Slow Snowy Saturday

Yeah, more snow. Not too much though. I did see them taking snow from the parking lot with a dump truck. Maybe getting ready for the next big one.

Nothing too exciting to report. She had a good day. Slept off and on, but when awake, she was very alert. I showed her the clothes I went and got Jonah & Paige, she approved with a smile! Her secretions were less thick today, which is good. They are doing some stool cultures to check for blood because of her hemoglobin. She would be glad I shared that one with ya. She didn't fight about getting up this evening. They had stopped her blood sugar checks and started them up again, not sure why, will find out about that though.

I tried to do the therapy with her today. I showed her a small ball and her comb. I asked her to look at each one and she did. I ask her which one was used on hair. She looked right at me and gave me a big eye roll. I took her hand and showed her the comb anyways and told her about it even though I think she knew and thought I was the stupid one (not that she is). Maybe tomorrow I will do the yes/no questions with her. I tried to get her to do some of the swallowing exercises today like sticking her tongue out and smiling and puckering. They help strengthen the muscles. She didn't cooperate though. I do believe I saw her later out of the corner of my eye sticking her tongue out. I didn't let her know I saw her.


I had the chicken today, it was good. They had a salad with candied walnuts, dried cranberries and apples in a vinaigrette, that was good too. For dessert there were many kinds of mini cheesecakes. I couldn't decide which to take and the girl told me they were free take one of each, so I did. Didn't want to hurt her feelings or anything. I snacked on them throughout the day. I didn't used to eat anything in front of Mom, but I sometimes do now. I tell her she will be able to eat these good things again after she relearns her swallowing and should do her exercises. I don't know if that is being mean or not because she honestly doesn't seem that interested in eating.

I will put up a few more pics, they will be of her room and her view out the window to the courtyard.

Bunches of Love,
Angela

babiak3@yahoo.com
www.kindredhospitalsyc.com
www.payitforwardhouse.org

Snow Again

Woke up this morning to more snow and of course I was going to go to Wal-Mart, but I did go! It has snowed all day, but nothing has really stuck, it has all pretty much melted when it hits ground.

When I got to the hospital this morning, ma was sleeping. Woke up and gave me a smile though. I went down and ate at the cafeteria for their holiday dinner and it was free! Even better! I chose the manicotti and garlic bread and mashed potatoes. Some combination huh? Ate a whole bunch of fresh fruit too. I was told that they were doing it again tomorrow, but not sure. If so, I will have the cranberry stuffed chicken.

OK, you want to hear about Mom and not what I eat right? Good day overall. I was told she was awake all morning. Good vitals all day. A substitute speech therapist came in to work with her and I got to watch. She told me some things that I can do to help her. Her physical therapist said she did well today and she was resisting a bit which he says is good. He is still working on getting her an order to go down to the "gym".

She got mad because she didn't want to get up again tonight and I told her she had to.
It's so hard because it is like I am the mom now and she is the child. She was mad enough that she wouldn't even smile at her cardio boyfriend and he noticed! The hematologist said her hemoglobin was a bit better today.

I had a talk with her about the situation we are in together and told her how it was!! She turned her head away from me and I turned mine from her for a bit. When I looked at her next, she winked at me. Maybe she thought about it or she forgot, wish I knew what was going on in her brain.

I watched TV with my 2 house mates this evening. It is nice that we all like each other and get along. We do alot of talking too. Debbie is here for her 22 year old son who was in a car crash and is paralyzed. They are from around St. Louis. Mike is here for his wife. I know he said she has had problems with her lungs for along time. He is from Morris I believe, about an hour away I think.

I am going to post a few pics of Mom's room tonight for you, I think they will end up at the beginning because I am not sure how to get them where I want.

Bunches of Love,
Angela

babiak3@yahoo.com
www.kindredhospitalsyc.com
www.payitforwardhouse.org

Yesterday--Yuck Today--Yay

Like the picture? It is a self portrait. I am actually surprised she let me take it.

