Bugs!!! Bugs!!! Bugs!!!

Sorry for being away for so long. When I came back I brought a migraine with me and have not felt good since. I do feel better today, except for the snow.

Mom is doing so well, probably so many things that have gone on. I'm sure I won't get to them all.

I think the most important one for her is getting the tube out. She is like a different person. You can tell she feels better. They say having the feeding tube in her stomach will help so much now.

I have discovered one of her biggest problems (or should I say they have). She was full of nasty super bugs!!! That is what Dr. Mia, the infectious disease doc told me. She had infections in her bloodstream, urine, lungs, stomach and saliva. Some she said were not worrisome, they were just "clingers" I guess they changed her catheter also and stated fresh. She is on all new antibiotics and they seem to be working good. I asked about where all these bugs came from and was assured when you have an extended hospital stay, this can happen.

They are weaning her off the ventilator again. Today she was down to a 6 (breaths per minute the vent breathes for her) and seems to be doing good. Her blood gases have all been great. They feel she has been aspirating this whole time and that is the cause for all the lung and vent problems she has had with getting off. She has had some problems with "spitting up." She seems to be getting too much air in her tummy. So when the spitting up happens, they take air out of her stomach and turn her feeding off for at least a half hour and let her stomach settle. I believe they are looking into changing her feeding.

Her cardio boyfriend wants to do an echo cardiogram sometime in the next week to check her ejection fracture and see if it has improved. Here is a treat for you, I found his website and you can see his handsomeness for yourself. Although his cheeks look fat in some pics!!! http://elitecardiologysolutions.com/index.htm

The hematologist is pleased, her hemoglobin is staying up.

Karen is working on her with swallowing. She uses this thing that stimulates her cheeks and neck and then gives her wet swabs to use in her mouth. Mom takes them herself and puts them in her mouth and twirls them around and moves from side to side and gives them back to Karen to re wet. Karen feels her chin and makes sure she swallows and she does. I was very proud of her.

I guess one of the best things is also how many people have said since I came back how different Mom is. She is much more awake and alert and interactive than she was and now I know it's not just me seeing it!

Bunches of Love
Angela

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

Home Sweet Home (Away From Home)

I am back in Sycamore with Mom. Got here Friday evening around 6:30 and went right to the hospital.

I did have a good time at home. Seemed strange when I first got there, somewhere I wasn't used to being. The dogs didn't even greet me at the door. But they did come when I got in and Rox got up for the first time on his own since getting his tooth pulled and not being able to walk on his hind legs. Then they got excited when they saw me. I think Jeff might of too. I did stop at the theatre first to see Zach. Made him kiss me in public. I really didn't rest a whole lot, but got some things done and spent time with the boys. Went to the vet's with Jeff, Rox and Shaggy. Poor Shaggy has such a hard time walking, but no problem running to chase a squirrel. He has to wait at least 3 weeks before he can have surgery. Jeff took me to Olive Garden to eat, which was very nice and good. The first bread sticks were hard and I hide them on the seat and asked for more. Guess I could of told her they were hard, but I have to do it the comical way. They were out of Ranch dressing and Jeff asked the waitress why someone couldn't just run over to Target and get some which she didn't seem to find funny or take him seriously (he was serious.)

We went to Wal-Mart and Kroger and got groceries. I like for him to go once in awhile so he knows why I spend so much at the store! Went to Rural King and got Rox a dog bed which Brandy likes to sleep on. Unloaded groceries and I laid in bed and watched Ghost Hunters.

I went to CEFCU and took care of some of Mom's business at the bank and got it all straightened out on Thursday and got more groceries at Aldi's. Did a bunch of sorting and cleaning out while I was home, mostly of things I hauled home. Made the boys a nice dinner of Pepper Jack Chicken which tasted great. A home cooked meal!!!!! Zach got to come home from work londg enough for us to have Christmas and went back to work. I was a party pooper ion New Years Eve, didn't feel good and had a headache and went to bed. Jeff did come kiss me at midnight, our tradition.

Got up Friday and did more work and laundry, got the car packed, took Inky her Christmas presents and hit the road. There were some tears shed, but we will survive. I am sorry I did not have time to go see Luca. I miss him terribly.

I have to give Martha a big thank you for staying up here while I went home and was able not to worry "as much" as I might have. I called the hospital twice a day and got updates from Martha. I was able to start my time all over with at the house too!!! That is a big worry off my shoulders, I know I have a place to stay again for 3 weeks at least.

Ok, so about Mom.....She was sleeping when I got there, but I kissed her and told her I was back and she opened her eyes and smiled very big at me. The aide told her that they promised her I would come back! She smiled all evening and held my hand. I signed the papers for her procedure today.

