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.