I can’t believe it’s already Wednesday! Today I finally felt inspired to start working on a new lamp design. Part of it was due to the studio cleaning on Tuesday. I eliminated clutter (well, kind of), actually put things away, and cleaned off the full drafting board surface. That surface hasn’t seen daylight in months! The design still has a ways to go, especially with choosing the right height and paper. I found inspiration from the beautiful cast iron pillars outside Gallery Calapooia in Albany. The gallery is currently accepting applications for 3D artists and I’m seriously contemplating joining. Another artist friend, part of the gallery, is strongly pushing for my application. Today I had enough brain power to download it and start assessing requirements. Basically the normal stuff: artist statement, bio, 6-10 images. I’m feeling my portfolio of lamps is a bit skimpy at the moment hence the new design idea. It would be nice to pull together a new lamp with a completely different look that ties together to that gallery.
Tom received a new dialysis port yesterday evening. I’m uncertain if they have chosen a new site all together or just new equipment in the old one. This will have been the 4th replacement over 4 weeks. Seems like the equipment fails rather quickly….
I’ve managed to take quite a few days off from traveling back and forth to Eugene. Instead, I’ve been dealing with the mountain of laundry belonging to my brother and conversations with grumpy business landlords. On Monday Tom made a monumental improvement by being downgraded to “step-down” ICU. The next move will be a standard hospital room but that time frame depends on Tom’s improvements. He was so tired and groggy when we visited last afternoon. His body had gone through dialysis in the morning, PT, and the move to a different section on the 4th floor. They are continuing to have him eat on his own but with serious supervision and in a full upright position. No choking or gagging on anything! They also are using a low flow breathing device over his tracheostomy site. I seem to recall that he’s taking in about 20% of a breath through the site. He gets very frustrated with how he’s not able to communicate successfully yet. Maybe this week he will be able to do more with a different sized plug for the throat. The initial one caused a lot of coughing and wasn’t comfortable.
We did get the TV remote control in his hands and that certainly made him happy. Eventually I asked the right question to trigger a yes response. He wanted the TV on, but he wasn’t about to let me change the channel. He wants control and the ability to do things himself. We like seeing the fighting spirit! We asked if he wanted us to stay and his response was a clear NO. So, we left.
Our cold temperature continue. It really feels like February, not November! The big ice storm caused major tree damage all over the area, especially in the hills. I managed to craftily discover a big patch of black ice on the road while walking dogs Sunday. Fortunately I fell on my ass, bloodied my palm, and seriously pulled some back and arm muscles. Things are feeling better today. With long term stress, I’m not as aware of my surrounding or my body. On Saturday, while going over a fallen tree in the woods, I whacked my kneecap on a branch stub. Man, that hurt! Another huge contusion and cut. More pain than the hand injury 3 days before that! At least I’m not whacking my shin with a sledge hammer like I did 4 years ago when my mother was in hospital. That hurt for a really really long time!
I think today is a good studio cleaning day! Less injury potential. :)
Tom continues to improve daily. He had yanked out his feeding tube back on Thursday night but they ended up approving of his swallowing ability so he’s now eating food. Dialysis continues but not on a daily basis. It’s now performed every other day and for just 4 hours. There is still hope that his kidney function will be regained. Another plus- the ventilator has been disconnected and he is able to cover the tracheostomy site in order to talk. The voice is very soft, but he can actually communicate now! Problems continue with heart function: he was experiencing fibrillation during the night. To alleviate the issue, they have placed him on medication and it is resolving the problem. Physical and occupational therapy continue: they are working on building his strength so he can stand and walk again. He’s been spending more time sitting in a chair. So far, he’s been a good patient once the medications wore off. Saturday he shifts to “step-down ICU”. Another positive move! How are his mental functions? That’s still coming back. He forgets where he is and why he’s at the hospital. I think his recognition of people is pretty good. I’ll know better later today or tomorrow when I go down.
The current time line shows him remaining at the hospital until December 16th. On that day we have a discussion with a Medicaid representative on how to deal with the next stage of care. He will need to move into a rehabilitation facility. We don’t know if he will still have the tracheostomy at that time, or if they will close the site. If it’s open, then he will be heading to Portland for care. It’s doubtful that he will remain a business owner for long. I already have angry business landlords calling demanding their monthly rent ( they are a pair of grumpy old curmudgeons!). The previous owners of the business (Tom purchased it back in May of this year) are probably going to have to regain ownership. I’ve already fielded quite a few calls from them. In order to protect myself and the healthy siblings, I spent 35 min talking with my lawyer. We need to stay completely out of the worm can. No financial connection is best. If Tom were to qualify for Medicaid, they would cover the entire bill and any additional facility costs and therapy, but I don’t think he will. Guess I’ll be doing some research in my spare time.
On the home front, we’ve been experiencing cold weather! Finally, a frosty morning today. The freezing rain continues to cling to many trees. the hillside across from us was glinting silver during the afternoon sunbreak. Tom’s laundry, unceremoniously dumped into huge garbage bags and tossed in my garage since we moved him out of his apartment, has finally been completed! Now I just have to repack it and take it back to Eugene. Dave was thrilled to be able to park the car in the garage again without having to stumble over the bags.
It’s been nice to take a few days off. Too bad I’m still connected to everything via phone, texts and the internet!
