Home sweet home

{Click for update: Five years later}

We just pulled into the garage a few minutes ago. :>)
We stopped and dropped her prescription off at Costco after pulling off the freeway. Looks like her lungs are in good enough shape that she doesn't need oxygen at home after all.
More later . . .


http://picasaweb.google.com/KarAndNor/OHSU02/photo#5172611655438979986

First report from thursday

F seems awfully tired this morning. She said she slept. So I'm assuming she's tired of being here and not at home. Physical Therapy had already been here once we arrived.
She said that they took her for a walk to the door and back. That's the equivalent of a trip to the bathroom at home. Hmmm, maybe that's why she's wiped out.
N and I, were talking on the way up trying to figure out what to do next. We need a guide. We wondered how it would work to go through the insurance company since they have all of her records. Even though I broached the subject of where or who to ask for a second opinion with her lead doctor yesterday, I have my doubts as whether he'll come back with an answer. Why didn't I ask the stethoscope man? Maybe being a professor would be a benefit??
Her nurse, Casey, came in to have her walk yet again to the door and back.
Dr. Hardman and Dr. Feuquay came in after we'd been here a short time. They expressed concern about how much she desats when she walks from the bed to the door of the room. They also said they'd double check to make sure the CAT scan was still scheduled.
The transport person arrived about 5 minutes after her lunch tray. And before they had her on the gurney, Dr. Ramsey (one of the pulmonary team) arrived to examine her. At first Dr. Ramsey was going to check back later, but then decided to dart into the room instead. Good timing, as F was experiencing one of her bouts of not being able to hear while attempting to sit up and move.
Dr. Catherine Markin and Dr. Ramsey, of the pulmonary team, came in to see her around 3:15. They said that her CAT scan looked much better. It showed scar tissue from whatever the event was that began all of this. They still think she aspirated something into her lungs or that she suffered damage from the ventilator. No one knows for sure. Dr. Markin gave it a name - hypoxia due to diffuse alveolar damage. And she framed it with, "those who survive this will need oxygen for a period of time whenever they exert themselves". They also said that her lungs should be nearly back to where they were in a year. Dr. M also said that the CAT scan showed the pneumonia down in the right lung, but they knew that was there from the scope. She's going to give us a name of an ob/gyn here at OHSU. Someone very good - "he's been around and he's very wise".
UPDATE:
We heard the news today, oh boy. :>)
F is going home tomorrow morning! YAY!

first half of Wednesday

N and I, drove up this morning after I finished updating the journal and uploading photos from the camera. Little did I know that he was planning on driving back to Salem after seeing how F was doing to go to work for 4 hours. I could've just slept in a chair last night to save him the trip. The lives of the martyrs. ;>
F didn't get much sleep last night. Three helicopters landed at different times throughout the night on the building across the way. Nothing like a little adrenaline to keep a person awake. Her neighbor, kept turning her light on between 5 & 8 AM and began to complain that she wanted her breakfast. She probably couldn't sleep either.
The general medicine team came in to tell F that things were looking good as far as her lungs recovering - going by her oxygen level which is down to 1 liter. They're still planning on doing the CAT scan tomorrow. So Dr. Hardman's prediction that she will be able to go home tomorrow probably won't materialize. Don't tease my girl!
She's been napping off and on. Ate a good breakfast, but only picked at her lunch. I think her mom should be fired from selecting her menu.
The doctor with the cool UK stethoscope came in this morning to try and record her "Hammond Crunch" noise with his digital stethoscope hooked up to an ipod. It's not quite as loud as it was, so he didn't get a good recording. Then he came in again after lunch to see if a student would be able to hear the minute differences in heart sound. What fun being an oddity! Probably wouldn't help on a resume, though.

Good or silly bits I've forgotten

When we were getting ready to leave F last night, N reached down to pick up his shoes. Something caught his eye. He held the shoes up higher to get a better look. They were both brown, BUT they didn't match. It's the first time in his life he's had two pair of brown casual shoes. Maybe there's a reason he's never wanted more??
I've been trying to mention the nurses whose compassion leaves an impression on us, but while musing in the shower this morning I realized I've left some out. Vern, one of the standouts in the ICU, who made sure her IVs were redone and done right. I like that he asked if we wanted to buy some strawberry plants from his 7 year old son who he's trying to teach the value of a dollar. Lisa, the quiet ICU nurse, who was always there when we needed her and watched her oxygen levels like a hawk. Jeff, the ICU nurse, who covered us up with warm blankets during the wee hours of the night. One, whose name escapes me, who worked in a small pod of ICU rooms. She took the time to tend the 3 of us (Lisa, too) as well as to take excellent care of F.
While looking out F's window yesterday, I noticed a man on a sidewalk with a huge banner way down below. The banner read, "shame on you, Dr. Frank". At least that's what we could see through the vegetation. Must be an interesting story behind that.
I'm sure I've left something out, but it's a beginning.
http://picasaweb.google.com/KarAndNor/OHSU02/photo#5172611655438979986