Yesterday was stressful and blah for me. When I got to the hospital I didn't think Mom looked right. She was having really labored breathing too. I had to go down to the social workers office to work on some insurance things which are absolutely a nightmare. I don't know if I could do that for a living. There was a scare in the morning, they thought she might be having another stroke, but she was not. She had alot of mucus yesterday and alot of plugs. So she got a warmer for her aerosol and that has seemed to help break things up.

The hematologist is worried about her hemoglobin. He says it is too low and if it doesn't improve he wants to do a bone marrow biopsy. I am not too sure about that one. I asked him today what her numbers were and what he wanted them to be. He said yesterday it was 9.1 and today it was 8.8 and for her it should be around 11 because she is sick, normally a 12. He is going to keep an eye on it over the weekend.

By the way, here is what she has with her trachea.......TRACHEOMALACIA

The gastro doc checked her yesterday. Here is what they are working on now. She can't get moved anywhere while she has a NG tube. They don't really want to put a feeding tube back in her stomach while she still has a wound from the first tube. So...she needs to be able to eat. They did a swallow test on her last evening The speech therapist had to really coax her to get her to swallow, but she did it. The best news is that it went down the right way. They use blue applesauce and after swallowing in about 10 minutes they suction her to see if any went into her lungs and she passed and didn't have any for 24 hours. So now they are working on her swallowing, doing exercises with her.

I spoke up about she has not been out of her room yet like promised. John the Physical Therapist is going to work on that tomorrow and he will, he is good.

Today was a much better day. She was very awake and alert and smiley all day. Love to talk to her and see what kind of expressions I get. She really participates. She didn't want to get up tonight in her chair. She made that very clear by fighting her aide. I gave in and told them they didn't have to get her up. But when she started to push away the RT's hand because she didn't want to get suctioned, I did hold her hand down and make her mad. I reminded her she really has to have that done so she can breather and I got the eye roll. She was smiling the whole time I was putting her lotion on also. Must of felt good.

There is one thing she did that I am just amazed at. An aide was in and put a new bracelet on her. She picked up the papers the aide had laid on the bed. So I gave her a paper off the bulliten board and told her she could hold that. (she loves holding things) It was her swallowing exercises instructions and she held them up and I swear read them. I watched her eyes go back and forth. Then when she was done I told her there was more on the back. She laid the paper down, turned it over, picked it back up and seemed to read it and then gave it to me. They are always telling me how she won't follow commands, but they never seem to focus on what she does do. That bothers me.

Now, I need some help. She will be going to a nursing home when she leaves here. They are trying to get the insurqnce company to approve her coming to Decatur. I need honest answers about what snyone knows or has experienced at any of the nursing homes in Decatur and I want honest answers!!!! Oh there is one on the list for Sullivan rehab, not the Mason one. But Mason Point is on the list too. OK so maybe the surrounding areas too. The goal is to get her strong enough to attend a special stroke rehab program and there is a wonderful one in Springfield and then for her to be able to come home and live. Please, Please let me know!!!!!!!!!!!

Oh she got to hear Luca on the phone this evening and it was the biggest smile and twinkle in her eyes I have seen for quite awhile. It was good for her, another reason to get her closer to home.

Bunches of Love,
Angela

babiak3@yahoo.com
www.kindredhospitalsyc.com
www.payitgorwardhouse.org

That worked!!!

I see the picture worked. I wasn't finished yet though.

Yes, that is the lovely Prince and Princess at Medieval Times.

Everyone be sure to check out the lovely pic of the #1 follower......Miss Gail. Reminds me I need my hair cut. Also reminds me when I do my Mom's hair I always sing her Beauty School Dropout and she rolls her eyes at me. Maybe because I only know 2 lines of words. Ha!

Bunches of Love,
Angela

babiak3@yahoo.com

Good day? Bad Day? Not Sure

I know I am really far behind. Just been feeling really mentally stressed out and had a headache for many days so I have just been taking it easy.

I will try to make this easy and uncomplicated. I am very tired, but wanted to update.
They tried to plug her trach last Friday and it didn't go so well. So here is the story....they do not think at this time she will be able to be plugged. Has something to do with her stroke. Has a big name I will tell later. So from the respiratory side they can not do anything else for her.

