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!