Tuesday

We didn't get to the hospital until about 10:45 this morning. N needed to show someone at work how to do a task. Not long after, Ken & Karen arrived to visit F. She appreciated enjoying their company and sharing stories with them - as did N and I. Now all she has to do is keep her chocolate away from her ma. N, me and K & K, ate lunch together and had a nice visit at Slice of Heaven. I think I've forgotten any of the details I knew about Rachel's time up at the children's hospital in Seattle. Time to ask for a refresher.
F has had a good day considering how a different person/event woke her up nearly every hour from 3 AM until daylight. We kept waiting throughout the day for the doctors to arrive. One doctor did come in before we got here and told her they were going to start giving her antibiotics. Probably for the staph they found in the one test result. Of course the team arrived 15 minutes before we returned from dinner. They told her that they would know more tomorrow. They'll continue the antibiotics and it's possible they'll do another bronchoscopy on Wednesday. They said they found some odd cells and I guess they want to investigate further. She didn't mention a biopsy, but that's what they said would happen with the second bronchoscopy. I'm starting to feel like we need to eat at separate times, so as not to miss anything.

Tuesday 2 at OHSU

So much for technology . . . Let's see how much I can remember what I'd typed before the computer crashed,
When we were saying goodbye to F last night, I noticed her legs were warm again. I knew a temp was coming on, even if it wasn't registering on the digital thermometer yet. When we got here this morning, we found out her temperature registered at 101 sometime after we left. They decided to do a blood culture at 3 AM and again at 12 PM. The tech who came in to take her blood at 3, turned out to be a an ex-roomie of friend Kasey.
"Where are you from?"
"Salem"
"I have a friend who works at Salem Hospital."
"Me, too."
"My friend's name is Kasey."
"Mine, too"
Pretty funny.
She's been fortunate to have a great CNA named Dinah and two great nurses, Ted and Megan. :>)
The team and the Russian pulmonary fellow came in separately today. They were happy to see her oxygen down to 1.5 liters, but they're concerned about her temperature and that they still don't know how she ended up like this. They're holding off on the lung biopsy, but they've scheduled a CAT scan for Thursday. They're continuing to give her antibiotics for the staph.
Friend Karrie, who works at OSHU, brought her own lunch to eat while sitting with Sara AND brought her a mint chocolate chip nestle ice cream sandwich. :>)
I called Donna today to let her know I'll be here for the remainder of the week. I asked about the possibility of using family medical leave. She said that she had recently looked into that for another employee and found out the district family leave doesn't cover tending a child over 18. They only cover tending a spouse or parent. It's assumed that a child over 18 will have a partner or a spouse. How ridiculous and idiotic is that??!
What a heart wrenching story we heard this evening. N and I, were on our way back to F's room after dinner in the cafeteria when we ran into our old Salem neighbor, Dave and his wife. Her daughter came down with encephalitis in December. Salem Hospital said there was nothing left they could do for her after a month. A doctor there suggested they take her up to OHSU. Her immune system was out of control in response to the encephalitis. So, the doctors gave her a big dose of chemotherapy in hopes of slowing it down. She had a seizure that has left her severely brain damaged instead. She no longer recognizes her parents and is on a respirator - possibly for the rest of her life. I wanted to reach out to her and give her something substantial to shore her up and sooth her raw nerves/emotions. Nothing like a wake-up call as to how much worse things could be.

