Let Go, Let God

One of my mother's sayings that has stuck with me - Let Go, Let God. Monday afternoon we did just that, we let go and let God.

Saturday afternoon Mom let us know that she "was ready." Late afternoon on Monday April 5th, mom was surrounded by eleven family members as the ventilator was turned off and she was provided oxygen through an oxygen shield. She received a morphine drip beginning at approximately 4:15pm. When she was deep asleep the ventilator was turned off - approximately 5:35pm.

She had short periods of alertness throughout Monday daytime, allowing for everyone to tell her their individual sweet good-byes.

It was a day filled with both heartbreaking moments and "take your breath away" moments. I anticipated that her passing would be quick, however I was very wrong.

Two of mom's sisters came from St Louis (Mary Louise and Rose Mary), and Dan and Shane came from Oklahoma.

At one point during the afternoon mom asked to sit up on the edge of her bed. This was a first! We were shocked that she wanted to do it, and we knew it would be incredibly hard on her, but we wanted to abide by her wishes. It was very painful for her, however I think it meant a lot to her to be able to look at everyone from a normal perspective one last time. She again demonstrated what incredible inner strength she has.

Throughout the evening we listened to classical music playing from Dad's computer. We got to hear share many stories about when we were growing up, and Dad told us stories about them dating, mom accepting his marriage proposal, their wedding, their honeymoon... many fun stories! Mom seemed to be hearing much of what we were talking about, and she would squeeze our hands (hand hugs) when something was funny, or meaningful to her. I would like to think that all of these stories gave her happy dreams.

Yes it was a super painful experience for all of us. By far the worst experience of my life. However, we are all relieved that mom will no longer have to suffer. She gradually began to breathe slower and slower. She exhaled her last breath at 9:35am Tuesday, 16 hours after being taken off the ventilator. I believe this was our very first family all nighter - and we are all way too old for staying up all night!

I am grateful to have had the opportunity to keep you all informed the past 3 months - and I am grateful that our family was all together helping mom to let go, and let God.

It is now time for us to celebrate Mom's life.

Tentative plans are for her visitation to be Friday night at Penwell-Gabel funeral home (Rosary 5:30, Visitation 6:00) and her funeral service to be Saturday morning at Prince of Peace Church (10:00am), 16000 W 143rd, Olathe, KS 66062.

Thank you for all of your prayers and well wishes throughout Mom's long ordeal!

Easter Sunday

Mom had lots of visitors today! The day started out early with visits from John, Bob, and Donna (and of course Dad was there! :) The staff had turned off all feeding this morning, and her blood sugar had come down to 97 (which is good). I think the blood sugar may have come down because they turned the feeding off. The feeding is now turned back on and her blood sugar is under control.

Her white blood cell count is very high, so they were going to hang a couple different types of antibiotic for her. The nurses hear something strange in her lungs, so they requested a chest x-ray early this morning.

She was very tired this morning, only opening her eyes a couple of times while us kids were there this morning. Her "roommate" moved out this morning so she has a private room again - yeah!

Later this afternoon she was complaining about a lot of pain, so dad requested a Darvocet for her. She was able to get some much needed rest then.

This evening we went back up to visit mom and had quite a crew with us. Don and I, and Brenda and Brooklyn - John and Cyndi, Paige, Brandon, Jessica - and my brother Bob. We were happily surprised that we were able to wake mom up pretty easily and she stayed awake and alert for probably close to 1 1/2 hours. The kids had some great conversations with her, and received lots of "hand hugs" - she was really squeezing everyone's hands a lot tonight, it was very sweet. The kids also wrote notes and pictures on her wipe-off board and made up a rap song for her - I believe she even laughed! I think that Darvocet gave her such a nice restful sleep, that it allowed her to be so wide awake and in good spirits with the kids.

As we were leaving tonight we got to hear a little voice - we don't hear that very often - so it is pretty exciting when she talks with enough force to be able to hear her voice.

I hope you all had a wonderful Easter!

Saturday

Don and I went to visit mom late this afternoon. Dad had been with her all day, as always. The doctors finally got her on the TPN feeding through the IV, but unfortunately it was not all good news. The kidney doctor ordered the mixture, and apparently did not consult with the internist (who deals with mom's diabetic condition). The TPN formula was 70% dextrose... sugar. Not the best idea for a diabetic. The result was terribly high blood sugar that they were dealing with all day. They were checking her blood sugar hourly, and giving her insulin hourly, and by the time we had left they had not made much of a dent in bringing her blood sugar down. The next bag of TPN will have a totally different formula, much less sugar, much more protein. Hopefully tomorrow her blood sugar will be in better control.

They tried her on CPAP earlier today, which surprised us since they said they would leave her on full support all weekend. However, they ended up putting her back on full support - I believe because her blood gases report was not favorable after being on CPAP.

Today was another very rough day. She got a fever late this afternoon so she received tylenol, we had a cold wet washcloth on her forehead for hours and fanned her much of the time. Mom is in a lot of pain and very restless. Dad requested a Darvocet for her this evening which helped her to relax and get some rest. When the nurse gave her the medication she asked her to rate her pain level on a scale of 1 to 10, and she said 9. Her pain is all over, no specific location.

Stormy Good Friday

It always seems to rain on Good Friday, we have always talked about that. We had a thunderstorm move through, along with a tornado watch. They had us pull down the blinds in her room. A little bit of hail, and leaking water through a window that was not locked down... then the power flickered. Then a breaker was blown in the room - so her bed deflated and inflated a few times - and the auxilary power kept the ventilator going. It is amazing how quickly the staff enters the room. There were probably 4 people in the room within 15 seconds of the power going down. They did not have to use the bag to keep the oxygen going though, the auxilary power kept it going. Dorothea had a little bit of an amusement ride with her mattress deflating and inflating.

She did not seem to feel very good today, but she was more alert than she was yesterday. She complained of being hot a few times, but had no fever, so I fanned her and put a cold washcloth on her forehead. Dad removed her fuzzy boots.

The Physical Therapist came in and had mom sit up at the edge of the bed with support. She was able to keep her up for about 5 minutes. Mom did not want to do this, but she seemed to tolerate it ok. I combed her hair, which helps to make the time go by faster I think. Her heart rate stayed stable throughout. She said she hurt all over when she was sitting up, I imagine that she was feeling pain from stiffness.

When Harold arrived this morning they had shut off her peg tube feeding because she was retaining some of it in her stomach. However, soon after we arrived they started it back up at 40ml/hr. They have also added an IV feeding of glucose, amino acids, and electrolytes.

Her chest tube continues to drain, so that will remain for now. She still puts out a very small amount in the foley catheter. She will remain on full ventilator throughout the weekend so that there is no extra stress on her heart.

She is having dialysis right now, so that will probably make her a bit tired, and she can get some rest this afternoon.

Bob and John came to visit last night, she was happy to have seen them. Two of her sisters, Mary Lou and Rose Mary, will be coming to visit her on Monday. She has a roommate again, the same person as before. It sure makes her room crowded - especially when dialysis is going on.

Please continue to pray for Dorothea and Harold each day, this is a really tough situation for both of them. It is very hard to see her in pain and not be able to fix it or make it go away. It is hard to hear her say "take me home" and know that we can't do that.

Thursday

When I came in to the hospital this morning I was surprised to see that they had not started her on the TPN (Harold was surprised as well). They had also bumped up her peg tube feeding to 60ml per hour...which yesterday they said was too much...but today it seems fine. She seems to be tolerating the higher rate. We still do not have an answer as to whether they are going to start the other feeding or not. Sometimes one doctor writes an order, but another doctor within another specialty can deny it if it affects something they are working with. I am guessing that is what has happened here.

She was on CPAP when we arrived around 8am. She had good numbers for volume and breathing rate, along with oxygen saturation and heart rate - all looked good. She was sleeping soundly, so we let her sleep. Around 8:45 Harold arrived, and shortly thereafter we were visited by a couple of nurses, the respiratory tech, and the lung doctor. Apparently Dorothea had an unusual heart rhythm shortly before we arrived. The lung doctor was concerned, and chose to put her back on full ventilator for now, so that her heart will not have any extra work. She has had occasional fast heart rates for a few days. They put her on Digoxin on Monday I believe. That is a medication that she took daily before the bypass surgery. It should keep her heart rate at a good level.

PT and OT and the Voice Therapist all came in today and worked with Dorothea. The Voice Therapist is working on swallowing exercises, and trying to strengthen her tongue muscle. She has been a little tough to wake up today, but Harold's deep voice and encouragement got her awake enough to participate with the therapists.

The plan is to keep her on full ventilator through the weekend, which will rest her lungs and her heart.

It is still Wednesday somewhere...

You know the song it is 5:00 somewhere... well I am very late with my Wednesday posting... but I am sure it is still Wednesday somewhere in this world!:) My apologies to Dorothea's faithful daily followers.

Wednesday was a gorgeous day...high of 79, blue skies, a gentle wind. I so wish that I could capture some in a bottle and let it loose in her room - that would surely make her feel a little bit better. Seeing the blue sky through a window, and hearing us talk about how nice it feels outside is just not the same as feeling it yourself.

Dorothea was a bit blue herself yesterday. On most days I find myself chatting away and telling her all about everything, family, friends, news, funny stories... just chatting to entertain her basically. Yesterday was different. She was very tired - in and out of sleep every few minutes while I was there. And when she was awake she did not appear to want the silly chit chat that I bring. She turned away the Occupation Therapist yesterday...she just wanted her to raise her hands, but she refused. She lacks the energy at this point. She can do it, and sometimes does do it spontaneously on her own, but she did not want to do it at that time.

