Hospital

It’s been a rough couple of weeks. Several times, Mary has waken up and asked “where am I?” and “why am I here?” The anxiety has been back, and her pulse rate was up a bit. When I visited last Sunday, she had the best day she’s had in months – she smiled, she listened to Harry Potter (audiobooks) with me, she was awake almost the entire time I was there.

Then Sunday night, the anxiety started up again. Meds weren’t helping, her pulse rate kept climbing, and her blood oxygen levels were slowly falling. Tuesday, they added oxygen to her ventilator (she is normally on room air). Wednesday night when I skyped with her, her pulse was running between 140-150. That night around 3am I got a call; anti-anxiety meds hadn’t helped, pain meds hadn’t helped. They had done an EKG and she was in what they termed “A” flutter. I told them she had never had that before. We discussed options, and decided to try an IV medication first. I asked them to call me back with an update. About an hour later, they called me back to say she was back in normal sinus rhythm and her pulse rate was down around 80. All the follow up tests of cardiac function and tests for blood clots came back normal. We have no idea what triggered the atrial fibrillation.

The Respiratory Therapist was concerned that the inflated cuff in her trach tube (that holds it in place in the throat) might have a leak, so it was changed out completely for the first time. When I visited her Thursday night, she slept the entire time I was there, but her vital signs were all within normal range and her face was relaxed for the first time in two weeks. They turned the extra oxygen off. As of today, she is still on “room air”, her vital signs are normal, there have been no more heart issues. She has been asleep since before I got here two hours ago; she hasn’t woken up.

Also this week, In the middle of all of this, I called the ALS Clinic for a letter to trigger durable Power of Attorney. Mary is completely paralyzed and physically unable to manage her financial and legal affairs. Her facial muscles are also starting to have issues, so it is getting harder to read her lips when she mouths her words. The eye gaze device is still not working for her. The speech therapist who had been working with her had her hours cut to half-time and she has been unable to see her for nearly a month.

And Adult Foster Home #3, after three weeks of not returning phone calls, called the social worker late Wednesday and said they were “declining” Mary’s case because they didn’t realize she was on the vent 24/7, which is ridiculous because we told them that three weeks ago. Out of the nine homes in Oregon licensed to care for patients with ventilators, three have not worked out. She is still on the waiting list for the other 6. Now we wait for another bed to open up, and hope it is a reasonable distance. There is only one more option that is close to my route between work and home; the other five are anywhere from one to two hours away. Last week, Mary said that if this group home didn’t work out, she wants to wait for the next one, because she wants to have a chance to find out if she can find a way to communicate, which seems like it can’t happen until she is released from the hospital. I do have the number for the local sales rep for her eye gaze device; I plan to call her next week and see if she can come in and help us find something that will work.

Yep, still in the hospital.
They did manage to find staff for last night to sit in the room and monitor everything. This morning, they did another Arterial Blood Gas test, and the results weren’t as good as we had hoped. They had to change some of the ventilator settings. They repeated the test a couple of hours later, and it was better but still not in the target range. Soooooo we’re stuck here another night. And they are still having to staff a nurse in this room with no other patients. I’m sure the charge nurse isn’t happy, but too bad. I’m not happy either.

One positive note: the caregiver who came by yesterday for an in-person interview went well! We are looking forward to having her at the house to start training. I’m waiting to hear back from our other caregiver who just got back from a vacation to let her know what’s been going on and the updated plan.
We invite your prayers and thoughts for a successful ABG and finally a trip home.

I (Denise) totally went off on the charge nurse this morning. The Durable Medical Equipment provider came by to switch Mary’s Trilogy from bipap mode to ventilator circuits and settings. The charge nurse said to the nurse and DME provider out in the hallway, “I didn’t know you were coming. We can’t put her on it today it will have to be tomorrow – she’ll have to be back on the hospital vent tonight.” I went out to the hallway and said, no, the plan was for today. She’s supposed to be discharged tomorrow. This has been the plan since Friday!