Ok, so we start talking where to go from here.....

Find out today that she can't go on somewhere with the NG tube in her nose, but she does not have to be at a facility for her vent. Basically I have 3 options because now she has to be somewhere they will take a trach with aerosol. Dietary is supposed to come talk to me tomorrow and her speech therapist is going to start working with her tomorrow on swallowing. I thought we might be out of here this week and now I guess not.

Another worry for me is I was extended another week here at the house on Sunday. Now they have someone wanting a room and basically I am the one to have to go. I think I should still get my week and I know I don't want to go home and leave Mom here, but I might not have a choice. That is part of my stress right now.

I am going to try to post a pic and if it works, I will have one of Mom for you tomorrow.

Snow & Thunder

What a cold night it is here, is it at home? We have had about a foot of snow and it's very cold and windy. I am glad I really don't have to go anywhere and just have to walk across the parking lot. I know we get snow, but sheesh, they say this is typical up here. It's like it does not stop snowing.

Having a good couple of days. Still taking it slow and getting her used to breathing on her own. She wears her talker during the day and they take it off at night. Her numbers are still very good. Her BP tonight was 130/78. I threw that one in for someone who might be interested and they know who they are!

They said her kidney function tests are looking better, which is a good thing. Still giving her some fluids.

She participated this morning more than usual with her physical therapy.

Her cardio boyfriend was in this evening. He said he had only one concern. Her ejection fracture is about 45% and at some time it had been 50%. This is from when she had an echocardiogram many weeks ago and he is just telling me this. He said he thinks with the combo of meds she is on now, that in time it will help and maybe improve. He said he would be happy as long as it does not get worse. He thinks as she gets up and can be more physical that it will help too. Yes, she lit up when he came in and talked to her.

I had to do something this evening that I have so far not had to do. COMPLAIN!!
There was an issue with me asking me to do something and it didn't get done for 2 hours. Well, I marched my booty down to the nurse surpervisor and made my feelings known. Also talked about a few issues that I have not been real pleased with.

I also found out that they have been giving her some pain meds and as far as I know they have not done that til now. I don't think I like it, makes her sleep. I know she can't really tell anyone if she has pain, but I think I would be the one who could tell them by how she acts. She does hold her head sometimes which makes me think she might have a headache and sometimes she holds her tummy. I honestly don't think she has been in alot of pain, I would not let her be if I thought so. She told me once in this day and age of medicine, there is no reason for anyone to suffer with pain.

The wound nurse said her tummy is healing great!!! She said there could of been alot of complications with the site, but she was healing great. I am so thankful for all of the blessings we are receiving with her.

Want to know about Thunder?\

It would be a four legged sweetie that I call Thunder the Wonder dog.
Mary Lou who runs the house brings her dog with her to the house. Which I absolutely love because I miss my babies at home. Well. Mr. Thunder is a certified therapy dog and today he came to visit Mom! I think she really enjoyed seeing him. Could be because he doesn't jump like those crazy dogs at my house. Thunder put his chin up on her bed and licked her. She had big smiles while he was there. She reached out and petted him several times and even fed him some treats. I am so glad she enjoyed it. She got to visit with Mary Lou also. Here is the part that brought a tear to my eye. When Mary Lou and Thunder were getting ready to go, Mary Lou reached down and patted Mom's hand. Mom took her hand and kissed it and smiled at her. We decided that meant she enjoyed her visit and would like Thunder to come back and see her. Maybe it was a thank you also for Mary Lou telling her what a wonderful daughter she had and she could see where she got it from (Just ringing my bell *wink*. Actually I do think I am who I am because of my Mom and grandma and grandpa, they raised me right. I try to do them proud!

Last night she did not want me to leave. She held on to me and played with my hair and wanted me to lay my head on her chest and I did just what she wanted. What wonderful memories we are making together. I guess she got tired of me because later on she patted me on the arm and let me up.