She seems uncomfortable, tries to stretch her legs and back a little bit and get in a different position. The staff changes her position quite often really, but 24 hours a day is just way too much for the body to be in bed. Her sores and her stiffness make her quite uncomfortable, along with going back in forth being hot and then cold.

The doctors attempted to raise her level of feeding - and that was unsuccessful - she was retaining it in her stomach, it was not able to move through her system. However, they acknowledge that she is not getting enough nutrition, so they have now decided to go ahead with the TPN IV feeding along with the peg tube feeding through her stomach. This will create more fluid to be removed through dialysis, but this way she will get a lot more nutrition hopefully.

She was on CPAP on the vent again yesterday, and seemed to be doing well with it. Hopefully she was on it most of the day. I left around 2pm yesterday, so I do not have anything to report after that.

Apparently she had thrown up two times over night Tuesday night, so that may have affected her energy level on Wednesday. She threw up once when they were cleaning the inside of her mouth, and once when they were cleaning her trach - so Harold thinks that both instances may have been caused by her gag reflex.

Don and I are heading up to the hospital now - I promise to blog again later today!

Tuesday - Ultrace day

Some of you may remember that Harold wanted the doctors to give Dorothea Ultrace long ago... way back when she was at Olathe Medical Center. Her body does not produce some enzymes that are necessary for proper nutrition and digestion, and Ultrace takes the place of those missing enzymes. She has been taking Ultrace for years, and Harold has always insited that they needed to figure out a way to get some for her. It comes in a capsule, and they felt that the small "pieces" within the capsule were too large to go through the peg tube. He finally convinced the doctors to give it a try! Woo Hoo! She will be given 2 capsules worth of Ultrace every 4 hours. They have also started her on a protein supplement called Prostat, and they have increased her feeding to 40ml per hour. They decided that they did not want to give her the TPN IV feeding along with the tube feeding because they feel that it is too much fluid. All of these changes happened this morning, and so far she is tolerating everything. The Ultrace should help her to hang on to more nutrients, and should firm up her stools. Let's hope! She really needs her nutrition level to improve in order to have the energy she so badly needs.

She was on CPAP again this morning - starting at 5am. They took her off of it around noon today I think - and put her back on full support. She was not able to keep her numbers where they need to be. She was taking in small volumes and breathing too quickly. That seems to go hand-in-hand with her heart rate going up (because she is working too hard).

When I came in today I asked her how she was doing and she said "pretty good" - as she says most of the time. Today I told her that she didn't look like she was feeling pretty good, she looked pooped out. So then she said, "I feel awful". And I said - but you said you felt pretty good, which is it? She then said - I feel awful. I lie. We both got a chuckle. I was teasing her and telling her that she cannot lie to us... and then in walks the priest! LOL The timing was quite funny to both of us - he came in and prayed with her and forgave her of her sins... including lying! :) In all seriousness though, I think she just does not want to worry us, but I would rather she be truthful. We can only try to help her if we know how she is really feeling. She is still feeling pretty blue, and they are continuing to give her some happy medicine. Hopefully that will help.

Monday

I went in early this morning,which allowed Harold the opportunity to go up to Prince of Peace and count money with his counting group. It has been awhile since he has been able to do that. I imagine it was nice for him, and nice for the group to get to talk with him and send their good wishes for Dorothea.

She was very sad when I arrived this morning. We cried together for awhile, and then we both got ourselves together. Does no good to cry - but you know you just have to do it sometimes. She was on dialysis early today - started at 6:30. They took off 2 Liters of fluid.

Dorothea has been receiving 30ml of feeding per hour. Harold read the nutritional information for Dorothea's peg tube feeding today and calculated that they have only been giving her 720 calories a day. Obviously she does not need as much as you or I since she is laying in bed, but he figures that she needs to have at least twice what they have been giving her. However, her stomach at this point can't handle it, so she needs to get calories another way. Her nutrition is really lacking we feel. Harold talked to many, many doctors and nurses and the dietician... he believes that tonight they will start her on the TPN - that is the feeding that goes through the IV. So, she should be receiving both feedings now - IV and peg tube. They are also talking about the possiblity of adding powder supplements to the feedings. All of this has to be discussed by multiple doctors to make sure that everyone agrees. They have their team meetings on Tuesday, so all of this should be discussed on Tuesday.

She had multiple low blood sugars today...with the change in feeding, there may be more issues with blood sugar tomorrow, we shall see.

They put her on CPAP (pressure support) mode on the vent today. She had been on it for at least 4 hours before Harold left. She was keeping her numbers in a normal range. I am pretty sure they will limit it and put her back on full vent over night. But it is good that they are continuing to try to wean her from the vent.

John came up and spent a few hours with Dorothea, I am sure she really enjoyed that. He was out of town this weekend, so it was a good chance to catch up.

Sunday

I took Brandon, Jessica, and Brooklyn up to the hospital with me this afternoon. I was hoping that she would have been feeling better than she was. Saturday and Sunday were rough days.

Dorothea's heart rate was spiking again on Saturday. The heart doctor wanted to start her on a beta blocker, but Harold informed him of what happened when they put her on a beta blocker at the other hospital. The doctor then decided to hold off a little bit She apparently had 16 "spikes" in a row, and his order was that if she had 30 in a row, then he wanted her on the beta blocker immediately. Since that time, she has kept a good heart rate and it has not been an issue.

Her left chest drainage tube was removed on Saturday. The right side normally drains quite a bit, but the drainage had virtually stopped. They did an x-ray and found that there was fluid present, but it was not draining. They flushed the line with heparin and flushed a blood clot out (this would have been in her plural sac surrounding her lung). Since the clot came out the drainage is going again and the heart has calmed down, Harold thinks the two are related.

She was experiencing "all over" pain last night for quite some time so they gave her multiple doses of pain medication. This morning she was a bit depressed... "leaking" as Harold says it... so they gave her an anti-depressant to calm her.

When we arrived this afternoon she woke up and was alert and listening to all of the conversations, but she definitely appeared to be in pain at times. When I asked her where she was hurting, she responded "all over". She enjoyed getting to see the kids and hear their stories.

Harold requested that her peg tube feeding be switched back to her original kind. He felt (and I agree) that she is looking more malnourished. The ingredients of the "new" feeding was #1 corn syrup, #2 and #3 Oils... not exactly nourishment. Other ingredients are things that she needs her enzyme medicine in order to break them down, and she cannot take her enzyme medicine because it ONLY comes in pill form. He spoke with multiple doctors regarding this issue, and they agreed to switch back to the original feeding.

She is on full vent now... I didn't ask but I am assuming she probably has been for most of the weekend. That's a bummer. She was doing so well on the pressure support (CPAP), so we were really hoping that they might be able to try the T-tube on Monday. I am definitely in no way a medical expert, but I do not think that is going to happen now. If I got any of this wrong Dad please add a comment to this post and correct me! :)

This weekend was very hard for Dorothea and Harold both. Please continue to pray for both of them daily.

Sorry I did not post anything

Sorry I did not post anything today... I was wrapped up in activities with my kids and John's kids today, so I did not make it up to the hospital to visit mom. I will go after church tomorrow and update the blog. :)

Friday update - power outage

Just got a quick update from Harold. The power went out today while Dorothea was receiving dialysis. So, that means the dialysis machine shut down, the ventilator shut down, and her mattress collapsed (it is an air mattress that is supported by electricity I guess...?)

They have auxilary power, so it took about one minute to get all of the plugs moved over - so they had to "bag her" since the ventilator shut down, but just until they got it plugged into the auxilary power. The power was off for about 30 minutes.

Sometime this afternoon her heartrate jumped up to 130 something... so they have put her on a new medication and want to keep her heartrate under 100. This medicine caused the blood pressure to drop though, which we cannot have, so they are keeping an eye on things and making adjustments when necessary.

Never a dull moment that's for sure!

Friday fun

Okay Dorothea might not have thought it was fun... but it was good for her and the Physical Therapists were impressed! :) Dialysis was scheduled for the second shift (around 11 am), so that PT could come in and work with her before dialysis tires her out. They let her know that they wanted to have her sit on the edge of the bed today for a few minutes...Dorothea shook her head multiple times to tell us that she did not like that idea. However, she needs to push herself a little bit, so they went ahead and told her that is what they were going to do, and she did not resist.

They sat her up on the edge of the bed for 5 minutes. She leaned her left arm against the railing of the bed for a little support. It was great to see her support herself. The therapists were not holding her up - she was using her own core muscles to hold herself up. When she would start to go backwards, she used her own muscles to bring her back to an upright position. She acknowledged that this was very hard. I imagine she will be very tired from this, but I think it is good for her both physically and mentally/emotionally to sit up like that. PT will not be back until Monday so she has plenty of time to rest. They recommended that we have the nurses put her bed in the chair position on Saturday and Sunday, which we agree is a great idea.

Her tube feeding has now been increased to 35, and they have discontinued her TPN IV feeding. So far, it all seems to be going through her system just fine. They have her on a different type of tube feeding now - something that they say is better for her kidneys.

A voice/speech therapist came in to see her yesterday, however Harold was not impressed with her and asked that they send someone else next time. As he talked with her he realized that she was not very knowledgeable about what is going on with Dorothea...She did not know what the cuff was on the trach, and she did not know what the T-bar was either... we would like her to have someone who is familiar with working with trach patients... seems to make sense to us.

Her right chest tube contains to drain a lot of fluid - 600ml in the overnight shift. However, the left is still barely draining... they keep saying that will come out soon.

Thank you as always for your prayers and for taking the time to keep up on Dorothea's progress.

Sitting up!

Dorothea seemed pretty tired when she woke up this morning... but shortly afterwards her nurse decided he wanted to change her bed into the sitting position. Well that woke her up! It has been awhile since we have seen her sitting up... I asked her how it felt and she smiled and said "funny!" I thought it was great though. I was there for probably another hour after that, and she was doing well sitting up. We were encouraging her to use her arms - she was putting a wet wash cloth on her forehead, and wiping her mouth. Small things, but they equal good exercise for her arms.