Last night I was just tired and didn’t want to do an additional brain dump, even though things are looking better as the hours tick along. Wednesday, Dave and I spent a few hours with Tom in the morning. We were hoping to catch the doctor on his rounds, but it didn’t work. Tom was already 20 minutes into his 4 hr dialysis and the nurse took him of more of the sedation so we could visit. When a patient receives a tracheostomy, the procedure happens below the vocal chords. This cuts the air movement over the area creating speech and sound, so the patient is unable to talk. Tom was trying his darnedest to talk to us. We tried giving him a pen to write with, but that was too dangerous. He didn’t have that set of motor skills yet. His night was uneventful, which made me so happy! The nurse had ordered physical therapy for later in the day. 22 days in bed makes everyone pretty grumpy. There was also talk of getting a speech therapist to come work with him and evaluate the screwy swallowing ability. At about 1:40 remaining in his dialysis, we had to leave due to a clot that had formed in the machine. The dialysis nurse gowned up and we took our cue to exit. It was already noon by then so we wandered around to new areas of the hospital we hadn’t visited (sky bridge connection, a different coffee shop, wandering through the surgery waiting room). Terribly exciting! After a bit of lunch, we decided to head home. Other family was coming later in the afternoon and evening.
By 6pm, Tom was receiving some PT! They actually got him into a chair and changed around some of his breathing tubes so it wasn’t a giant bulky mess attached to him. He was able to sit and watch some basketball, which he was really enjoying. If you put sports on, he’s a happy camper!
Today, Thursday, I’ve decided to take a day off from the hospital. Probably a good choice since we received a good dose of freezing rain this morning. I doubt it affected the roads much, but I’m pleased to just sit back and watch the birds visit the feeder and branches slowly thawing out. Last night I spent some time with a girlfriend who I’ve not seen for years. She prepared a beautiful gourmet meal with wine so I didn’t have to think about what to cook for dinner (and it will feed us tonight as well!). Jen, if you’re reading, we both thank you so much for the yummy stuffed squash and all the extras! May your journey to the Bay Area go smoothly and be filled with much love!
I’m off to watch the birds again!
Most people don’t spend a whole lot of time in ICU. They don’t get to meet the multiple nurses and doctors that take care of the patients every day, all day. Our situation is different. We’re building some very nice friendships with the different nurses. Some are so outgoing and really enjoyable to talk to. Others are much more reserved and don’t want that connection. Oh well. Today we had one of those very straight gals. No warm fuzzies flowing off her!
At 2pm, Tom underwent the tracheostomy procedure. My husband, sister and I arrived about 3:30. We were able to watch the process of bringing him off sedation to a level that he was more coherent. Since the procedure, Tom is free of tubes in his mouth and throat (until you get to the trache spot). He was mouthing words to us, but it took me a bit to understand he wanted WATER! He actually requested it and he was thrilled that I understood the request. I think he really wants a pen and paper too. Maybe tomorrow we can figure more things out. Anyway, he is most certainly anxiety ridden and pretty freaked out by the whole place. Kim spent a bunch of time explaining that he was at the hospital and everyone there was trying to make him better. It was heart breaking. He wouldn’t let go of Kim for quite a while until he “comprehended” things a bit more. I would like to think we’re starting a better phase of things, but we just don’t know right now. He will be in a lot of pain from the surgery and I’m pretty darn sure his abdomen remains pretty painful too.
I was just happy to see something in there that actually resembled my brother.
I hated leaving him in such a scared situation. Unfortunately, I couldn’t handle being in the space any longer. The stress of it all (having him wake up and struggle with the communication) just blew me away. I came close to fainting (I’ve been there and recognize the signs). Dave will be accompanying me there in the morning. Hopefully more positive things will happen tomorrow.
Off to have some dinner and a movie. Maybe even some sleep tonight, but not likely.
Since I’m tired and want to make dinner, here is my write up posted on Facebook.
Not such a great day today. We did get filled in on missing information regarding my brother by talking with both nurse and the doctor (each having a different view on the situation). On Sunday Tom became overly agitated and confused by everything. He was thrashing about so severely that they thought it best to remove his breathing tube. After doing this, he started yelling and screaming to the point of where he wore himself out after some time. This was when his breathing started going downhill and they intubated him again (2:10am Monday). After consulting with both dr/nurse, we learned Tom’s cognitive abilities really were not all that great. He was about 50/50 with his responses and often got the answer wrong. So Monday’s visit was with a sedated brother. The family agreed to the staff performing a tracheostomy on Tuesday to remove the irritating throat tube but remain connected to the ventilator if needed. The doctor wants to get Tom off all sedation and narcotics to better evaluate what’s happening in his brain. They are looking for consistency in responses and he’s not doing that yet.
They remain puzzled by why his heart rate starts to decline and not pick up without the extra assistance. His body also takes twice as long to clear medications. An average person will clear some of the narcotics in a day to 48hrs. Tom is taking a week. His body is just so screwed up right now. Kim and I will be back in for a late afternoon visit to see how the procedure went. Maybe Dave too. We shall see. The doctor was pleased by Tom’s fight Sunday. The nurses had the opposite view.
Wow, we’ve been at this for 20 days today.
I’m sure tomorrow will bring a whole new batch of things to be concerned with… but that’s tomorrow. Tonight I’m going to grill some salmon, roast veggies, and drink some wine. I’m also super thankful that I’m not the first person the hospital calls to request permission. It’s a blessing to live 50 miles away, but I do feel horrible for my sister who lives there in town.
We’ve been in a stale mate for a couple of days regarding my brother’s health. There was a huge infection in his abdomen that was drained along with some breathing difficulties back on Thursday. This morning, my sister-in-law called the hospital for an update and it was actually a little positive. Tom was responding to some of the questions with ‘thumbs-up’ and head shake ‘no’. His eyes are still not focusing, but he’s actually hearing and processing something. I’ll be down there this afternoon to see him before we have another meeting with the current physician. A group of Tom’s old Theta Chi buddies came for a visit on Friday. I think they helped bring him back into the responsive world.
We will see what the rest of today brings.