The case manager joined the conversation too. Somebody dropped the ball and didn’t schedule extra staff for tonight – their system can’t monitor the Trilogy from the nurses’ station, so they have to have a nurse in the room monitoring overnight. The charge nurse finally went off to find someone to come in for 7pm tonight. The nurse came in and talked to me and said this charge nurse is like that. I told her we’ve been in THIS room for 10 days, right across from the nurses’ station. I’ve seen this guy around, I never knew he was a charge nurse, he’s never even made eye contact with me let alone step foot in the room or meet Mary. The other charge nurses come in throughout their shifts and check on us. I also vented to her about them changing staff on us every day (she’s new this morning to Mary). She went through Mary’s chart notes and read off the name of every nurse she’s had in this unit so I could make a list and make specific requests if/when we’re back here. I know I’m dealing with frustration, lack of sleep and my own anxiety about this whole thing, but seriously, don’t make us suffer because you idiots can’t communicate! About an hour later, the charge nurse came in to Mary’s room (for the first time EVER) and said that everything was set up for tonight. I could smell the cigarette smoke on him. So, he’s the charge nurse on a Respiratory Care unit, where they are trying to convince COPD patients to quit smoking, and where there is a big sign that says “NO SCENTS OR PERFUMES” and he can be in here smelling of cigarette smoke?

I can’t wait for the “Patient Satisfaction Survey”.

On another note, we are expecting a potential caregiver for an in-person interview in 30 minutes, and I had a phone message from another potential caregiver. I also contacted our neighbor who is a hospital Respiratory Therapist, and she is indeed very familiar with trachs and ventilators and is willing to be a resource for us out in the boonies where we live. Just our luck to share a property line with her!

The last couple of days, Mary’s anxiety level seems to be improving. I did have a little scare in the middle of the night last night when the vent alarms started going off and two people ran into the room as I rolled out of the cot. She was still sound asleep but hyperventilating (40+ breaths per minute instead of 13) and some other numbers were about half of what they should have been. Turns out she had been “rained out” – too much water in the tubing to her ventilator. This is very similar to getting “rained out” on an apnea machine. Once the Respiratory Therapist drained the excess water and made sure she hadn’t inhaled any of it, all was quiet again and back to the new normal. There was another bit of info to add to my toolkit. I’m very glad it happened while we were here in the hospital so I’ll know what to do next time.

On another note, with the tentative plan to discharge her on Tuesday, I’ve been learning trach care. I learned how to suction out her trach yesterday, and I’ve been doing it today as well. The nurse on duty today was here yesterday and she said she had watched me suction enough that she is comfortable with me just suctioning Mary and not calling in a nurse unless something else is unusual. Yesterday, I changed the inner cannula for the first time, and I just did it for the second time. That’s a little more challenging than the suctioning, since I have to go more by “feel” when placing the cannula, and I have to make sure the ventilator line is securely reattached. I’m sure once I’ve done it a couple more times, it will be second nature. I also changed the dressing around the trach stoma by myself today. Progress!

We had quite a few visitors today. Mary’s brother and his wife drove down to visit for a while. They brought some more pictures to show Mary, and he asked some questions that gave me the opportunity to share with him the early signs of ALS. He knows he has a 50% chance of being “predisposed” for ALS with both their mother and Mary having ALS, but he chose not to have genetic testing done as of now. I mentioned that his daughters could also have it, and saw his eyebrow raise just a little. I’m glad he’s been giving this a little thought, because Mary and I weren’t sure he understood the implications of Mary’s diagnosis.

Just as they were getting ready to leave, another of Mary’s old friends that she hadn’t seen in 20 years came by. They stayed for a little while and promised to come back in two weeks. Mary was able to communicate a little with all four of them, nodding, smiling, winking, making faces, and mouthing words. About a half hour after the last of the visitors left, her ALS neurologist, Dr. Kimberly Goslin, stopped by to check on her. I filled her in on the discharge plans and she stated that we both actually looked more rested than the last couple of times she’d seen us. (HA!) She also mentioned that I looked less stressed; I told her she should have seen me last Friday when they wheeled Mary off to the operating room. She said she is hoping to come by again on Tuesday morning.

