Hospital

Caregiver Journal – After Surgery

Journal entry by Denise Allen — 

It was now Friday afternoon. Morgan stayed for an hour or so with Mary and I. The ICU staff was great – the nurse brought in a reclining chair so I could stay with her overnight. Originally they were going to have me leave at shift changes (standard policy) but after they reviewed her medical history, med list and allergies, and realized she had no way to communicate since she can’t move her hands to write at all, they decided to just shut the door to maintain patient privacy while they made reports.
Mary and I struggled to find out how to communicate because she wanted to say so much more than answer yes/no questions that we had planned for. I was lipreading her and interpreting for the nurse, doctor and respiratory therapist. I finally ended up writing out a letter board. After several frustrating rounds, I explained to Mary (after slowly spelling them out) that “crackle” and “struggle” are hard words to lipread. She did have (and continues to have) quite a bit of anxiety. Every time she woke up, she would start panicking that she couldn’t breathe. We would explain to her that all her vitals were good, that she needed to breathe through the trach on her neck, that she wouldn’t be feeling any air in her nose or mouth if she tried to breathe that way. This continues to be the hardest part – it is the one thing that all the trach patients we talked to mentioned – the difficulty and anxiety around adapting to a new way of breathing.
I spent Saturday morning working my way through Mary’s list of phone calls, texting and emailing people to let them know, then posting on Facebook. She slept through it all.
On Saturday afternoon, they told us she would be moving back to the Respiratory Care Unit once they shuffled some patients around so she could be right across from the nurses’ station. Michelle dropped off a package that had been delivered to work and also dropped off refills of the prescription the hospital doesn’t have. Kathy came by with a care package, and took laundry home with her to wash for me. Brenda brought another care package and went out to get dinner for me. Kathy, Brenda and I sat in the family waiting room while they transferred Mary to her new room, then I went in first to make sure everything was there that was needed. This time, I had the Kangaroo Joey pump in my arms, and the ICU nurse personally brought over her prescription, and all the equipment. Kathy stayed a while until Brenda came back with my dinner, then headed out with laundry. Brenda stayed a while to make sure I was eating (a challenge since we arrived), then I sent her home. It was close to midnight though before the cot arrived for me to sleep in.
By that time, we had realized Mary was running a fever that was slowly going up. Labs were taken and we waited for results. The nurse consulted with the charge nurse, and it was decided to continue monitoring her closely before taking action since she had just finished a Z-pack last week and has so many allergies. It was a long night. Finally her fever broke on its own some time around 4am. I woke up as the shift change rounds were happening, tried to sleep a little longer, but Mary woke up again with some anxiety and by the time we got her settled down again, the caffeine withdrawal headache was in full force. I realized I had only had one cup of coffee yesterday. Egads! I ran downstairs for a scone and coffee and came back up to her room.
We are expecting a few visitors today, and I am hoping while a couple of them are here I will be able to make a trip to the car to put some things in and bring some things back, and take a shower.
By bansagart, ago

Caregiver Journal – Countdown to Trach

ER

Journal entry by Denise Allen — 

Last Wednesday I got a call from the caregiver that Mary was having trouble breathing. Off to the ER where she was diagnosed with bronchitis and given antibiotics. Since then, we’ve been using the suction machine to clear secretions.

Sunday night, she woke up in the middle of the night with a lot of mucus buildup. I woke the caregiver up to help. Two hours later we had it cleared enough for her to fall back to sleep.

