill and your self.

God Bless,

Tom

[arogers]

Hi Caer,

 

I also wonder why the doctor hasn't suggested sub-acute care - or inpatient rehab, rather than a "skilled nursing" facility. I'm not sure what "skilled nursing" facility means....I didn't see much "skill" at the facility my Bill was at in February.......PT and ST were wonderful, but OT left alot to be desired. And since I watched and his sheets weren't changed the last 10 days he was there, you can imagine I was not happy. Also, Bill went to the facility specifically for rehab and reconditioning and was seen daily by all therapists. This is different, I believe from someone who is admitted primarily for the nursing care. At least it was at the facility we chose.

 

I'm sure you already know, but they won't be able to do a swallow test at home. At least I don't know how they can because of the equipment they use . Bill just had one this last stay in the hospital and they discovered he has lost sensation when swallowing liquids. Hence, they want him to have his fluids thickened to nectar consistency.

 

During one stay in the hospital Bill was placed on a breathing machine. When he awoke from a coma they removed the machine and checked his pulse oxygen level and his ability to breath without the machine. When all the stars aligned they were able to remove the breathing tube. (He didn't have a trach surgically placed.)

 

Sounds as though you have things in place to bring your Bill home. Just keep in mind this is a long-term situation and recovery is a very slow process. He won't be "back to normal" in 90 days or six months. I don't know what kind of insurance he has, but you do need to keep in mind the long term aspects of stroke!

 

I'll be praying for you as you begin this journey!

 

Warmly,

 

 

[Caer]

 

Hi Ann,

 

The only aspect of re-hab that's been discussed is the fact that insurance and a couple doctors who have come in to see Bill and "evaluate" him say that he cannot (ahem) "actively participate in his own therapy" so there is no benefit.

 

The therapists have been teaching me the range of motion exercises and given me websites/info to check out. Basically they said the goal is to get Bill to the point where we can get him sitting in a wheelchair so that he can be brought to the hospital for outpatient therapy to do the rest. They have been wonderful and a huge help to me, but then I guess they're used to me being there after... wow, today it's been 8 weeks since the heart surgery and stroke.

 

Luckily Bill's employer is keeping him on as an employee and paying his insurance premiums in full, how rare and how wonderful! My aunt who was a neurosurgical nurse lives in town and she is a wonderful support! I know this is a very slow, long-term process, but I'm in it for the long haul, and glad to do it! I'm a lucky woman to have had found Bill - he's an amazing man... I won't sit here and say "I know what I'm getting myself into" LOL... I've never done this before... I'll learn... Bill and I will learn together I suppose:) I love him and am just so happy that he is here for me help. We've always made a great team... Plus, I've had 15 hip operations in the past 20 years, so I know he won't be able to push me away, BS me or anything... I know all the tricks - I tried them myself LOL!!!

 

Again, I just want to thank you all for your advice and support. It really is so nice to be able to come here and read your answers not only to my posts but to others' and to look through all the past posts.... lots of info and lots of a "sense of understanding". Something it's hard to find anywhere else. You all are very much appreciated!!! I don't really know how to say how much...

 

Love, Light and Laughter,

Caer

[Guest PERRYS]

I had my trache for about 2 months, I can't say enough good things about the rehab hosp. I was in. (maybe I was taken good care of because the boss of the place is a friend of mine :big_grin: )

 

Anyway, my trache 'hole' was cleaned each day, and it was downsized before it was removed. I had a pacimir valve (sp) installed by my ST and the respitory guy so I could breathe only through my nose and mouth. My oxy level was checked every hour when I had this 'valve' on my trache. After it was removed the 'hole' healed up very quickly, about a week or so, maybe less.

 

My wife was trained in how to deep suction me too, and to do my feeding tube, and to catherize me. each time she would learn how to do something, I had that 'tube' removed, so it was like I was just having her learn it 'just because...' :big_grin: .

 

I wish you well on your home 'experience', I'm 5+ years since my stroke and though we have a pattern of how we go about things and we're still finding out 'tricks' that we can use.

[calendulady]

Hi, Caer -

 

I can certainly understand your wish to bring Bill home as soon as possible. But I know alot about "skilled nursing facilities". Many skilled nursing facilities are connected to nursing home as well as assisted living areas. I personally worked at skilled nursing facility as a registered respiratory therapist in which all the patients had trach tubes and others also required ventilator support (breathing machines for life support).

 

Trach care includes cleaning & changing dressings daily and as needed.

Suctioning is very important in order to keep a patent (open) airway.

Inspection for areas of redness as well as assessment of the color and odor of the secretions can help to catch problems such as infections in the early stages. The goal of trached patients and their care givers is to be able to safely wean the patient to a smaller size tube and eventually be able to remove the tube IF or WHEN it is safe to do so.

 

Whenever a patient had a swallowing study performed by the Speech Therapist, a respiratory therapist was always part of the process.

If you are considering a skilled nursing facility, be sure to take a tour throughout the facility. Have a list of questions for the staff and managers of the facility.