We discussed her tiredness with the respiratory tech. She says that she is not tired because of breathing (as I had thought). She believes (and we concur) that she is tired from lack of exercise. So... we let her know that we were going to be encouraging her much more to move her arms and legs. She understands what we talked about, and seemed to agree... not hopefully we can get her to do it. As I mentioned earlier, she was moving her arms much more than normal while she was sitting upright. Also, she was pulling her head off the pillow, which was great for her neck. She acknowledged that it hurts her to do that, but I think that is stiffness, not really pain. She let me comb her hair and we joked about putting pig tails in her hair. Her hair is longer than I have seen it in years...maybe ever...? I let her know that if she decides she wants her hair cut while she is still there, I will ask Don's mom (Nancy) to come up and cut her hair... so get ready Nancy!

So far she seems to be handling the peg tube feeding just fine. They are discussing removing the left chest tube today, hopefully that will happen.

I went in early today so that my Dad could sleep in a little bit...didn't work though, he came in 30 minutes later than normal.

Learn a new term

Okay, I am going to guess that no one has heard this one before... Ileus. Paralytic Ileus is the explanation being given for Dorothea's gassy stomach. Basically part of her intestine was obstructed(collapsed), so food could not pass through her system, and was causing all this gassiness. Yes that is a new word, although I don't think you will find that one in the dictionary. Today they determined that the obstruction is no longer there, so they have started her on the peg tube feeding, but at a much slower rate. They had it set at 50 (I think that might be ml per hour) and now they are giving her only 20. Because they are not ready to give her a normal amount, they are continuing to feed her with the TPN feeding through an IV. Her IV stand was quite full today... She had a slight fever yesterday (100) and they have not been able to grow anything in their cultures, so they are not sure what was causing the fever. So... they started her on all sorts of antibiotics...5 different ones - that is why her IV stand was full! Apparently one of the medicines did the trick, she was at 98 degrees late this afternoon.

She was put on CPAP mode no the vent at 6 am, still on it when I left at 5pm. Wow - that is great improvement! She is keeping good numbers, and not complaining about feeling like she can't breathe. Harold says that they are shooting for Monday probably for switching her to the T-tube. That is a tube that will allow her to breathe regular air.

The respiratory tech told us today that she really wants to get the Speech Therapist in working with her on her swallowing. She does not swallow good enough to get stuff out of her mouth, which causes her to gag... you get the picture, not a good thing. The resp gal (Melinda) is very nice, and is very encouraging, praises her a lot and takes very good care of respiratory and oral care. She had her teeth brushed today and a royal lip treatment! So many things that we take for granted, are a really big deal when you are in a situation like Dorothea is.

She had dialysis this morning, removing 1.8L. Her left chest tube may come out soon, she is not draining much from that side. Her right chest tube is still draining quite a bit though, 300ml during the day shift. She is still producing small amounts of urine...we are hoping that will continue to improve.

PT and OT came in today, but she did not want to participate. I talked with her about that briefly... because she really cannot continue to refuse the 'workouts'. She knows that, but she wants to wait until she is breathing easier. I think it takes a lot of energy out of her to simply breathe. Add exercise onto that and it makes it much harder to breathe.

John came up while I was there today... with a broken hand! She got to hear his story of him being bucked off of his horse. I brought up pictures from our trip last week, and she got to see them on the computer, nice and big. Harold brought in more "movie star" roses, and I brought in an Easter Lily. She has quite the beautiful collection of foliage.

Wishing you all a wonderful evening!

Tired on Tuesday

Dorothea has been very tired today. It took a little bit of convincing to wake her up when I came this afternoon, but once she woke up she stayed awake the whole time I was there. The respiratory team put her on CPAP around 11:30 this morning, and she was still on it when I left around 5 tonight. The resp tech came in while I was there and was telling her that she was very pleased with how she was doing today and feels that she is making progress. I am sure they will put her back on full vent for the night shift and then go back to CPAP tomorrow when she is awake a lot. No dialysis today, she will have it tomorrow.

She has a slight fever, so they started her on an antibiotic. They went ahead and replaced her foley catheter, just in case that might be causing an infection. She contains to drain fluid through the chest tubes.

She had a little coughing today, but not bad. Her secretions have been minimal which is great. Her blood sugar is still a little high, but manageable.

Harold continues to take wonderful care of her and keeps her "tidy"... lots of little things to keep her comfortable.

I hear that Rosie and Mary Lou might be coming for a visit this weekend... she will be glad to see you both! :)

Crazy Monday

Okay, Dorothea's day wasn't crazy, mine was. Sorry this posting is so late!

While the doctors try to figure out what is causing the gas in her stomach, they went ahead and started her on the TPN feeding through IV. This will give her some much needed nutrition. The first bag or two of the TPN did not include insulin with it, so her blood sugar was high for awhile, but by this evening it was much better (147) - from now on their will be insulin in the TPN feeding, so this shouldn't be an issue.

Dorothea had dialysis this morning, removing 1.6 L of fluid. Her chest tubes are continuing to drain fluid from her lungs - for the 12 hour shift today they drained a little over 200ml (2 lung total). She is still producing some urine, not a lot, but we still feel enouraged that she is producing, so hopefully the kidneys will slowly get back to normal.

PT and OT came in today. They are limited as to what they can do right now because there is a lot connected to her right now, but they did range of motion exercises for her arms, shoulders, hands, legs, ankles, feet, etc. It was plenty for her for today.

Bob and Jessica came to visit today... on Bob's birthday. Bringing flowers and balloon and brightening her day!

She was on CPAP again today, for about 6 hours I believe. They will try to increase that each day probably. They need to balance all factors - keeping her comfortable and keeping her blood gasses and oxygen saturation at good levels. This shows good progress, and the respiratory techs are consistently working towards weaning her from the vent.

While I was there tonight she had a bit of trouble coughing. After the nurses were in moving in she began to cough more and looked panicky-she motioned to Harold and he knew what she needed. He raised her up in bed and gave her the pan... but luckily she did not end up needing it. I haven't been present when any of this has happened before. I don't like to see her like that. However, the respiratory tech came in and suctioned her out, and removed a lot of gunk from both her mouth and her lungs, and after that she seemed to be very comfortable. While she was there she went ahead and cleaned up the trach and stoma area and said that she is healing very well. She is using a medicated mesh bandage around the stoma area which is helping it heal much better. It was fun to watch as Harold assisted the nurse in her procedures... he is a great asset to the team! He knows what they do, what they need, and where all the supplies are...it is fun to watch...

John came in before I left so I was able to catch up with him and Dorothea got to hear lots of stories... she probably wanted to sleep... but I am sure she enjoyed hearing stories too.

Smiling on Sunday

I'm back! It was very hard to be away for so long and to not have daily updates!

When Harold walked in to Dorothea's room this morning she was smiling! Woo Hoo! Nice to start off the day good! :) Don and I came up to the hospital this afternoon and also found her to be smiling and in a good mood. We were both so glad to see her and thankful that this was a good day for her. We had a nice time telling her about our trip and the kids.

When we first arrived the pulmonary doctor was in and he changed the vent to the CPAP setting - that means that the machine is providing her with oxygen, but she is regulating her own rate and volume of breathing. They would be rechecking her in a few hours and making sure that she was able to keep her O2 saturation levels up, if so, then they will leave her on CPAP. Next step will be to get her on to the T-bar tube with no oxygen assistance.

As Harold mentioned yesterday, they stopped the peg tube feeding, so she is only receiving IV glucose feeding. There is a suction machine that is hooked up to her peg tube, removing gasses, mucus, whatever else settles in her stomach. For now, they are consulting and trying to decide where to go from here. In my mind, they have got to figure out what is causing her to produce this gas. We all know how painful it is to have a gassy stomach - this is the last thing she needs to be dealing with now. She can only be on the Glucose feeding for a maximum of 72 hours - and we really don't want to see her on it for that long even. She needs nutrition badly. Since I did not see her for 9 days, I can definitely tell that she has lost more mass in her upper chest area. She also seemed shaky today. I am not sure if that is because she is feeling weak from lack of food, or if there is another reason. Hopefully they will have a new solution tomorrow.

Her bladder continues to produce small amounts of urine - yeah! Hopefully those numbers will continue to increase and she can get off of dialysis. She also continues to drain fluid off of her lungs with the help of the chest drainage tubes.

She coughs pretty often, and it takes a lot out of her. Her coughs are silent since she is on the vent, but you can tell that they take so much energy out of her, and cause her pain.

Harold continues to do a great job taking care of her! He is with her every day, all day, making sure that she gets the care that she needs, and he providing much of the daily care; keeping her mouth moistened, putting lotion on her, making sure that she gets suctioned when needed, et.. Being her advocate to receive the correct medications and procedures... it is endless. It is all so important, and we are so thankful. Thank you DAD!!!!

Stagnate Saturday

When I came in she was gaging with the tube feeding coming out her mouth and three people working on her. After getting her calmed down and cleaned up they called for new x-rays of her belly and gave her some Darvoset which calmed her down and allowed her to get some rest.

The x-ray showed that her belly is full of gas pockets and when they open the peg tube they get gas out. After a calm day she started the same thing about 4pm and as of 6pm the tube feeding is turned off and they are setting up a vacuum line to relieve the gas pressure on her stomach and the GI DR. are to call in the AM to find a different way to provide proper nutrition.

John and Brandon came by this afternoon and Donna called stranded with flight delays and will not be in till late.

The snow and ice have made I-435 a bob sled run. Four accidents on the way up this am and four on the way home.

