Its 2:00 am
Sharing a past post because this is where I’m at today. Tonight has been a real struggle….
The pastor in this story lost her husband a year after Lori passed. The thoughts that race through your heart knowing your dying wife is planning her funeral Mass. The blood in your ears is deafening and you can’t help the tears in your eyes,she is dying and I am dying with her. I would trade my life for hers but God’s ear is closed,He must be taking a nap.
Its 11:00 pm Friday
Long day here…..got up early to give Lori her meds. Last night’s plan to attack her pain and not let it get to nausea was working great…had a good day of food intake and water as well…even climbing the stairs was good as she managed to climb them without stopping once. I stand behind her just in case she loses balance,she doesn’t climb the stairs until I am home. Things were looking great…I gave her the last med of the day,the vankomycin at 1 am and we both went to bed.
At 3:10 am I felt her jump out of bed,I was right behind her…just in time for her to become violently ill.It was just awful,all I can do is hold her and help her through the incident. I then clean up everything,have her rinse her mouth out and get her back to bed as soon as possible. Its back to square one all over again…
Today we puttered around the house a bit,we have started gleaning through Lori’s clothes…tackled a huge bag and divided them up…we kept some,gave 3 bags full to our neighbor Marlene (Crash’s mom),put two aside for Purple Heart who will be by Saturday.
Then she cleaned out a hutch and I took some boxes to the local consignment store. When I switch my wardrobe to the summer,I too,will start the process of downsizing. Its just an another step in the journey.
Lori then took a nap for a couple of hours before we had to head over to St. Thomas a’ Beckett for a 2 pm appointment.
We met Debbie Miller who ushered in Lori into a private room,she was going to join the church and also ask about a Catholic burial. I sat outside and read a little church journal that they give out after Mass on Sundays. The secretary came out and started moving the boxes,I chipped in and moved the four boxes to where she directed me to and then sat down.
As I did,I noticed a pretty blonde woman coming out from the pastor’s office and a young man heading in.
She was looking at the CDs and I couldn’t help but ask if they were for a wedding meeting. She shook her no and I could see tears in her eyes. I stood up and apologized for intruding,she said it was okay.
Turns out she had just gotten a divorce,one she never wanted. She and her husband had only been married about 2 years. Seems like he was more in love with his work then her. Turns out he was a engineer at Ford and they had moved him to Louisville,Ky to an apartment for 10 months while he worked on the 2013 Ford Escape. She stayed here to work and continue to go to school. She mentioned that she even turned down a promotion because it would cut into the time she could spend with her husband. She said when she had visited as of late,he wasn’t happy to see her and seemed resentful. She said she knew it wasn’t another woman but his job that he was in love with and soon he asked for the divorce.
We talked for another 5 minutes and then she hugged me and left….
I sat back down and started reading my booklet again…15 minutes later Lori came out,both women had tears in their eyes. I thanked the pastor for her help and gently walked Lori back to the car. I shared with her the woman who I had just met…we made small talk as I stretched out the drive back home.
Friday night was quiet and we celebrated as Lori didn’t have her nasty nausea that leads to her having a vomiting episode. This was pretty exciting to say the least!
Saturday rolled in cold and brisk,after washing up…I headed down stairs to get Lori’s morning meds and her breakfast. I quickly cleaned up around the house and pulled some steaks out. Lori’s brother and his wife were driving down to stay with us this weekend. We were both very happy to have them both,Brian has really been aces these past 3 years when it has really counted. They got here at 12:30 pm and we enjoyed a soda (Lori had lemonade) and chatted before I had to leave for work. Turns out that they had made a ton of good food that they wanted Lori to try and eat. Normally,this would have been great but since they don’t really know how restricted a partial bowel obstruction diet really needs to be. Brenda(Brian’s wife) is a great cook and she made a lot of homemade soups. They really felt that Lori could handle this okay,we were both very sure this would be a mistake but we agreed to try it.
Our neighbor Marlene and her son Dylan came down to meet Brian and Brenda and we ended up borrowing Marlene’s grill to cook our steaks. I set up the table and helped prepared Lori’s soup.
Dinner was good but the soup was very rich and Lori only ate half.
An hour later,she lost it….but after that they seem to finally understand that we have been trying anything and everything to help Lori eat AND retain it. Sunday morning found me saying “good-bye” to Brian and Brenda as they were leaving at noon to head home…it was a great visit overall and we really enjoyed our time together.