The pulmonologist was just in, and again expressed concern about the amount of morphine and ativan she is getting. I assured him we were working her back toward the doses she gets at home. He really doesn’t know her history (her usual pulmonologist is out of town). I told him yesterday that her morphine dosage is exactly what her home prescription is written for. I’ll give you that she’s not been taking ativan regularly at home, but she does have it. He doesn’t know that Mary already suffers from anxiety and has been managing this entire disease process for the last 14 months without taking any anxiety medication. I’m not overly concerned about it, and Dr Goslin didn’t seem to be either. So one of my projects is to run down to the car to see what the ativan had been written for on the home version so i have a target to make the pulmonologist happy.

It’s been a week since Mary’s trach surgery. Physically, she is still recovering well. Last night and this morning, she woke up without an anxiety attack, kept calm and smiled. Later today though, we had a couple of times where mucus was building up in her trachea, and that caused quite a bit of anxiety until we got it suctioned up.

Last night I interviewed a potential caregiver, and this morning I interviewed another one. I plan to do in-person interviews with both of them, hopefully while Mary is awake, and see how it goes.

This morning, the respiratory therapist had me change the inner cannula myself, and I suctioned out her trach several times today. I’ve been watching like a hawk and asking a ton of questions for the past week, so I was ready to try it. I’ll be taking on more of that care with supervision over the next couple of days since once she’s back home, I’ll need to be doing it.

If things continue to go well, the company that provided Mary’s Trilogy will come out on Monday to change it to a ventilator, then Mary will spend the night on the Trilogy with a 1:1 nurse monitoring it since it can’t be monitored from the nurse’s station. Again, if all goes well, the plan is to take her home on Tuesday.

I’m a little concerned about the caregiver situation still. We still need at least 2 more people, preferably 3, to cover the hours we need for Mary’s care. Her home health nurse is working on some of his connections to see what he can find out, and I’ve made a list of people to cold-call and see if they are interested/available.
I spent some time today getting some of the features set up on Mary’s Tobii: her Facebook and Gmail accounts are set up now. I am still struggling with getting Skype to work without crashing everything, and I need to get her phone synched to text message through the Tobii, but making progress. I also spent several hours going through and cleaning up her gmail inbox, which had over 7000 emails in it when i started working on it a couple of weeks ago. It’s ok if you tell her, I’m following the guidelines she gave me: what to file and where, and what to delete. I’ve got it down to just under 4000 emails now, nearly 2000 of which have never been read (!) Good thing they are mostly mailing list notifications that can be deleted!

Tomorrow we’re expecting a visit from Mary’s brother and sister-in-law, and they may be bringing one of her old friends.

This is our fifth night in the hospital, the fourth since Mary’s surgery. The last two days have been busy; we had several visitors yesterday who brought food and clean laundry and even some laughs, and a chance for Denise to take a shower! The two nurses who worked with Mary on Saturday after she was moved out of ICU requested to work with her again yesterday, and she also had the same Respiratory Therapist, so that helped our comfort levels. Mary had been experiencing quite a bit of anxiety adjusting to breathing through the trach tube instead of her nose; suddenly unable to feel any air moving in or out makes it feel like you aren’t getting any air. By Sunday evening, we started backing off on the anti-anxiety medication so that Mary would be able to start adapting to all these changes while awake. She slept a little better Sunday night, so did Denise.

Today, Monday, started off much busier. Things never stop in a hospital, but for some reason there is more activity during the week. A new nurse, a new respiratory therapist, a new pulmonologist… so much to re-negotiate. A nurse case manager stopped in to talk about the plan after Mary is able to leave the hospital; her insurance and the staff here feel it is not necessary for her to go to the long-term care facility. Their plan is to discharge her to home as soon as everything is in place. This means the biggest issue is once again caregivers.

I called her DHS caseworker to let her know her status has changed and ask about increasing her hours for in home care. I’m waiting for a response on that.

Our one current caregiver is out of town on vacation this week. I have been trying to find other caregivers, and finally got responses from two potential caregivers over the weekend, at which time I asked for their resumes and told them she was in the hospital. I contacted them both again today to let them know she would be going home sooner than we had originally expected and that I would like to start interviewing this week. Fingers crossed! I also need to call the one agency that is willing to work with us, and let them know the current status and see if they have been able to find anyone who can work with Mary.

Please send your positive thoughts and healing energies for Mary’s anxiety to be relieved and for us to find the right caregiving team for her to safely come home as soon as possible.