Donna will be on for tomorrow.

Funner Friday

This morning Dorothea was calm, relatively pain free, cleaned up and sleeping.

There was more fluid in the foley and her labs show that he kidneys are recovering. She had dialysis this morning with a net gain of 900ml. They will put her on second shift for Monday and check her labs to see if it is needed or skip.

Dan came up and stayed with her for a while and she was much more fun that yesterday. She still did not want to do PT_OT but I keep telling her that this is the only way out of here.

Dr Sisllo came by as said her the x-rays show all the fluid is off her lungs, and she sounds much more clear. They will start to wean her off the vent. She still has the chest drains but they have slowed down.

Not a plus day

Dorothea still says she can't breathe even though her volumes are up and SO2 is 100%. She is still complaining of general belly pain and that causes her to cry which causes her nose to run but being on the vent she can't blow her nose so the drainage runs down her throat and collects on the top of the cuff which triggers her gag reflex. She tries to spit up but nothing comes up which causes panic and more crying. We have been trying several pain killers today and finally came up with one which allows her some peace and rest. Chest tubes still draining and about 100ml of urine in the foley. Hope for a better day tomorrow.

Back on the Foley

Last week's flowers were roses, "Movie Star", and they are still doing well so I added some white Pom-Pom Mums.

They said that last night they scanned her bladder and found about 400ml of urine which they got off with a cath. this morning the scan showed more so she is back to a Foley. This should help her belly pain. This belly pain is causing her to cry and when she cries her nose runs, the result runs down the back of her throat and bubbles out the stoma and hits her gag reflex which makes her nauseas causing more pain and more tears.

We have her calmed down with pain meds and waiting for dr to restart tube feeding.

At the start of dialysis her blood pressure was 77/47. By adding Albumin and fluids they were able to complete 3hrs of dialysis with her blood pressure at 119/51 but with a net gain of 1000ml of fluid. I think she needed it anyway.

4pm and pain meds in and tube feeding started, I am playing CDs on the laptop for her.

Rush hour seems lighter now that it is spring break. I got here at 8am and found Jesse, her nurse, Felix her CNA and Carol, the Wound care nurse getting her cleaned up and ready to face the day. Jesse said they started on her at 7:15 knowing I would be in. When she saw me the first thing she said was " Where have you been!!" I assured her that I was there as soon as I could be. Then she said "Why am I here?" and I answered so you can get better. She said "No I'm not." Then "Take me home."

They had turned off her food as she was to go to CT to get the drain tubes put in, but CT called and said they were backed up with ER work and it would be later. She has been complying for the last two days that her belly hurts. She asked for a laxative but she had 5 stool last shift and one this AM. Jesse opened her tube and let off some gas. Her belly seems distended but no one knows why. The main thing right now is to get the Elephant off her chest.

By 11am her blood sugar was down to 57 so they pushed some sugar. CT came up about 12:30 and we went downstairs to the CT Lab. We were back up to the room by 2pm and in a new room, 406, no roommate.

So far they took off 60ml from each side in the CT Lab and the drains have over 1200ml from each side so far. She is still complying she can't breathe but this should ease as her lungs expand. They gave her a shot for the pain and now she is sleeping.

She is still complaining about pain in her gut but has had no input since 6am when she had a large bm.

John coming up later.

The Night crew said that Dorothea calmed down about 1AM. My lung plug came loose about 10pm.

This morning Dorothea was on Dialysis when I came in but due to low blood pressure they were only able to remove about 300ml of fluid. After dialysis the dreaded PT-OT crew came in but were only able to sit her up for about 5 min on the edge of the bed.

Chris called and came in before lunch. Dorothea was awake and asked about Florida and the kids.

I took Chris to lunch and let her sleep. After lunch she was still asleep so I hope I get a good report.

The Dr came in and said he will send her down to get chest drains tomorrow.

She woke about 2pm and was complaining about hurting, her back and butt. Jesse gave her some pain meds and she was still sleeping at 5:30 when I left to get some wash done.

John called and said he would go up tomorrow evening.

Today's mail contained the first Olathe Medical Center statement for 1/13/2010-2/26/2010 for $445,548.03

This morning passed with sleeping, turning, suctioning, and more of the same.

This afternoon the Dr came in and said the x-ray they took yesterday shows that the fluid he took off of the right lung was back so he will not be doing the left. He is considering chest tubes to drain it if she continues to have trouble breathing. She has been off the vent since 5am Friday and her SPO2 numbers are holding in the 95-100 range. We will try swallowing on Monday with a new Voice Path as Jenifer had her baby this last week.

At 2pm Dorothea started to complain that she could not breathe. Her numbers all look good and we can see that she is breathing. The nurse gave her something to calm her fears but she continued to complain that she could not breathe. At 3pm she went back on the vent at 100% O2. Still same complaint till 4:10 when she started to calm down. They will install the drains tomorrow.

6:30pm and she is still crying she can't breathe and they have given her everything they can. I have to go home as I am sneezing and wheezing and my head is hurting and I got very little sleep last night. I told her I would be back as soon as I can. I think she understands but she is still hurting.

WE ARE NOT AMUSED!

I arrived a little after 7:30 and found Dorothea with Brown Crusty Lips. As I was cleaning her lips I noticed that she had a hardened crusty leakage from her stoma dressing. Her right arm was up on a pillow with a dressing that indicated they had taken a draw for blood gasses but the elbow was over extended and the fingers were cold. As I was finishing her lips, Victoria (THE best RT), came in a cleaned up her stoma dressing. Victoria tried to suction her thru the trach tube but the suction tube would not clear the botton of the tube. She then got a finer tube and was able to get some very thick mucus from Dorothea's lungs. Victoria put in a call to the Dr. to replace the trach tube entire. Her Day CNA, Emily, came in to check the SO2 sensor on her finger as they had a low reading. THe reason it was low is that they had kept the sensor on her finger for two days with tape. After removing the tape we could see why it was so low. It was so tight it had cut off the blood flow. After moving to another finger it was fine. Her Day nurse, Steve, came in to add some food to the bag and I asked him to change the connector to her PEG tube as it was loking crusty. Victoria asked him to get the Charge nurse. I explained to the charge nurse that it look like Dorothea got either very little or very poor care overnight. She agreed and said Dorothea would have a different crew tonight and she will write it up and talk to the nite crew. The Dr. called back with the ok to replace the trac tube and she did a very good job of it by first suctioning the crud off the top of the cuff and then replacing it very quickly. She saved the old one for show and tell to the DR. and night crew. Victoria then cleaned Dorothea's mouth and redid the stoma dressing, Steve replaced her wrist dressing and at 8:30 I got a new cup of coffee.

By 10:30 Dorothea was turned twice, bathed, and shamooed. At 10:45 Donna called for an update.

After lunch Dorothea said she can't breathe but she is clear and holding good SO2 levels. Steve was able to give her something to calm her down and she fell asleep. Later the Dr. came in and said he will take the fluid off her Left lung on Monday.

Dorothea got a new roommate this afternoon.

6pm and heading for the house.

WE are content.

Off The Vent

Friday started off with Justin working her dialysis and removing only about 500ml, which is fine since she lost a 1000 ml yesterday. After getting her blood cleaned she then had a bath and the wound nurse came in and changed her tracheotomy dressing. she was off the vent about 6 hrs yesterday and on for about 4 this am but back off at 5am. She still complains about not being able to get her breath but it is hard to breathe thru a soda straw. This afternoon the green clad pt-ot girls sat her on the edge of the bed and had her work her legs and arms for 10 min.

Later the Dr. came in and said the fluid they took off yesterday appeared to be a result of her congestive heart failure (which she has had for the last 9 yrs) and the lab saw no infection. She has been off the vent since 5am and the plan is to leave her off overnight.

More later.

Thoracentesis Thursday

I think I have the right name - Thoracentesis... They removed the fluid from around Dorothea's right lung. You or I would have approximately 50ml of fluid in this location... they removed over 1000ml from her...right side only. We have not been told yet if they are going to do the left side. She said that it was painful, but she agreed that the benefits definitely outway the pain.

Around 1pm today they took her off of the ventilator and attached a T-tube to her trachea. This provides her with oxygen and allows her to breathe on her on. Yeah!!! They were planning on keeping her on the T-tube for 8-9 hours and then put her back on the vent overnight. Sounded like a good plan to us. She was breathing fine, keeping her oxygen saturation number high all day. However, she still complained that she felt like she couldn't breathe. We are guessing that she is feeling that way from the pressure from the fluid around her lungs. She and I also discussed that it might be a little bit of anxiety also. Totally natural.

PT came in today twice. The first time they came in and went through 15 reps of their leg exercises, and then repeated them all. They came in later in the day to work her arms. She doesn't particularly care for this...but she knows it is important. They did not sit her up a second time since she sat dangled her feet during the Thoracentesis procedure for about 15 minutes.

Typically I come during the day and John and Bob coming during the evening. I wasn't able to come until after 6 tonight but it worked out well since the boys were not able to come tonight. She definitely likes having company. When I was leaving she asked if I would ask someone to come in...so I asked her what she needed from the staff...she said - nothing - I just want somebody to come in and say hi. So sweet...

As I was leaving she told me that she wants the night to go by fast. I think she really misses Dad a whole lot and is anxious for him to return each morning. That is so reassuring to her. I am leaving town again so I am turning over the reigns to Dad for a little while. It is really hard to go - but mom was very sweet and encouraging me to go and have a great time. I really needed to hear that.