I understand that she was quite a handful one evening. I believe it was Thursday evening. She pulled her NG tube out twice within a couple of hours and Martha said she just smiled at the nurses. She also managed to do this with her mitt on her hand. Julie our favorite nurse came in to tell me today she kept them busy. Julie told me she put her tube back 3 times within 4 hours and the last time it took 4 nurses to hold her and get it back in. She also reported she made sure Mom's hair got brushed.

I got to the hospital this morning at 10 because I didn't want to miss seeing her before they did anything. They didn't know what time the doctor was coming in. They were setting up when I got there, but it was about 11:30 before they began. I asked why she did not have her PIC line in and they nurse supervisor didn't know but was concerned. So she had the scope and her feeding tube put back in her tummy today and everything went very well, she did great. I am amazed what they can do in a room. She slept most of the afternoon and then was awake until I left at 8. She did seems to me like she was in a bit of pain and I did request a pain pill for her. I actually think she thought I was talking too much. I was talking, telling her whatever, and had stopped and she went back to watching TV. I started talking again and she turned and gave me that :moms evil eye" look and I told her I would be quiet.

Here is the most interesting part of the day. I saw Dave in the hallway. He is the PA for the pulmonologist. He says to me something about Mom being better because she sure was sick. I was like,,,what??? Apparently she has an infection in her urine (which I knew) and one in her blood. He said it was VRE (I think) and was telling me what a nasty bug it was and how good she was responding to the antibiotics and seemed to be feeling better. This is the reason they had to take out her PIC line. I told him I didn't know about most of this and he was surprised. He was at the video swallow test also. He said she swallowed perfect, which he was happy about because what they thought wasn't working was. He said it all went down perfect til it got down so far and then it just came up and went in the lungs. Apparently they were surprised and thought it was a one time thing and did it again and sure enough, happened again. He is interested to see what the doctor has to say about what he saw today. It may also help explain about her problems getting off the ventilator. He said even a tiny bit of tube feeding coming back up isn't good. He said it really was good for her to get the feeding tube put in her stomach. So we shall see what happens. She will stay on the vent settings she is on for a few more days and let her rest up from today. I feel very blessed.

I'm going to post some of our holiday pics and mom's room this morning all ready for "surgery."

Bunches of Love
Angela

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

Home Sweet Home

I am home and for the most part enjoying it. Seems strange typing on this computer. I have done a few things that make me feel normal again. Laundry, grocery shopping, taking the dog to the vet. I miss Mom terribly and worry all the time. I have Martha there for updates and I call and talk to the nurses. I will be going back tomorrow morning.

From what I know Mom is doing fine. She had her video swallow test yesterday and I talked to the speech therapist. She can swallow just fine, they don't see any problems with that. The problem is she has reflux and what she does swallow is not going down far enough and coming back up in her lungs. Once again, there is good and bad in this. Of course aspiration is not good. But this test has let them see what is going on, which is good. They think she might have a stricture that is causing the problem. So this is what they are going to do. Saturday she is going to have a feeding tube put back in, either her stomach or her intestine, it will depend on when they do a scope and look down her throat and what they find where the tube will go. And the scope will tell them what is going on with the reflux. They also think if this has been happening and her NG tube isn't just in place this could explain alot of the breathing problems and the trouble with getting off of the vent. Her surgery will be on Saturday and I will be back with her.

I wish everyone a Happy New Year!!!!!!!!

Bunches of Love,
Angela

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

Long Time Away

Forgive me for being gone. Just been busy or haven't felt like typing.

Lots of things going on, but I'm making it a short post.

Last week her hemoglobin dropped to 7.5 and she received 2 units of blood. She ran a low grade fever for days. Slept all day on Christmas. Friday and Saturday she had fast breathing and on Sunday she had fast breathing and very labored breathing. I knew that was not a good sign, suctioning did not help her. Her blood gas was normal at 5 in the evening on Sunday, at 4:30 Monday morning they called me and said she had to go back on full vent. I was so upset, she didn't even make it off the vent this time.

There is a good part to this though. She has some pneumonia in her right lung. Probably the reason for the troubles. They drew blood and took urine to do tests and cultures on. Infectious disease doctor is bacck on the case and has her on antibiotics. They did cancel her bone marrow biopsy for last night though.

I am going home sometime today. I've come to the point I really need to go home for a bit. I am officially giving up my room, so pray there is one when I get back on Thursday or Friday. This is the best thing for me to do, trust me and hopefully my time will start over again. I don't think she is going anywhere soon and this gives me more time to be with her.