Monday morning came round and we got early to get ready for our visiting nurse whose name is Amy…those of you who have read this blog for a while know why the name Amy is so meaningful to us. Our nurse Amy is a no nonsense yet compassionate nurse who really seems to like her patients,she is the one who taught us how to injection the antibiotics that were needed to kill Lori’s E Coli infection and she’ll be the one to show us how to do home hydration as well.
At 10 am Amy came by to draw blood for Lori’s appointment with Infectious Diseases but couldn’t get ANY blood. This was a bad sign as it meant Lori was dehydrated once again because she had thrown up a huge amount the night before. Phone calls were exchanged and Dr. Rusk instructed us to head to the ER again and he called ahead to clear the flight plan so to speak. It took me an hour to help Lori get a shower and dressed,she was pretty weak in the legs. Finally we were on our way once again….the 20 miles flew by,I turned on the Tigers baseball game and she fell asleep almost as soon as her head hit the backrest.
We rolled into the ER and walked into a full house of patients. I got a mask for Lori and checked her in,based on what I was seeing,I should have brought a book because there was no way we were going in front of at least 30 people. I got my visitor’s badge and started to wheel Lori to the waiting area when the nurse said “Nope,we have been expecting you and held a bed for you”. I was very grateful and said “thank you” to all the nurses at the Triage desk.
We were put in Room 47 and I helped changed Lori into her gown as a nurse got her two warm blankets.
As we sat there,the nurse did vitals and said that Dr. Rusk wanted X-Rays done. Our nurse,Mike,said he would be back to start the hydration…5 minutes later X Ray came and got Lori. Now that just doesn’t happen hardly ever that fast so it pretty cool to see Mike come in and see Lori was already gone to x-ray.
Soon she was back and hooked up to her hydration IV. Two different doctors came by and wanted to do a CT scan and to do this meant Lori would have to have a NG tube placed down her throat again…she really didn’t to do this as it was such a awful ordeal last time. I was absent when it happened the first time because the room was too small…but I was going to see it this time. She started crying because she knew it was going to hurt…a lot.
The two nurses came in and told us what to expect…and can I tell you,it was awful. I held her hands as they inserted the tube,but they were missing a couple of pieces they needed and start scrambling to find them while Lori was crying. You sort of want to scream “What the fuck!!” but you don’t,you have entrusted these two to take care of your loved one. I only said “Really????” as they hurried to finish the inserting of the NG .
Lori said the tube was in too deep and asked for it to pulled back a little…we ended up having to wait an hour for doctor’s orders for another set of x-rays. While we were waiting the ER doctor came in and said it looked we had a full bowel obstruction and if the CT showed that,he said we would be facing surgery. We both looked at each other and quietly shook our heads “no”.
Soon after Lori was wheeled into x-ray again and sure enough,the tube was in too deep and it was a painful process to withdraw it a little. While we were recovering from that,Dr. Brown from Lori’s oncology team showed up looking none too pleased with the fact they had inserted the NG,she said they should had waited for a consult before doing that and that Lori didn’t have a full obstruction. She canceled the CT scan because she wanted Lori to rest overnight.
Now here is what sort of twists us up..see,Lori really didn’t get a chance to eat like she usually does. During the course of a day she can drink 3 Boosts,pudding,chicken broth and other clear food items…its at the end of the day where she will present the vomiting. But with a empty stomach and already throwing up due to the NG tube,she wouldn’t show in the hospital what we have seen here at home. We’re afraid they’re going to observe nothing,send her home and then we’ll be back in the same cycle.
Because that is exactly what has happened….she had a painful night with the NG tube but did not have a measurable bile output nor did she throw up. Dr. Brown pushed back her CT scan until Thursday and we can do it at the medical clinic where we get our infusion.
I picked Lori up at the hospital after a 2.5 hour wait to be discharged and drove us home. I made a quick run to CVS for a prescription and then stopped at a Chinese diner and picked her up some soup which she ate with no problems so far. She has been sleeping pretty much since we got home…
Tomorrow I have to make a appointment to take Ginger in,I’m afraid her kidneys might be failing. I am really hoping I’m wrong but my heart is telling me I’m going to be right….not the news we need to hear right now.
Got more lovely cards today….another sweet card from our journalist friend Amy,my old bosses from my music days Ann and Jacek (your words made us both choke up Ann,you are a wonderful writer!) and Lori’s co-worker Jo sent her a Easter card. Thank you to all of those who continue to send cards and notes. Including a wonderful tray of jello from our friend Cheryl,a very talented piano teacher who played at our wedding….feel free to keep them coming!!
I’ll write again after Thursday’s CT scan and results.