Tuesday evening/Wednesday afternoon

Tuesday Dorothea began to have a rough night. The nurse flushed her stomach feeding tube with 200 ml of water - which they do every 2 hours I believe. Then she started coughing really hard, and then she threw up. Harold was in the room so he was able to call for help and to catch most of it in a pan. This was surely a very traumatic episode. After she was cleaned up and calmed down, Harold turned the reigns over to John. Shortly after that Dorothea began to complain that she couldn't breathe. John called for help, however the nurses could find no problem. The ventilator does the breathing for her - they checked all of the calibration and the machine was working fine. This morning they found that she has fluid around her lungs, so perhaps the pressure from the fluid was making her feel like she couldn't breathe. Her anxiety level was high yesterday.

Today they did a sonogram on her back to determine where the pockets of fluid are located. They marked her back with x's and the lung doctor was planning to come in after his office hours to remove the fluid. They will use a procedure with vacuum bottles to drain the fluid. They are only doing her right side today. She did have dialysis today, removing 1.9 L of fluid, but they cannot control where the fluid comes off of.

Mid morning the nurse realized that there was an issue with the stomach feeding. I am not clear on how they discovered this, but the nurse removed approximatley 500 cc of the liquid food - it was sitting in her stomach and not moving on into her digestive system. At that point they turned off her feeding for a few hours. Harold told me they started it back up this afternoon but there is no explanation for what happened earlier, so hopefully they will be keeping a close eye on it.

The dietician came in and talked with Harold. She was proposing giving her dried banana chips in her stomach feeding - to help bulk her up. She definitely needs something to help her bulk up, but they decided banana chips was not the way to go. She already has high potassium, so Harold and the dialysis tech agreed that they did not want her potassium to be even higher. The dialysis machine removes the high potassium anyway - so if had the banana chips, the dialysis would remove it. Hopefully they will come up with another suggestion. She has lost much muscle mass and could really use something to help build her muscle and bulk up.

She was very quiet today, sleeping a lot of the time which is good. She has definitely had a stressful couple of days and that is weighing on both Dorothea and Harold.

Tuesday tears

Today was a rough day for Dorothea. Harold arrived at 8am and found that a few people were working with her... and she was crying. She was in pain, and for some reason she felt like he wasn't going to come today. Last night she asked him to stay later than normal too. I feel that she is dealing with some fear and uncertainty. All of the physical part of this has to be hard enough to deal with - but not being able to talk through this has to be equally difficult.

She complained of pain in her buttocks today - many times apparently. They are trying to alleviate that by propping her on her side a little bit with pillows. They want to move her throughout the day, which is normally good for the body. However, Harold feels like it causes some issues with her trach. When they suction her out it is bloody, he believes because she is getting irritated from the movement of the trach. This movement is greater with the vent attached to it. When she gets off of the vent and is able to use the oxygen shield this will be much better. They decided not to try to move her off the vent today. I think that was a wise move. They need to do it when she is calm and not in pain.

When PT came today that supported her in a sitting position on the edge of her bed for a few minutes until she could not take it anymore. She was complaining of cramping in her stomach when she was sitting up.

She coughed a few times while I was there - and it seems to cause her a great deal of pain. After she coughs (silently of course)she closes her eyes for a minute or so - I think she is dealing with the pain - trying to put on a tough guy appearance for me.

Early this afternoon she was having a tough time emotionally and dealing with pain, so they gave her a Darvocet to help her rest. She was asleep when I arrived, but woke up after a few minutes after I had gotten caught up on the news of the day. At first she seemed a little down...but I started telling her stories about last night and today and got her laughing. I guess that's my job. When I left tonight I told her that I would work on coming up with some more funny stories for her. Harold told a very funny story...with actions and voices...and she laughed so hard (silently of course) - it was great to see her laugh like that!

She doesn't remember alot of what happened in ICU, so I told her today about her receiving flowers from Steve...an old and dear friend of ours who stayed with us during high school. She has not seen him in more than 20 years - and she was so moved to know that he had sent her flowers!

Please continue to pray for both Dorothea and Harold, and keep sending your newsy notes. She really enjoys it when we read letters to her.

Monday

Dorothea had dialysis this morning, removing 1.0 liters of fluid. They attempted to get her off of the ventilator today, but was unsuccessful. I will relay the story the best I can... hopefully I will get it all right.(I was not there when this happened)

In order to make the change the respirator tech needed to deflate the cuff around the tracheotomy tube. When she did this, some bloody yukky stuff (do you like my medical terminology?) went down into her lungs. This made her cough, trying to dispel this yukky stuff. She was able to get some of it out through the trachea tube. It sounds like this was a traumatic event, and apparently she felt nauseated and I imagine she was a little panicky too. So, they quickly put her back on the vent.

Harold thinks that they need to have her sat up at a higher degree (45 degrees), and he is also going to request that they turn off the tube feeding shortly before making the switch also, so that her stomach will be clear.

Harold is a little frustrated with the lack of mouth care that is being given to Dorothea, so he talked with the Director this morning - he also found a hospital employee that was willing to share some supplies with him so that he can take care of her mouth when needed. This is all so frustrating. We want her to be taken care of like we would take care of her - 24/7. Unfortunately, that is not possible when each nurse has multiple patients and each person who comes in to see her is coming in for their specific area only.

Harold is a GREAT advocate for Dorothea. I am so thankful and so proud that he is willing and able to be at the hospital virtually all day, every day, to make sure to communicate with the staff and keep her safe and well.

PT and OT came in to see her today. PT worked her legs. Harold said that by the time OT came in to work with Dorothea's arms she was not interested in participating after everything else that had gone on today - so she wanted them to come back another day. She was in good spirits when I visited this evening.

Smooth Sailing Sunday

Dorothea had another easy day... the weekends tend to be a quiet time. I took Jessica up to the hopsital with me today. She is auditioning for a Shakespeare play at school this week, so I asked her to perform her monologue for Grandma - she loved it!

She moved her arms around frequently while I was there this afternoon, and even clapped for Jessica's performance. It is so great to see her moving freely without any pain at all. Hopefully this week PT can concentrate on getting her legs moving more - that would be great!

She is still on the vent, but we are thinking they will get her off it on Monday. She has been having good numbers on everything.

Relaxing Saturday

Dorothea had a nice relaxing, uneventful day today. No dialysis till Monday. She is still on the ventilator. The doctors want to give her lungs a little more time to rest.

John and Bob visited with her before lunch, then our family went to visit this afternoon. Brenda and Don both commented on how much better she looks now. Her color is really good, and her bruising has healed up. She is very alert and interactive, and has much more mobility in her arms than she had a couple of weeks ago.

Not much going on today since it is Saturday. They did get her up into a chair this afternoon, but they wanted to keep her reclined so far back in the chair (because of the vent I think), so it really wasn't much different than lying in bed. She probably would have preferred to just stay in bed because it is really exhausting when they move her. But it is important to get her moved around. It will be a lot easier when she is off of the vent. Hopefully that will happen by Monday and then they can start some therapy to help her with swallowing.

Friday fun

Dorothea has many people in and out of her room... all of the time it seems like. It is great to know that there are so many people working to help her gain her strength. She was on dialysis this morning - Justin - our favorite - was the dialysis tech today. Her roomate is also on dialysis so he was there most of the day. They decided to only take about 1 liter off today, and they have been giving her an extra 200 ml of water (in her peg tube) every 4 hours. They need to make sure that she does not get too dryed out. They think that may have been the problem the other day when her oxygen saturation was too low. Kind of a long explanation...so I won't go into all that.

Harold is having to really watch the staff to make sure they do not put any cream on her by-pass incision. The heart surgeon does not want any cream on it at all. However, they are supposed to put this cream on her other wounds... so it makes it confusing for the nursing staff. Harold is adamant about following the heart surgeon's recommendations so every day he refuses the doctors order to put the cream on.

She was still on the vent today... perhaps they took her off of it after I left though. We were expecting her to be off of it yesterday, so I am not sure why she was still on it.

She was in very good spirits today, alert, smiling, interactive. Physical therapy was scheduled to come in sometime this afternoon after I left.

Bob called while I was there and mom "talked" to him. Harold held the phone up to her ear so that she could hear Bob, and then when she mouthed her responses, Harold spoke for her so that Bob would know what she said. She really enjoyed that! I asked if she wanted to call someone else, but she wanted to wait for another day.We will definitely do that again - I imagine that was great for her to sort of do something "normal"! Thanks again for your continued prayers!

To PICC or not to PICC

Dorothea is still on the vent and very tired this morning. She did wake up enough to say "Good Morning" and smile. Her diarrhoea seems to be less today.
They did a chest x-ray this morning and were back an hour later saying the film had slipped and they needed another. As they were taking it The tech said "OK, Take a big breath and hold it." which seemed strange as she was on the Vent.
The second x-ray showed that her Picc line had shifted and needed to be redone. The nurse came in and pulled the old picc line out and moved up her arm to a new site and inserted the new picc line. She checked with an echo machine and thought all was well but then called for another x-ray to check. The x-ray showed that the picc was in the jugular and needed to be moved. After some time of moving back and forth she found out that she was running into the dialysis cath so had to try again. At last a new x-ray and good location.
Donna is back in town but made me do this one.
More tomorrow.