It's Monday

On Saturday, F had a lot of visitors; Randy, Gwen, Shirley, Nathan, Karrie, Kristen. She hadn't slept much the night before, so it was tough for her to tolerate too much talk. A nurse named Kim, came in at F's request. Her heart rate had been way too fast and she had been feeling a tightness in her chest again. One of the pulmonary specialists had told her she needed to let them know if that happened. Instead of coming into the room to listen, the nurse entered on a mission to get F up and out of bed - possibly even on a walk. She told F that "yes, I know you have pancreatitis", but I do this all the time, this is what I'm good at. All 3 of us began to panic, sure that this person didn't have a clue as to who she was with. F tried going nose to nose with her to tell her to back off and listen, which worked somewhat. I tried to tell her that a respiratory therapist had cautioned all of us about F getting up because of her desatting. We finally made some progress in getting through to her and she began to listen. We found out the next day that F does NOT have pancreatitis. It was a patient down the hall.
Sunday was a much better day for her, since she had been able to sleep. A doctor came in to visit her with a cool stethoscope from the UK. The pulmonary person on call came in to tell that they had found a form of staph from her bronchiscope, but that it's possible it came from her nose or mouth.
We're getting ready to go, but N had to head to work for a short time. K and K are planning a visit today. That will make her day.

OHSU continued

F has been here since Saturday, Feb. 16. She's been in the ICU 3 separate times and on OHSU's 7th floor in the Veteran's building twice. The first time was quite short, as they soon realized they had moved her too soon. The second time they found out how to better monitor her oxygen levels. She had an awesome nurse named George when we were over there the second time. She really appreciated how he didn't talk down to her at all and would go find answers to questions. Two CNAs were great, too - Tim and Eden.
She has several teams monitoring her progress - pulmonary, thoracic surgeons and internal medicine . She has pneumonia and has trouble staying oxygenated at times. Her recovery after a desat has improved greatly, but she'd like to get to a place where she doesn't need the mask. The nose cannula is much less of a hassle for eating, drinking and talking, but it doesn't transfer as high a rate of oxygen. She has pockets of air in her chest. They're not sure if it's a result of being on the respirator or if she has a small hole in her lungs. They call her a mystery and we keep hoping for answers.
One of her friends, Karrie, works as a CNA (or is she in the nurse's training program?) at OHSU. She has come to stay with Sara twice during our daily runs home to freshen up, feed the lonely Zuzu and pick up mail. For that we are very thankful.
F misses home and we miss the mundane normalcy of our lives.

OHSU . . .

F came down with a fever on Tuesday, Feb. 12. It was holding steady around 101 - 100 degrees. On Thursday morning, her temp rose to 102.4. I called Dr. Weeks and they fit her in for a late morning appointment. Dr. Weeks, thought she might be having a drug interaction from a sulfa antibiotic given her about 8 days before for a skin infection on her abdomen. She had someone from the lab come to the exam room to draw blood and urine. Then they sent us home.
On Saturday, she was having a tough time resting, eating and drinking. I kept trying my best to keep fluids going. Late Saturday night, she began speaking phrases that didn't make any sense. Norm slipped the bp cuff on her and her pulse registered at 129. We scooped her up and took her in to the emergency room at Salem Hospital.
They quickly assessed that her arterial blood was not being oxygenated. She complained of not being able to hear or see well and that her hands felt numb. they took her in to do a cat scan of her head and an xray of her chest. Very soon after that, they put her in an emergency area that looked more like an ICU and put her on a respirator. the doctor told us that he felt they needed to do that to make sure her body was receiving sufficient oxygen. He also said that they'd have to transport her to another hospital since their ICU was full. They put her on an ambulance with a respiratory therapist, ICU nurse and the two paramedics and drove her up to OHSU with lights flashing.
Scary, scary time.
Jon was with us. We drove home to get reading material, feed the cat and send out a quick email to family and friends.
Continued later . . .

Tuesday

We didn't get to the hospital until about 10:45 this morning. N needed to show someone at work how to do a task. Not long after, Ken & Karen arrived to visit F. She appreciated enjoying their company and sharing stories with them - as did N and I. Now all she has to do is keep her chocolate away from her ma. N, me and K & K, ate lunch together and had a nice visit at Slice of Heaven. I think I've forgotten any of the details I knew about Rachel's time up at the children's hospital in Seattle. Time to ask for a refresher.
F has had a good day considering how a different person/event woke her up nearly every hour from 3 AM until daylight. We kept waiting throughout the day for the doctors to arrive. One doctor did come in before we got here and told her they were going to start giving her antibiotics. Probably for the staph they found in the one test result. Of course the team arrived 15 minutes before we returned from dinner. They told her that they would know more tomorrow. They'll continue the antibiotics and it's possible they'll do another bronchoscopy on Wednesday. They said they found some odd cells and I guess they want to investigate further. She didn't mention a biopsy, but that's what they said would happen with the second bronchoscopy. I'm starting to feel like we need to eat at separate times, so as not to miss anything.