Sleepy morning start
Well- another night of no posting to apologize for... I was just too sleepy by the time we got back to the hotel to write. Tucker (the bear) said he had enough energy but sadly Tucker has no fingers with which to type. So here we are with a sleepy morning post again.
Yesterday went REALLY well. It was another day of mixed blessings but the sum total was a giant leap forward.
Bad news first: Mom's right arm is definitely getting infiltrated now. Pretty firm and hot in places. But we got the pressure cuff moved to the calf under the pneumatic bandage and so all that remains in that arm is the (irritatingly positional) arterial line. We started her on warm compresses and elevation on that side. The left arm is overall improved slightly but there are still firm, swollen areas that have yet to start healing. Mom's temperature is staying up in spite of starting empiric, e.g. best guess, antibiotics. Cultures are still pending of pretty much everything. This is important because her CBC (complete blood count) had a doubling of white cells which says that there is an infection.
As of 5:30pm, when we left, Mom still had not had the tracheostomy yet. Dr. Sievers was totally slammed yesterday and simply hadn't had time. He actually wasn't able to come an update us until 1pm because of the nature of the other cases. Poor doctor. Poor families. Not sure whether he would have scrapped it till today or proceeded last night so we will see when we get in.
Now for the good news:
MOM IS DEFINITELY IN THERE!!!!
The morning was bad because she kept needing to cough which hurts her ribs and she was making herself exhausted and blue in the face trying. Plus there was the flurry of things that were messed up since we left that we had to spend 2 hours getting sorted back out for her comfort. So she wasn't very interactive in the morning at all.
Then everyone had to go so that we could get into our hotel (see humorous sidebar below), but we still hadn't gotten to visit with Dr. Sievers. So I stayed to check in with him. I really have started thinking that our visits as the family with our updates are almost as important for the doctors' understanding of Mom's case as the chart. Mom's arms had been really squashed when we got in that morning by the restraints so I decided to stay with her so her arms could rest (downside of less rest if my presence agitated Mom but figured we could adjust plan as we went along) and so I could catch our Doc when he came by.
So I held her hands and we rested together. She laced our fingers together and I placed her second hand on my forearm so I would have a hand free to catch drips from her vent tubing before they dripped on her. When not ministering to her needs, I was able to cover her second hand with my own. By clutching Mr. Sunshine squeak toy between my should and ear, I was able to rest with her and we both napped off and on. She was profoundly more comfortable this way and it seemed to soothe her.
Occasionally she would rouse and want to do something. We figured out her collar was pinching her neck a little and adjusted it, found some special itchy spots to scratch, cleaned some much gook from her eyes and nose and did some stretching with her arms. Mom also seemed particularly interested in her teeth (or lack thereof) and her hair. Erika had loaned me a small mirror and I asked if she wanted to see. She seemed to want that so I held it for her to show her how lovely she is and to prove she still has all her teeth. That seemed to please her and reassure her.
After a while, she kept making a motion with her hand toward her chest. It wasn't itchy though and I was quite confused. Finally I decided she wanted me to listen to her chest and leaned my head down between the wired and pillows to listen to her. Mom then slid her hand up to pet my head and play with my hair. After, she drew her fingers down to my cheek and we held her hand there a long time, just soaking in each other's love.
How beautiful and magestic our Lord to create such a perfect and perfecting creature of love and concern as my mother. The most special and rare of miracles in the world I have seen to date. Every day I am humbled by my gratitude for every moment with her.
All in all, we got three hours of Mommy time. Time I think we both needed, to reassure us that this can come out alright in the end.
For me, it was also very special because it was the first time that I have had to be with Mom where I wasn't responsible for unpleasant things happening. All the massage of sore parts, the hot packs, the suctioning, the catheter care and so on. It has been so hard to be the one who has to go in and plan the 'assault' each visit even though I KNOW these are the things that make and break critical cases. All the wonderful things she has done, for Brian and Roland, the smiling and the winsome gazes, I felt I was being denied because of my 'meanness' to her. To get some time to just love her and not have to be the medical advocate was an exquisitely prized gift.
After this, when the 'kids' from Team Shellener got back with Bill and Kelly, Mom was just a pistol. She was so jolly, smiling around her tube, and so emotive and 'vocal' with her concern. It was profoundly moving for us all.
Erika had to leave this morning, sadly, and so last night was her last visit for now. She went in to say goodbye and came out all trembly and short of breath. The light footprints of wonder were shimmering on her face and she looked at me and said Mom smiled at her. It was Erika's first smile from Mom. The first smile just for her. And as she said this, the tears began to well up and leak down her face. All I could do was nod. Yes, it is the most wonderful thing. That first smile that says she really knows YOU, that you are real to her and remembered by her. There is this delectable ache behind and between the ribs when it happens, as the breath is squeezed out of you to make room for more love. It is the feeling of the Grinch's heart growing three sizes that day.
-jacqui
Yesterday went REALLY well. It was another day of mixed blessings but the sum total was a giant leap forward.