Drying Day

Dialysis was first on the list today and Justin(one of her favorites) got her started at 7:30 and got off 1.8 kilos before 11:am. Her blood pressure held up fine as Justin starts slow and comes up slow.
They are still concerned about her diarrhoea, but with the tube feeding (optmenteal) there is very little fibre and she is missing a valve in the gut.
Mouth care is going ok today.
It looks like we have the surgar under control. They have the lantis up to 16 units and are checking her every 4 hrs. at 11:am she had 164 and they gave her 2 units.
Her room has a west view from the 4th floor and we can see, about a mile off, Village west, which includes: Kansas Speedway ; The Legends At Village West ; Cabela's ; Nebraska Furniture Mart, Great Wolf Lodge, and CommunityAmerica Ballpark, home to the Kansas City T-Bones of the Northern League, and the Kansas City Wizards of Major League Soccer.The Kansas City Wizards will move into the Wizards Stadium Complex at Village Westin 2011; Schlitterbahn Vacation Village .
This afternoon PT came in and sat her up in a chair. While she was up they changed out her mattress for a Comfort level air mattress (her number is 4). As long as she was up anyway they combed her hair and brushed her teeth. After an hour in the chair Jennifer (VT) came in to try her on some Ice chips and talking. She did fine on the ice but by the time it came to talking she was so worn out she couldn't even say "Go Away". At 3pm she was back asleep.
4pm blood sugar 212 and another 3 units.
4:30 O2 down to 85, RT suctions and back ok. No cough since 3pm. She seems very dry.
5:15 O2 down to 85, RT suctions and checks blood gasses. 5:30 back on vent for a while.
6;30PM OVER TO John.

Working It Out

Today started with a new roommate for Dorothea, Dorothy. Working ok but seems like a smaller room now. Dorothea was awake and aware and smiling most of the day. Bob came in this morning and as he was leaving I put her cap on and she was able to tell him Good-By. Bob was thrilled. We are still training about her incision, must be kept dry so as not to separate. She got a visit from Dr Mackay again who says still no infection that he can find. The kidney Dr stopped by and said carry on. PT-OT came in and sat her up on the edge of the bed and worked with her on arm and leg exercises. They then had her stand up at the edge of the bed, with help, which she did not like at all. They left with threats of even more to come tomorrow. This was followed by the voice path. who fed her some ice chips and evaluated her swallowing. She did fine and then worked on speaking with the speaking cap for her tracheotomy tube. More swallowing tomorrow. She had a blood sugar of 238 at 4pm but they did not give her any insulin. I spoke to the nurse about this and she says they only give her a shot at 5pm. I asked her to check again and at 5pm she had 198. This of course affected the amount of insulin. I asked her to dose at the same time they check. She will check with the Dr. I think this is part of why we have been chasing high sugars. The PT Dr came in at 5pm to evaluate her strength (little) and range of movement (better).
More Tomorrow.

Busy Monday

When I got here at 8:30 am Mary(her CNA) was just finishing with changing her bedding. Her RT(Victoria) then cleaned her mouth again and we decided that every hour was a bit too much and now it is as needed.
Next in was the Director of Case Management, Ann M Ventrillo,RN, BSN, and said that we will have a treatment meeting every Tuesday AM. As she was leaving her nurse, Debbie came in with meds. before she left the wound nurse came in and took pictures of all her boo-boos and set up treatment for each. Then the PT and OT nurses came in and sat her up on the edge of the bed and evaluated her range of movement and strength of her arms and legs. As they were leaving the Speech Pathologist arrived and evaluated her speech and said tomorrow she will work on her swallowing.
The director of Clinical Services, Mikki R Bachman, RN, BSN, came in while I was out checking my kidney function. Glenn A. Mackay, MD Infectious Disease stopped by, she had him at Olathe, and said he was unable to grow anything new so we can leave off the robes and gloves. Then her Dialysis Nurse came in at 11:00 AM.
2:45 PM the Director of Medicine, Dr. Pratip Patel, specialist in Internal Medicine, came by and discussed her diarrhoea. Dialysis ended about 4:pm with only 1 kilo removed (she has had very little fluids and diarrhoea). As I was leaving at 5:30 pm Debbie was coming in with her insulin for a blood sugar of 188.

Quiet Sunday

Dorothea was very worn out today.We spent the day in working with the weekend crew in chasing some high blood sugars and increasing her oral care. She is a mouth breather when she sleeps and since she can not have anything by mouth her lips, tongue, and mouth get very dry and crusty. She is now receiving oral care every hour and her last blood sugar, at 5:30 was 214 for which she got three units of regular insulin.
Tomorrow she will be back on dialysis and start pt and ot. She hears every thing that goes on around her but chooses not to comment on most of it. She will however when pressed open her eyes and answer questions and smile and say thank you for all the care she receives.

More tomorrow.

Saturday

Dorothea was very tired today, which I expected. I had a feeling the move would wipe her out a little bit. She had dialysis today which also makes her tired. Harold is working to educate the staff at the new hospital... we have specific requests of how we want certain things done... yes we are sort of a pain. But that is okay - we are her advocate!

She is very funny... I visited for less than an hour today, and she was listening to everything I was saying... I would check with her every once in a while and see if she was listening... and she always was. She would smile at the jokes, but rarely tried to speak. They have removed the speaking valve, so she is mouthing words again. They also removed the oxygen in the nose, and put her back on the oxygen shield. I think they might have done the oxygen through the nose so that it would be easier during transporation between hospitals. She is doing fine keeping all of her numbers in a good range.

Before I left I asked her to please show me her eyes (because she had not opened them up for me at all) - and she did oblige. I am getting ready to go on a business trip for a few days, and I really wanted to be able to see her eyes, so I am glad she made the extra effort.

Her spirits are good, she is just very tired. Hopefully she will get a good nights rest, and be more alert tomorrow. She will not have dialysis tomorrow, so that will also help with her energy level.

While I am out of town Harold will be blogging... go Dad! :)

Settled in - Friday night

Dorothea is now settled in at the Select Hospital. She is doing well, she remained stable throughout the move.

The phone number to the hospital is 913-596-4000. She is in Rm 408. She is probably not able to talk on the phone yet. She will need some time to get used to the speaking valve, and to have enough energy to use it.

Tomorrow morning they will have someone take pictures of all of her wounds that she has coming in, and will have a wound specialist take a look at all of them. She heals so slowly... but she is healing.

Harold filled the nurses in on all of the details with Dorothea and made sure to come to a compromise in regards to her insulin. I expect that there will be a few days of "transition" as the nursing staff learns how sensitive she is to medications, and how brittle her diabetes is. It feels so good to know that she has improved enough to move on to the next step.

It's Moving Day!

Dorothea is moving today to the Long Term Acute Care center - called Select. Wow what a big day this has been!

This morning she was barely responsive and would not open her eyes... later on we learned that she had been given morphine last night. That explains it. Her hemoglobin was up to 12.3 - which is great. They now believe that the 6 she had yesterday was an inaccurate reading.

They removed her chest drainage tube today.

They put the speaking valve on her trach tube, and she is receiving her oxygen through her nose now. She is TALKING! Harold says that if she mouths something that he does not understand, then he tells her to use her voice, and she does! Wow - how wonderful it will be to be able to communicate with her.

This has all happened after I left the hospital - so I am hoping that I remembered to tell you everything I have been told.

She will be transported at 4:00 today, via ambulance I presume. Harold will follow along and make sure she gets settled into her new room and make sure that the staff knows all of the particulars about Dorothea. I will post again after she is transported and settled in.

Thank you, as always, for all of your prayers! Please keep them coming! She has a long road ahead of her.

Thursday

Dorothea had dialysis again this morning. They are doing extra treatments this week to try to eliminate fluid that has built up in her legs. The doctor says that it is working, but there is still more to drain off of her legs.

It was a busy morning in her room today! We were joking about people taking numbers and waiting in line in the hall. They will be removing her chest tube today. They will also take away the IV feeding since she is tolerating the stomach tube feeding.

She is itching today! Not sure what is causing it, but she says that her whole body itches. Of course that is super frustrating when you cannot scratch. She is scratching her chest area, since she can easily reach it - but I don't like to see her do that. Her skin is so thin, I am afraid she is going to scratch too hard. But then again, it is good to see her using her hands and fingers! Ha!

We gave her some lotion this morning - and it hit me - what good therapy that is for her hands - so we will try to remember to do that on an ongoing basis and help with her motor skills.

Her hemoglobin was down to 6 today... so they gave her 2 bags of blood. There has been no apparent bleeding, so this is a mystery so far.

She has remained on the oxygen shield, and is holding good numbers.

Wednesday morning

Dorothea is doing fine this morning. She is having a dialysis procedure early this morning, and is still on the ventilator. They are planning to remove her chest drainage tube (from the by-pass surgery) sometime today.

Last night the nurse called Harold at home and asked him to come back up to the hospital. Dorothea was insisting that he come up to the hospital and take her home. She says this from time to time - but this was different. Harold stayed with her, holding her hand, and reassuring her for a long time. Every time he told her he was going to go home her lips started quivering. I cannot imagine how difficult yesterday afternoon and evening was for my parents. Sometimes she does not remember what happened the day before - but this time she does. Scary day for everyone. It felt so good to come in this morning and have her alert and talking and feeling well.

As always, please keep the prayers coming for both Dorothea and Harold.

Tuesday late afternoon

Dorothea's great day went downhill late this afternoon. About 4:15 this afternoon Harold was standing next to her bed talking with her, all of her numbers looked good. All of a sudden she mouthed "I can't breathe" - and she stopped breathing.

Harold went into the hall and called for a nurse to come quickly. Apparently many nurses and doctors came to take care of her. They put her back on the ventilator immediately. I apologize for my sketchy details... I was not there, and I am having trouble remembering the details. The lung specialist performed some type of test and determined that her bronchial tubes are red and swollen. He believes that her bronchial tubes went into a spasm, which caused her to stop breathing. They treated her with atrovent.

The doctor says that she has a mild case of bronchitis. In you or me, it would not be a big deal - but for Dorothea it is much different.

She was stabilized quickly, and all is okay.

Standing up!

Wow - today has been a really good day! First thing this morning her nurse told me she was having a good day - and it has continued! :)

She was wide awake and talking with us for hours this morning. Okay mostly listening to me ramble - but she was participating in the conversations. I told her today that I have to talk a lot so I can limit how many words I have to lip read from her. LOL It is really challenging when she tries to start up a new subject...