Of course I will have the hospital on the phone a couple times a day!!

Bunches of Love
Angela

Better Day

Mom spent most of Monday sleeping. Her ordeal wore her out. Yesterday (Tuesday)was much better for her. She was awake when I got there and in good spirits. She was very smiley throughout the day.

I learned a few things about why they think she had problems again. There's still the concern about her having the tracheomalacia, but they think there is some sort of apnea going on, especially since the problems happen night. The bad news about that is she might always have to have a ventilator at night. They just really can't say with the stroke and not knowing what will repair itself. He gave me so many different possibilities it just makes your head spin. I got a talking to about my sleep apnea and heart problems too. Dave said he is now concerned for me too! Better than him not caring I suppose. One of the things he said is puzzling the pulmonary department is her secretions. They are concerned a bit about why she keeps having so many. The chance of her having a mucus plug the other night is a possibility. She does not run a fever, white cell count is normal, chest xrays are normal, so they know she does not have any pneumonia. He brought up maybe bronchitis.
I'm not medically trained, but seems to me they could figure that out. So we are looking at weaning her all over again. She will not leave this hospital fully weaned. I guess it's looking like Maple Ridge at Lincoln again. still have lots of faith and hope of what the future will hold. Her spirit is strong, her body is not cooperating.

I have spoke to the hematologist about doing the bone marrow biopsy. Her hemoglobin is still low. He says if it is done right, it is not "that" painful and with her on the ventilator, they will give her something. It will be done at bedside. Could be today, if not, next week.

Time to eat and off to the hospital to see what this day holds. My phone isn't working right just in case anyone needs to know that.

Oh yeah, it snowed about 6 inches, I am so happy----not!!

Bunches of Love
Angela


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

The Dreaded Stepback

I have bad news this morning. I received a call this morning around 5:30 from the hospital. They had to put Mom back on the ventilator and off I went to the hospital. From what I know right now she got into distrss again and was watched closely. She was sweating but was cold and clammy. Her respiratory therapist last night is the same one who was there when it happened before and said she recognized her struggling. I understand that the house doctor was in the room with her. They did some emergency labs and sent them to Kishwaukee Hospital. She had 2 blood gases by 7:00 this morning and they were back to normal. When she was suctioned they got tube feeding, so that might of been in her lungs. The tube feeding has been stopped and taken out of her room already. They had already done a chest xray. The doctor had called to check on her around 6:30. She looks absolutely exhausted even though they said how much better she looked. She did open her eyes and look at me once. It is nice everyone comes by to check on her and make sure I am ok or if I need anything. Her RT told me in her opinion she might continue to have problems as long as she has the NG tube in her nose, that they see that alot. She was off the ventilator for almost 3 weeks this time! And here we are again. So I guess I will see what happens today. Keep those prayers coming.

Bunches of Love,
Angela

Blue Lips?

Good Evening to the MaryLee fan club!!! Take one guess about what it is doing outside........if you guessed snowing you are correct and win nothing but the news of the day!

I feel it was a wonderful day indeed. Today Mom had another swallow test with the applesauce. She did GREAT!!!! When the speech therapist put the spoon to her mouth, she opened and took the applesauce, moved it around in her mouth and swallowed.
she swallowed even better with ice on the spoon with the sauce. (They say that is because it adds extra sensation) So today she had 6 bites of applesauce and beautiful blue lips when she was done. Good thing it's her favorite color. When she was suctioned there was no blur dye........even better!!! Tomorrow they are going to try to do the swallow test with the xray. Then they can watch and see it go down and make sure all is right. She has not tried any water yet and I understand that is harder. But what a good step forward. I told her she did an excellent job and I was so proud of her and happy. She gave me a wink and took a nap. Nothing more really exciting the rest of the day. Same routine, but I'll take that over a bad day.

I did something different tonight. Debbie, my housemate, has alot of her family here, including her 2 year old grandson, which makes me miss Luca even more. Their family was going to go out and eat at Applebee's and invited Mike (the other housemate) to go with them. We did and it was nice to go out and to play peek-a-boo across the table. I got enough to bring back and have for supper tomorrow.

Do we have bad weather at home? I understand it was horrible around Springfield. Debbie's parents were on their way home and had to stop and get a hotel around Springfield. Hope you all are ok.

Tonight's picture gallery will be....
Some pics of Mom the way she looked when I went in this morning,
her dog Faith dressed for the season,
Mom holding her right hand in her left,
and I tried some outside pics of the snow

Bunches of Love,
Angela

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