I see more and more of her coming out. It is so good in a way, but them frustrating for me. I was trying to do something yesterday which was taking care of me and she swatted my hand away and got upset with me. She swatted my hand and didn't want anything on her lips. Later she let me put lip gloss on her. At least she is beginning to be able to communicate what she wants.

On the home from, Jeff took the dogs to the vet tonight. I knew he was taking Rox, but they all went and we knew they all had some issues. Well, $674.00 later......yes, you read that right here is what we have. I'll try to get it right, have to remember what he told me.....Brandy-more ear troubles, got the injections in her ears that do help and has 4 meds to take. Rox-bacteria and fungus on the skin, infected teeth and arthritis, he gets 5 meds and topical spray, got a shot and has to go back once a week for a month to get a shot and is going to get his teeth cleaned and finally Shaggy (my prescious) he has a bacteria and fungus issue with his skin also, a mass on his booty that was biopsied, bumps on skin that were biopised, arthritis, and sedated and xrayed and has a torn acl in his knee, he only has 2 meds to take, the topical skin spray and is getting the same shots as Rox. Sounds like we don't take care of them doesn't it. We try. Poor Jeff will be getting up a half hour earlier every morning to medicate the dogs before work.

Thanks for listening to my ramblings, it does help me to write and I have support group tonight and that makes me feel good. Tonight I made a rainbow with construction paper. It is what I think of when I think of hope......Sun after the Rain.

I am off to bed, the pain pill is kicking in and maybe I can sleep tonight.

Bunches of Love,
Angela

babiak3@yahoo.com
www.kindredhospitalsyc.com
www.payitforwardhouse.org

Oh yeah....Jeff is sending me my meds up in the mail and the cords and program I need to put pics on for you. I hope I can figure it out!!!

Ornery

I woke up to the sound of a snowplow. Ack. Just about a 1/2 inch. The sidewalks here at the house are always magically shoveled. I am told we are expecting up to 12 inches. I better go get some milk tomorrow and be ready so I don't have to drive. I was planning on going to Rockford to go to Hobby Lobby this week and get Mom a small Christmas tree. Time will tell when I can go, I do believe there is a Gordman's near. I could get in trouble.

There isn't a whole lot to tell. Still on the aerosol oxygen. They are putting her talked valve on because it is a bit harder work with that on and that will build her up for having her trach plugged. She has been ornery. She pulled her NG tube out of her nose twice in 24 hours. She had her mitt on this morning when I got in.

I guess the only change is some of her kidney function tests came back abnormal. So the kidncy doc is called in to look at her and he was in with his assistant. They have a couple theories, but I don't think they are too worried at this time. They were going to change on of her BP meds because that could effect the kidneys and she might be a bit dehydrated and were going to give her some extra fluid.

Her cardio boyfriend was in to check on her. I just wish you all could see how she lights up when he comes in the room. He told her how well she was doing and he wasn't going to promise her a rose garden, but he could tell her she was going to get better.

One of the aides told me today how much she loved taking care of Mom especially since her personality is coming out. She said she was halarious.

Today she held her gown for the nurse when she was repacking her stomach wound. And she put her pillows back on the bed for the aide when she was getting ready to put her back to bed.

She was more sleepy today than yesterday, but woke up for periods and watched TV and let me bug her. I didn't get a hug tonight, but she was sleeping. Getting up in the chair always make her very tired.

I got another week at the house. Right now I am on a week by week basis. I have used my 3 weeks and as long as nobody is on the waiting list, I get my room for another week. I have been told by a few that they will not make you leave. The woman who was here when I got here was here 6 1/2 weeks and I know there was a waiting list, because I was on it!

Someone dropped off cupcakes this morning. They were left over from a surprise birthday party. They were the kind that were really too pretty to eat. But I did manage to eat one. The community really seems to care about this house and takes care of the guests.

Mom is supposed to have a surprise visitor tomorrow. I will let you all know.

Bunches of Love,
Angela

babiak3@yahoo.com
www.kindredhospitalsyc.com
www.payitforwardhouse.org