They have had her on the oxygen shield all day today - hopefully tomorrow they will try to cap the trach so that she can try to talk. It will take a lot of effort on her part - so I told her that she needs to think about what she wants to say - she may only have enough energy for a little bit of talking.

They decided to go ahead and do dialysis again today - she is holding extra fluid in her legs. The doctor said it may take a few days to get that resolved.

She is continuing to be fed by both IV and stomach feeding tube, so she is getting lots of fluids. Her stomach and intestines seem to be working fine, no bleeding - yeah!

Physical therapy came in today and got her sitting up in the chair for quite a while and then stood her up 2 separate times for about 1 minute each time. They are supporting her - but the nurse told me that the second time up she could tell that she was taking on a little bit of the weight herself.

I was surprised that she was still awake and wanting to converse after all of that - but she was!

It has been a long time since they have been able to get her into a standing position - this was very exciting to hear about!!!

Please continue to pray for her strength and patience.

Monday

Dorothea was wide awake when I arrived at the hospital this morning. I come each day at 7:30, and usually she is still asleep and it takes a little while for her to wake up. Anyway - today she was wide awake and ready to talk. We talked for an hour or so - she was feeling pretty good. She is still on the ventilator, but they are hoping to get her back on to the oxygen shield later today. Since she was having dialysis again today, they wanted to wait until after that procedure before taking her off the vent. They are still needing to monitor her blood pressure closely (and dialysis makes it drop), so they kept her on the vent just to keep everything stable. She also still has an elevated CO2, but that number is coming down as well. Hopefully later today they will have her on the oxygen shield, and if she can keep her numbers good, then they may try to cap the trach again tomorrow.

They have started the peg feeding again today, hopefully her stomach and intestines are ready for it and will cooperate.

Physical Therapists came in today and had her dangle on the edge of the bed for a few minutes, and converted her bed into the chair position so that she could sit in a "chair" after they left. So, by the time I came back this afternoon she was pretty tired! She did open her eyes for me when I asked to see them before I left - but she mostly just wanted to rest. I knew she was listening to me talk, but she just didn't have the energy to participate.

Never a dull moment

Shortly after I left the hospital this morning, there was a little excitement in her room. Hopefully I will re-tell it pretty accurately. I was told the story by Dad and the nurse.

The day before Dorothea had the colon surgery they took her off of all medication. They started her back up on all mediations today. One of the medicines is called Coreg, it is a medicine which lowers your blood pressure. (Remember yesterday or the day before when I was talking about her blood pressure being low...yes, not a good idea) Coreg is a medication that she has taken for years. However, when she first started taking it she had a lot of problem with her blood pressure dropping every time she stood up. So, the doctors had her go back to taking a very low dose, and gradually increased it to where it needed to be. Well, since they stopped giving it to her when they did the surgery, her body was not used to it. Today they gave her a full dose of it - and it did its job - it lowered her blood pressure a whole lot - too much. It also caused her CO2 to be way off also. The nurse called for help and a Harold says there was a mob in the room - and they came quickly. They quickly got her numbers back where they need to be. They went ahead and put her back on the ventilator so to help get the CO2 back to where it needs to be also.

She was wide awake, talking and smiling when I came to visit her this afternoon, so this did not seem to affect her.

She asked me to get her some water and was very surprised when I told her that I couldn't do that. I reminded her that they tried to give her ice chips the other day and she choked on them. It is dangerous to give her anything to eat or drink when she has not re-learned swallowing yet. One thing at a time...

They did allow her to suck on a small sponge that was soaked with water. That seemed to appease her for now.

Sunday

Mom was feeling a little distressed late yesterday afternoon. Her numbers were all good, so she was not in distress - but she was saying that she felt like she couldn't breathe. I was not there, but after hearing about it, and talking with the nurse that was there, we feel that maybe it was a little bit of anxiety that she was experiencing. They gave her a little bit of pain killer which helped her to relax and be able to get some rest. She seems to still have some of the medication with her this morning though. When I visited her this morning she did not open her eyes, and it took quite a bit of coaxing to get a little verbal acknowledgement that she knew we were there. I expected this though - it will take a little bit for the medication to wear off.

She will have dialysis again this afternoon. Perhaps after that she will feel like waking up.

The respiratory therapist is hoping to cap off her trach late this afternoon or tomorrow - but she will need to be alert for that to happen.

Her hemoglobin number was good this morning - no bleeding has occurred, so it appears that the bleeding issue is solved.

Her wound on her wrist and under her lip is healing very well - Dad and I both are encouraged by seeing that. She is a very slow healer, but it is encouraging to see that the nutrition is staying with her and helping her to heal.

Saturday afternoon

I just spoke with John about his visit this afternoon, and wanted to pass it along to all of you.

Dad brought their wedding album up to the hospital earlier this week (right after their anniversary)- he has shown it to many of the nurses... and they have loved getting to see it! While John was up at the hospital today he saw the album and started looking through it, and then went through it with mom and had her telling him who people were and talking about all of the details of the wedding that he could see in the pictures. It sounds like it was a great time for both John and mom!

Saturday

Dorothea was receiving dialysis early this morning and was very alert. We talked about weekend plans, and I told her about a scary movie we watched last night. Harold brought in a letter from Lou and we looked through all of the pictures that she sent - I think she enjoyed that.

She did not have any bleeding overnight, but her hemoglobin dropped again to 7 - so they gave her 2 more units of blood during the dialysis treatment. There is no apparent bleeding, so we are not sure why the hemoglobin is dropping, so we will wait and see ... hopefully her numbers tomorrow will be back on track.

She is maintaining good blood pressure today,and doing well breating with the oxygen shield. Physical Therapy is planning on coming by later today and getting her up to sit on the edge of the bed.

Friday

Dorothea is still pretty tired after surgery, but she opened her eyes a few times, and was responding to questions this morning.

Her hemoglobin had dropped this morning, along with her blood pressure. They gave her two units of blood during dialysis which helped her blood pressure tremendously. They also gave her a bag of plasma to help boost the blood factors. She did have a little bleeding overnight. It is possible that it was from bleeding that occurred prior to the surgery. The GI doctor was in this morning and let us know that this is the time when we wait and see. She believes that she took care of the problem in its entirety - the next few days will tell us.

She is back to just IV feeding so that her stomach and intestines have time to rest after surgery. It will be a few days most likely before they are feeding her through her stomach tube again.

Since she was sedated for surgery they needed to put her back on the ventilator, but hopefully today they will get her back on the oxygen shield.

She is receiving wonderful care from so many people. I am also so very thankful that Dad is there at the hopsital so much, he is able to provide so much "extra" help to the nursing staff to bridge the gap between all of the different nurses. He knows mom so well, and knows what works, what helps, what methods different nurses have used. The nurses seem to really appreicate the extra knowledge that he brings to the situation.

Thursday

Surgery was postponed till about 3pm. I have had a couple of people ask why the valve has to be removed. The ulcerations are at the very top of the large intestine, and apparently on the valve as well, so they need to be able to remove that section and bring the small and large intestine together.

It is very important that they get this bleeding to stop. Since she has been in the hospital (not incuding the bypass surgery itself) she has been given 15 units of blood. An average human has 8-10 pints of blood in the entire body.

She dangled on the edge of her bed for a short time this morning, and then they configured her bed into a chair position so she rested in a seated position for quite a while.

I was there when the speech therapist came by today and I realized that she is the mother of one of Brooklyn's good friends... small world - I had no idea she was her therapist! Yesterday they gave Dorothea some ice chips to see how she would do with swallowing. Unfortunately it did not go too well, she was not able to swallow them and choked on them a little bit. After this surgery she will need a little time to recover and get the sedation out of her system, then they can start again.

She is still draining quite a bit from the chest tube, so I don't think that will come out today. She will have dialysis in the morning, although she will not have much fluid for them to take since she they cut off her feeding yesterday afternoon after deciding to do this surgery.

Wednesday

Dorothea was wide eyed this morning...it was so nice to see her beautiful eyes! :) I teased with her about being stubborn yesterday and not opening her eyes much, but she didn't really remember what I was talking about.

She had a dialysis treatment this morning. They gave her one unit of blood, they also gave her one unit of blood last night.

Someone from the LTAC came today to evaluate her records and see if she is ready to be transferred to the LTAC. They have basically said that the one thing that will keep her in the hospital ICU is her GI issue. She is continuing to throw blood clots, and her hemoglobin continues to drop. This afternoon they performed some time of scan that shows active "bleeds." They were unable to detect any. They are assuming that all of this bleeding is coming from the top of the large intestine where they found ulcerations previously.

Dorothea was awake and able to be part of the discussion with the doctors. She agreed to the suggested plan put forth by the doctors. They are going to go in laproscopically Thursday morning and remove a 2 inch section of her intestine. The problem area is right where the small intestine and large intestine meet. Apparently there is also a valve there in between the two intestines. I am not clear on how the valve will be affected by this procedure. Harold mentioned that this may make her diarrehea worse, which if you know Dorothea well, this is a big bummer.

Please keep your prayers coming for Dorothea, and keep them coming for Harold as well.

Tuesday

Happy Birthday Harold!

Dorothea has had a pretty exciting day so far... or at least we think so... she moves her finger around like woo-hoo - making fun of us for being excited. Anyway - here is what she has done before noon today.

She sat in a cardiac chair for 2+ hours, Occupational therapists helped her to wash her face and arms and brush her teeth. That is exciting! Again, she doesn't think so, but we do! :)

She is still being very stubborn about opening her eyes. The nurse said she could get her to open her eyes when she insisted that she do it. For me... it is like she is playing a game -and it is something she can control - and she is not going to do it for me. She did open them once for me when Don and I saw her around lunch time. Of course she only kept them open for a few seconds... but at least she did it when I asked her to.