Round 3

Journal entry by Denise Allen — 

We finally made it home about 3 hours after my last post, 8:30 on Wednesday morning. She stayed in bed all day, sleeping, resting and watching tv. I got a couple of hours of sleep. Thursday morning, the caregiver and I got the hoyer sling under Mary just before 7:30am in case she wanted to get up later since I would be alone with her all day. She was still tired a feeling a little congested. As the morning passed, she started to feel more sinus congestion and complained that it felt like mucus was building up in her throat again.She said she thought she had a cold.
I called the ALS clinic and explained what had been happening. We were told we had done all we could do at home, and that it was time to make a decision. Mary told the clinic nurse to get things going for the tracheotomy. I started packing up everything we might need for the next few days, and arranged to have the cat and dog boarded at our vet’s. The paramedics and ambulance arrived and we loaded Mary up. I took all our bags in the car, stopping to drop off the animals, and followed them in to downtown Portland.
The ambulance arrived about 15 or 20 minutes before I did, and apparently there was quite a bit of confusion. They took her to ER, which was the plan, but the ER sent her up to Short Stay saying she was scheduled for a procedure.
After tossing her around a bit, they sent her back down to the ER. One of the paramedics called me as I was parking to let me know about the runaround (his word!) and which room in the ER she was in. I walked into the room to see a nurse and an xray tech trying to pick her up to slide an xray film behind her, with her head falling off to the side. I ran in and stopped them, explaining how to move her and how to position the film without hurting her any further. After that got taken care of, they took some labs and started an IV. The nurse said it would be half an hour or so before results came in, so I ran to the cafeteria to get some food to bring back. When I got back to the room no more than 10 minutes later, Mary said that a doctor had been by and talked about the surgery and that he would see her tomorrow at noon. What doctor? No idea. He didn’t talk to the ER doctor or chart any notes. Mary didn’t remember most of what he had said, but she thought he said he was the ENT surgeon. She and the nurse had both asked him to wait for me to get back, but he was apparently in a hurry. Finally, they got her admitted and sent her up to the respiratory care unit.
I went over her medication list a second time, explaining what she was currently taking, asked for a kangaroo pump and formula and some scds for her legs. Hours later, we had the feeding bags, but still no pump or formula. Then we got the pump but the hospital apparently didn’t have any of the formula she is using. They also didn’t have one prescription she needed. By this time, I was fuming at the lack of coordination and communication. Fine. I ran to the car and grabbed the case of formula and prescriptions I had brought. It was after 11pm by the time Mary got some nutrition, and she would be cut off pre-surgery at about 12:30am. She got the meds I had brought, and I asked the nurse to put them in the fridge since the ice packs were now getting warm. Finally around 3am, we both tried to sleep.
CNA Morgan came to the hospital Friday morning, and helped out as we waited for them to take her to surgery. We went round and round with the staff about where Mary would be going after the surgery. First it was ICU, then it would depend on the surgeon and pulmonologist. Then if she was in ICU I wouldn’t be able to stay overnight. Um, just how were they planning to communicate with her? No, she can’t use the call bell. She won’t be able to speak or cry out. She won’t be able to throw something. My blood pressure was rising again.
I refused to sign the procedure consent until I spoke with the surgeon, whom they finally got on the phone. After speaking with him, I said I needed to speak with the anesthesiologist before signing the form, because of Mary’s multiple allergies. I was assured she would be returning to the same room, so off we went downstairs. Hurry up and wait. That nurse came in. AGAIN I went over the meds and allergy list. No I hadn’t signed the release yet. The surgeon came in. No I hadn’t signed the release yet. Yes, I know you’re waiting. Oh, so they changed anesthesiologists last minute? I told Mary “good thing I hadn’t signed yet!” and she nodded. The new anesthesiologist came in. We talked, He actually listened. He answered questions. I signed the form. The pulmonologist assured me she would be going back to her previous room in the Respiratory Care unit and said they would come and get me when she went into recovery so I could help them communicate with her.
When they took Mary for the surgery, Morgan and I went up to her room to put something with her things, and the room had been cleared out. I was furious! We went to the nurses’ station and said she was supposed to be coming back. A very rude nurse replied, “no she’s going to ICU”. I explained that the doctors had all said if there were no complications they didn’t see a need for her to go to ICU. “Well, we don’t have a bed for her now” So where’s all her things (and mine)? Already in ICU. Where I can’t get to them. I was soooooo angry. Morgan and I went down to the cafeteria to grab a quick bite, then went back up to the waiting area. It was less than an hour before my pager went off and I was in a consultation room waiting for the surgeon. The surgeon said it went very well, then explained that apparently the hospital has a policy that all new trach patients go to ICU for at least the first 24 hours. I asked if I could go see her in recovery and she said she was already on her way up to ICU and I could see her as soon as they got her settled.
Why couldn’t someone have just told us outright at the beginning that she would be going to ICU?
None of the equipment that we had fought to get the night before made it to ICU, so once again we had to wait for the Kangaroo Joey pump for her tube feedings, the scds for her legs, formula (which surprise! they DID have in the hospital!) Sitting on a table in her room were all the meds I had told hospital personnel three times already that she wasn’t currently taking. I asked if they had brought her prescription from the refrigerator. That started a 12-hour hunt that had a pharmacist going through every med fridge in the hospital. We ended up giving Mary an alternative that the pharmacist found. They did eventually find it in the ward she had been in. A nurse went to get something out of their lunchroom fridge and saw a prescription in there. Not sure who put it in the wrong fridge, but thankfully they found it!
By bansagart, ago

Caregiver Journal – August 23, 2014

Morning:

Mary’s been in St. Vincent’s now since Wednesday, August 20. That morning was her third trip to the ER in less than 2 weeks for severe abdominal pain; they decided to admit her. (I was in Salt Lake City starting Tuesday and she had caregivers 24/7 while I was gone; Mary insisted I didn’t need to fly home early, so I arrived home on Friday, August 22.) One of the complications of ALS is that your abdominal muscles atrophy, which means certain bodily functions start slowing down and it takes a great deal of outside help to make things move the way they should. Overnight last night, things finally started working, and now we are waiting for the doctor to come by and see if it’s good enough to send her home or if they will keep her another night. My younger two kids are flying in this afternoon for their first visit since her diagnosis.