Bad news first: Mom's right arm is definitely getting infiltrated now. Pretty firm and hot in places. But we got the pressure cuff moved to the calf under the pneumatic bandage and so all that remains in that arm is the (irritatingly positional) arterial line. We started her on warm compresses and elevation on that side. The left arm is overall improved slightly but there are still firm, swollen areas that have yet to start healing. Mom's temperature is staying up in spite of starting empiric, e.g. best guess, antibiotics. Cultures are still pending of pretty much everything. This is important because her CBC (complete blood count) had a doubling of white cells which says that there is an infection.
As of 5:30pm, when we left, Mom still had not had the tracheostomy yet. Dr. Sievers was totally slammed yesterday and simply hadn't had time. He actually wasn't able to come an update us until 1pm because of the nature of the other cases. Poor doctor. Poor families. Not sure whether he would have scrapped it till today or proceeded last night so we will see when we get in.
Now for the good news:
MOM IS DEFINITELY IN THERE!!!!
The morning was bad because she kept needing to cough which hurts her ribs and she was making herself exhausted and blue in the face trying. Plus there was the flurry of things that were messed up since we left that we had to spend 2 hours getting sorted back out for her comfort. So she wasn't very interactive in the morning at all.
Then everyone had to go so that we could get into our hotel (see humorous sidebar below), but we still hadn't gotten to visit with Dr. Sievers. So I stayed to check in with him. I really have started thinking that our visits as the family with our updates are almost as important for the doctors' understanding of Mom's case as the chart. Mom's arms had been really squashed when we got in that morning by the restraints so I decided to stay with her so her arms could rest (downside of less rest if my presence agitated Mom but figured we could adjust plan as we went along) and so I could catch our Doc when he came by.
So I held her hands and we rested together. She laced our fingers together and I placed her second hand on my forearm so I would have a hand free to catch drips from her vent tubing before they dripped on her. When not ministering to her needs, I was able to cover her second hand with my own. By clutching Mr. Sunshine squeak toy between my should and ear, I was able to rest with her and we both napped off and on. She was profoundly more comfortable this way and it seemed to soothe her.
Occasionally she would rouse and want to do something. We figured out her collar was pinching her neck a little and adjusted it, found some special itchy spots to scratch, cleaned some much gook from her eyes and nose and did some stretching with her arms. Mom also seemed particularly interested in her teeth (or lack thereof) and her hair. Erika had loaned me a small mirror and I asked if she wanted to see. She seemed to want that so I held it for her to show her how lovely she is and to prove she still has all her teeth. That seemed to please her and reassure her.
After a while, she kept making a motion with her hand toward her chest. It wasn't itchy though and I was quite confused. Finally I decided she wanted me to listen to her chest and leaned my head down between the wired and pillows to listen to her. Mom then slid her hand up to pet my head and play with my hair. After, she drew her fingers down to my cheek and we held her hand there a long time, just soaking in each other's love.
How beautiful and magestic our Lord to create such a perfect and perfecting creature of love and concern as my mother. The most special and rare of miracles in the world I have seen to date. Every day I am humbled by my gratitude for every moment with her.
All in all, we got three hours of Mommy time. Time I think we both needed, to reassure us that this can come out alright in the end.
For me, it was also very special because it was the first time that I have had to be with Mom where I wasn't responsible for unpleasant things happening. All the massage of sore parts, the hot packs, the suctioning, the catheter care and so on. It has been so hard to be the one who has to go in and plan the 'assault' each visit even though I KNOW these are the things that make and break critical cases. All the wonderful things she has done, for Brian and Roland, the smiling and the winsome gazes, I felt I was being denied because of my 'meanness' to her. To get some time to just love her and not have to be the medical advocate was an exquisitely prized gift.
After this, when the 'kids' from Team Shellener got back with Bill and Kelly, Mom was just a pistol. She was so jolly, smiling around her tube, and so emotive and 'vocal' with her concern. It was profoundly moving for us all.
Erika had to leave this morning, sadly, and so last night was her last visit for now. She went in to say goodbye and came out all trembly and short of breath. The light footprints of wonder were shimmering on her face and she looked at me and said Mom smiled at her. It was Erika's first smile from Mom. The first smile just for her. And as she said this, the tears began to well up and leak down her face. All I could do was nod. Yes, it is the most wonderful thing. That first smile that says she really knows YOU, that you are real to her and remembered by her. There is this delectable ache behind and between the ribs when it happens, as the breath is squeezed out of you to make room for more love. It is the feeling of the Grinch's heart growing three sizes that day.
-jacqui
posted by Jacqui at 8:28 AM
1 Comments:
Hello team Shellener!
I tried in vain to call and let you know that I had arrived safely back in frigid Boston, but I surmise you were deep within the bowels of the immense bastion of health care that is the LACH. At any rate, Jacqui, I'm so glad that you got to spend some quality time with your mom. I think it did you both a world of good. I think about you all often and pray that every day brings Pam more comfort and strength. Speaking of strength, Roland have you eaten? A muffin and coffee is insufficient for your total daily caloric intake. Everyone take your vitamins. I miss you and love you all.
love,
Jen
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