 

For example: what is the nurse to patient ratio? Do respiratory therapists work around the clock? Is there a recreational/activities group that will help keep you husband motivated? How often will he be given PT, OT, Speech, or any other therapy ordered? There should also be exercises given to do while in bed.

 

I think that there are pro's and con's to either decision. The important thing is to make your decision based upon what works best for you.

 

I wish the best for Bill and you.

 

Debbie

[Caer]

Thank you all again for your replies! Sorry for the late reply myself but things got crazy again LOL! Bill was moved to the "regular" floor out of critical care to see how he would do and all of a sudden everything got kind of crazy.

 

The trache is out! WOOHOO! What a relief! He is breathing fine and starting to talk a bit... they did a swallow evalutation but he wouldn't open his mouth for them LOL! It was like once they got the trache out and he was talking, they went NUTS trying to pile one thing on top of another. Then said he had "cognitive problems" because he wouldn't follow directions. I was like, hmmmm.... maybe you're pushing him too hard LOL!!! So I just reminded Bill not to listen to any negative comments and after 3 major surgeries, the stroke, 3 bouts of pneumonia, etc, to take his time, rest and he'll get there on his time schedule. LOL

 

Bill is coming home tomorrow! The equipment is being delivered today (hospital bed, mouth suction equipment(just in case), circulation boots, tube feeding syringes), and home health will be coming out when he gets here to set up PT and OT. His insurance thru work runs out next month but he can get continuation coverage so that's a relief! Then once he is ready he can go to the hospital for outpatient PT and OT (hospital is 3 minutes from my house). They will actually pick him up and drop him off.

 

So, my days at the hospital end tomorrow and days as a caregiver at home start tomorrow...

Bill's arms are getting really strong, especially his right one, he can actually hold onto the side of the bed when I need to roll him to change him and help which is really nice. He may or may not have a PICC line in, I'll find out today, and will find out if he will still be on insulin as well and blood pressure meds. But at least the trache is out and that was the biggie, without that it's going to be alot easier and less worry - not that it's going to be easy, but that was going to be the "BIG" issue.

 

Also, A BIG WELCOME to all the newbies!!! You have found a wonderful place here! The people are a godsend:)

 

Love, Laughter and Light,

Caer

[4mom]

So today is the big day! I hope everything is going well. It is a whole new world when you come home. I like you couldn't wait to get my mom home. I had been away from my husband and 2 year old son for 2 months. It was so hard. I just wanted to get home and settle in a routine. It was so depressing being at a hospital or rehab facitlity all the time. I was doing all the work anyway. Once they showed me how to do something I took over on it. Mom had the trech also and we used to sit and wait for respitory to come and put on her pacimere valve before she could start her therapy. I finally just started doing it myself one day. I just took charge. I think in the end it has made me allot stronger as her caregiver. I remember how tired I was. I barely got any rest at the hospital because I did do it all and I had to sleep in a chair. I even got to the point where I did all her feedings. All they did was clean her room and give her any meds and only because I legally couldn't. I remember calling for them to put her back to bed one day. They always used 2 CNA's to do it. We waited for 45 minutes and she was really hurting. She begged me to do it. I had been shown how to do it and had done it a couple times but never without someone there to help incase something went wrong. I gave in and did it. From that point on I had to do that all the time. I guess it took just doing it to get the confidence. I learned so much, before this I was a head teller at a credit union. No nursing experience at all.

All I can say is get ready for allot of ups and downs. I try to just roll with the punches. There are really good days and really bad days. There are days that I feel so tired I don't want to function. Be patient with yourself. It is hard taking care of a house and your loved ones, but it is worth it. I do get tired but I wouldn't change my decision.

 

Take care I hope to hear how it is going. This site has been wonderful for me.

Ruth

[Caer]

Thank you Ruth!

 

Yes, at about 3pm the ambulance is supposed to pick Bill up at the hospital (about 3 minutes from my house) and bring him home! All the equipment is here except the tube feeding equip. and food which they are delivering about 5ish, I even talked them into a pump so his digestive system won't get really out of whack LOL! They also delivered a Hydraulic Lift w/sling which was a really nice surprise! The nurse is coming out tonight, one will have to come out for the next 2 days to give him meds via the PICC line, but that comes out on friday...

 

They want to use the bulk of his home health benefits for PT, OT and Speech Therapy. Plus, I just found out his 90 day leave of absence from work will be up and his ins will be up on 6/14, so they gave me a # to call for continuation coverage for him. Gonna call next week to get that going, I just really want to get Bill settled in over the next few days.

 

Luckily I don't have to worry about meals, cleaning, etc as my Mom has always been in charge of that and refuses to give up being in charge there LOL! So that will help immensely!

 

Now that I'll be home I'll be able to be online and participate on the boards more as well which will be great - I know it will be tiring, but I really think it will be less tiring than going back and forth from the hospital (even tho it's so close) as (same as you were) I was basically doing everything there anyway too LOL!!!

 

Sooo, again, thanks for the encouragement! I love hearing everyone's experiences as they are such a help! I'm sure once Bill is able to do a little more, he will most likely be joining as well!

 

Love, Light and Laughter to all!!!

Caer