Later that day:

Mary was doing well, and about to start the discharge process today, when there was a slight problem with her pain medications. Best we all can figure out is that the pain medication had been sitting in her stomach from the previous dose when the next dose was administered, followed by finally getting some additional fluid in her stomach and BAM! a bit too much pain medication was activated all at once. Plan B: She’s spending another night in the hospital, back on the tube feeding now that the pain meds have backed off. Fingers crossed she will be discharged in the morning!

By bansagart, ago

Snippets

She sleeps
I watch
Her jaw relaxed, her brow relaxed
I kissed her when I came in
She didn’t stir
 
She sleeps to the hiss-hiss of the ventilator
the whirr-whirr of the Kangaroo pump
the shhhhh-rrrrrr-shhhhhh of the air mattress
The sounds of hospital staff on the other side of the door
have become her lullaby
 
A knock
A nurse
“Time to be turned, Mary”
 
“Hi” she smiles
I ask “Are you happy to see me?”
“Of course I am” she mouths
We pull her up the bed
put pillows under the other hip
the catheter leaked on the chux
it will be bath time soon
 
Housekeeping comes in
I wipe the sleep from her eyes and she drifts off again
 
Penny took Sheldon to Disneyland
“I never go to go to Disneyland”
No, you didnt, My Love
And I am sorry
We didn’t make time for that
© 2015 Denise M Allen
By bansagart, ago

When you need to go to the hospital

I live in a small town – population 600. We have a fabulous volunteer fire department with volunteer paramedics who work closely with the local ambulance company. I know because while Mary was alive, they were frequent visitors at our home.

The closest hospital is 12 miles away. They know nothing of ALS; they didn’t even properly treat Mary’s bloody nose well before her diagnosis. Long story. Suffice it to say there is no way in hell she would go there (neither will the ambulance drivers). The next closest hospital is 19 miles away. We went there several times, when it was “unplanned/urgent”. The hospital next to the ALS Clinic is 29 miles away; that’s where we went for “planned” stays.

Some tips to share from my experiences:

1. Before an emergency: Contact your local Fire Department. Let them know someone at the address has ALS; educate them in advance if you need to.

2. Before an emergency: Contact the ambulance company. Have them flag your address with someone who has ALS, who may be unable to communicate, and what equipment they use.

3. ALWAYS go to the ER by ambulance. You do not want your pALS hanging out in the waiting area, exposed to who knows what, with a compromised ability to shake off even a cold. “Walk-ins” are automatically lower on the triage scale; if you come in via ambulance you will be in a treatment room immediately.

4. Arrange ahead of time with your ALS clinic; if your pALS can wait, have ambulance personnel take them to a larger hospital. Tell them it is “Physician Request”.

5. If your pALS uses a bipap/avaps/vent, send it on the ambulance with them. Have them plug it in to the ambulance outlet so they are actively using it when they arrive. It will make it harder for the ER personnel to think “oh they don’t need it, it’s just a cpap” if they are already on it. They may, for liability reasons, want to switch your pALS to the hospital’s equipment. That’s fine; they can get the settings right much more quickly with the home equipment there.

6. If there is any chance your pALS could be admitted, take your Cough Assist with you. Small town hospitals may not have one; larger hospitals may take days to track theirs down. Same goes for feeding tube supplies and formula.

7. Always have an updated medication list; while waiting for the ambulance, note the date, time and dosage of the last time they received each meds. Send it with them on the ambulance, along with a list of any allergies. Don’t trust that the hospital will have them on file just because you’ve sent them before. Take copies of these with YOU: POLST, Five Wishes, Living Will, Medical Power of Attorney, DNR, etc. I always had the originals and copies so the originals never left my hands.

8. If your pALS has trouble communicating, take any communication equipment with you to the hospital.

9. Don’t be afraid to challenge the ER personnel about what your pALS needs. Ask if they are familiar with ALS. Ask if they have a neurologist, pulmonologist, respiratory therapist available. Give them the numbers of your pALS’ doctors and suggest they call for a consult.

10. If you don’t get what you need, if you are being brushed off, ask to speak to the Patient Advocate or Quality Management team. Often this is enough to get them moving.

Call on your ALS Community – other CALS, widows, family members. Let them know what support you need. There are a lot of experienced folks around. But also remember every pALS is different, every pALS has a different medical history; what is right for one person is not the best choice for another. Trust your gut.

By bansagart, ago