Harold said that this morning Dorothea said that she felt terrible - but when he asked her if she is in pain she said no. So, we think when she is saying that she feels terrible - she is meaning that she is really down because of still being in the hospital. The nurse sort of said the same thing to me this morning- and she is thinking that is why Dorothea is keeping her eyes closed so much of the time.

Hopefully physical therapists will be in later today to move her around a little more.

Still hoping to get the chest tube removed today... there was no drainage overnight, but there was some today. I imagine there will be a little more today because of being up in the chair.

Monday

Dorothea was still very tired today. Early this morning she had a dialysis treatment and they gave her another unit of blood. The medicine Harold mentioned in yesterday's blog (Paragoric) seemed to be wearing off, so she had 7 bloody stools throughout the night. However,the sedative part of the medicine seemed to be hanging on.

Physical therapy and occupational therapy came later in the day and Dorothea dangled her feet over the edge of the bed for 5-6 minutes. She sat by herself for about 1 minute.

She only opened her eyes two times today, so the entire time she was sitting on the edge of the bed,her eyes were closed.

She would sometimes respond to questions when people would be persistent about getting her to answer them.

The doctors have altered her feeding to something more basic, which they say will be more easily absorbed in the small intestine, which will give the large intestine a break - so perhaps that ulcer can heal better. Hopefully I got that right and didn't misrepresent any of that! So much of this is over my head! :)

We are hopeful that the sedative effects of the paragoric will be gone by morning so that she can sit in a chair again and have the trach capped again and start anew.

Sunday

Yesterday afternoon Dr Miler suggested a method he had seen used to halt diarrhea, slowly titrated dosages of Paregoric. Since Dorothea's weight is about 62Kilos the minimum dosage would be about 15 ml. So he started her with 2 ml. As it turns out this was not only enough to halt the diarrhea but also enough to sedate her for the night and all of today. I was able to get her to open her eyes and smile only twice today but by 4pm she was starting to ease up some. Needless to say, he will try something else. She got another unit of blood this afternoon and will get another with the Dialysis tomorrow. She did have one of her chest drains removed today and the drainage from the other is reduced. She will have Dialysis tomorrow and hopefully be more aware.

Saturday

Today is Harold and Dorothea's 45th wedding anniversary!!! Happy Anniversary Mom and Dad!!! :)

Dorothea had a great day! This morning she had a dialysis treatment, removing 3.2 liters of fluid. During dialysis they gave her a unit of blood to help boost her hemoglobin again. She is still experiencing some bleeding - hopefully that will subside soon.

The respiratory tech believes that her breathing episode Thursday night might be from the following - she has a lot of secretions (gunk) that is in her lungs. She has a hard time coughing this up, so it builds up for a while, and then they suction it out through her trachea tube. He believes that the other night they had her bed flat, or nearly flat, when they were cleaning up her bed, and he thinks that she may have been choking on the secretions. So, they are planning to always keep her bed at least at a 30 degree angle so that cannot happen.

She sat in a cardiac chair today for 2.5 hours!!! Wow - yes I said 2.5 hours! She was awake the whole time too - which is awesomely amazing. A cardiac chair comes in flat like a gurney so they can easily slide her onto it, and then set it at whatever angle is comfortable for her. This is a much easier transition for her rather than moving to a regular chair.

I went up to see her this evening and she was tired, which I expected, but she did wake up all the way and talk with me for a few minutes. She always wants to know what's going on with everyone...

If you have a chance, please send her a note and let her know what is going on in your life. She loves to hear about things going on.

Tonight the nurse told me that they are considering removing her chest drainage tubes tomorrow (from her bypass) - that would be really nice!

Friday news

Dorothea had a good evening Thursday with the boys. They had a good long visit and she told them goodnight when she was ready to rest.

Sometime yesterday evening the respiratory tech decided to put her on oxygen (through her nose). We are not sure if that was a precautionary measure, or if she needed extra help. Late last night she had a pretty rough time with her breathing and her heartrate, so they put her back on the ventilator until things calmed down. She was put back on the oxygen shield early this morning right after I came in.

She had another bleed last night, so we will have to wait and see if that was an isolated incident or not. If not, then they may want to scope her again.

She was very exhausted from the trauma overnight, so she was not very alert early this morning. She had dialysis this afternoon. She will probably be very tired tonight and get some much needed rest.

We visited one of the L-TAC's yesterday and one today. We are very pleased with the one we visited today, so we will let the doctors know that when she is ready to be moved, we would like her to be transferred to Select Specialty hospital - it is on the 4th floor of Providence hospital in Kansas City, KS.
http://selectspecialtyhospitals.com/company/locations/kansascity.aspx

Sitting up in a chair, breathing on her own!

Woo Hoo! Dorothea sat up in a chair for about one hour this morning! Harold says that lots of nurses stopped by to talk with her when they saw her sitting up. I am sure they were all moved by seeing that!

They have capped the trachea, and she is breathing on her own, with no oxygen support. She has been able to keep her oxygen level around 95%, which is good. I imagine they will keep a close eye on her, and provide oxygen only if necessary. What a great morning!

We are going to visit the L-TAC this afternoon and check out the facility.

Talking!

Dorothea now has a new gadget...I am going to call it a speaking valve on her trachea tube. It allows her to talk without covering the hole. She is talking, but very softly still. The oxygen machine creates alot of noise, so it is still a little difficult to hear her. However, here is the plan for today. Later this morning they are planning on putting a temporary cap over the speaking valve. This will force her to breathe using her mouth and nose only - not the tube. This will allow her to talk normally. They will give her oxygen through her nose if she needs it. If she is able to hold her numbers without the oxygen, then they will let her do it all on her own. This seems like such a huge step forward!

Mom again said she was ready to go home, and she said she wanted to get dressed! It is so good to hear her have a sense of humor! :)

Harold told her about the plans for moving her to a L-TAC facility and she didn't seem to react at all to that - so that is good. She knows that is one step closer to home.

She was very alert and talkative this morning. They are planning on getting her up into a chair today, that would also be a very positive move forward.

Wednesday

Early this morning the doctors placed a new port for dialysis in Dorothea's chest. I am sure she is glad to have the tubes out of her neck! :) While she still had some sedation in her, they switched out her trachea tube for a smaller one. With this new tube, she will be able to talk. She was too tired today to try this, but hopefully tomorrow she will have more energy and try it. She will need to cover the hole with her hand when she wants to talk.

This afternoon she had dialysis. As usual, this procedure made her very tired. The physical therapists came when she was having dialysis treatment, so they were not able to do any work with her today. Her nurse did get her to dangle her legs for about 3 minutes though.

Looking forward to tomorrow, hopefully she will have enough energy to try to talk.

Tuesday's tale...sort of a mini-novel

Dorothea had a good morning and afternoon. She had one of our favorite nurses today, Candy. She worked mom's arms and legs this morning, and got her up to dangle her feet on the side of the bed. She will have Candy again tomorrow! :) and Candy is planning on trying to get her into a chair tomorrow.

Physical therapists came today also and had her dangle her feet over the side of the bed for 7-8 minutes, a few minutes of that she sat without assistance. And the big news for today is that mom brushed her teeth today! Bless her heart, that had to feel soooo good!

They have her scheduled for 8am Wednesday to have the dialysis port moved from her neck to her chest, then she will have dialysis Wednesday afternoon.

She has developed another infection in her lungs, this one is called Pseudomonas. Apparently it is a common bacteria, but her particular one is resistant to medications. Not exactly sure what that means, but no one seemed overly concerned about it. They are giving her medication to treat it, we will continue to wear a gown and gloves since she will remain in "isolation."

She has been doing really well on the oxygen shield, even overnight. The lung specialist told Harold today that they if she continues to do well this week, they will try her with a different tube on Thursday. I believe they insert a narrow tube into her existing trach tube, and she can attempt to talk around the smaller tube. Keep your fingers crossed - how wonderful it would be for Dorothea if she could fully communicate with us!

We had a meeting in the Conference room with doctors and nurses this morning so that we could all talk and listen to each other about where Dorothea is at, and what we can expect to happen. There are no time lines given of course, every person heals at a different rate. What we do know is that this will take a long time... long is a very vague word... so we will just take one day at a time. When she is ready to leave ICU, she will go to a Long Term Acute Care facility - L-TAC for short. L-TAC facilities will take patients with a trach tube OR dialysis...but not both. So, she has to get off of one or the other before this will be feasible. Once she is transferred to an L-TAC she will need to gain strength. (This has been a real challenge so far because of all the issues with feeding her - she just hasn't gotten much nutrition these past four weeks).

They do not provide rehabilitation therapy at the L-TAC though. A rehab facility would be her next stop on this journey, but they will only admit patients who are able to do 3 hours of therapy a day - in other words, till they are really ready for rehab. As you can see, this will be a long process. However, it is good to at least have an idea of what steps are involved. Harold began researching some of the L-TAC facilities in the area - there are 4 or 5 in the KC Metro area. One of the nurses suggested that we visit some of the facilities to get a feel for which one we like best, that way when she is ready to go, we will be prepared.

After we had the meeting this morning I was thinking about something that I have thought about many times in my life... what a STRONG WOMAN my mom is!!! She has dealt with so many health issues over the years, and she just keeps trudging right along. She doesn't complain about any of it, she just accepts her cross to bear, and keeps on going. Some of you may know these lyrics that give me strength and hope...

Here is part of it:
Strength will rise as we wait upon the Lord,
We will wait upon the Lord
We will wait upon the Lord

You are the everlasting God
The everlasting God
You do not faint, You won't grow weary

You're the defender of the weak
You comfort those in need
You lift us up on wings like eagles