Love is All There Is

Caregiver Journal – Day 7 of the Trach Journey

Journal entry by Denise Allen — 

Here we are at Thursday again, 7 days in the hospital and counting.
It’s been busy and I haven’t had  much time to update everyone.
Physically, Mary is healing well. Psychologically, it’s a real challenge. Every time she wakes up, she has an anxiety attack. My guess is she goes to inhale through her nose and nothing happens. She tries to inhale through her mouth and nothing happens. She feels like she can’t breathe, that she isn’t getting any air, and no matter how much we assure her that she is breathing, and she is getting all the air she needs, and her pulse ox is 98-99% almost all the time, the anxiety kicks in. Last night she said this is so much harder than she expected. I’ve talked to nurses and respiratory therapists, and it turns out that we have sensory receptors in our sinuses, on our tongues, in our throats that signal that we are getting air. With those receptors bypassed by the trach, the body’s message is “no air!” She can’t feel that her lungs are expanding even though I can see it – those same receptors give us that information. It’s a matter of re-training her brain to recognize new signals for breathing. I believe that once she is on the portable ventilator and can SEE the displays, she will be able to trust it more. We’ve tried and can’t get her in the right position for her to see the screen on the full-size ventilator. Last night she asked me to put her hand to her throat so she could feel the trach and tubing, but her arm doesn’t bend that far anymore. I offered to take a picture, but she’s not quite ready for that yet.
Her fabulous home health nurse is helping make phone calls, throwing his RN weight around to try to get information and answers from people I can’t seem to get through to. We also brainstormed so other possibilities for finding caregivers when he was visiting last night. I sent him home with quite the “to do” list.
I am doing phone interviews with two potential caregivers: one tonight and one tomorrow morning. I am hoping they will both be worth an in-person interview. Both claim to have experience with trachs and vents, feeding tubes, etc. Yes, I am checking their references, and I’ve already verified the license of the one who is a CNA. If we can get at least one of them on board for some hours this weekend, it is highly possible that we can get Mary home this weekend. Which means I need to start getting trained on trach and vent care myself – cleaning the site, suctioning, changing the inner cannula. But I think being home would help her anxiety immensely, having familiar surroundings, having Mango and Rafi around, having more control over her meds, not having to wait 10 minutes (or more) between requesting meds and actually getting them.
She hasn’t yet been able to use the eye-gaze system/SGD (speech generating device) much because she’s been so groggy. It’s going to take time and focus to get used to that. So she is learning a new way to breathe and a new way to communicate at the same time; very frustrating for both of us.
In addition to her home health nurse, we also had visits yesterday from two of my co-workers. One of them brought me a care package and the other took my dirty laundry home to wash.
Early this morning, someone delivered a new neck brace that will accommodate her trach. We tried it on briefly; here’s hoping it will be comfortable enough for her to use it. None of the doctors have been by yet today, but the Respiratory Therapist has been by a couple of times and says she is doing great,
By bansagart, ago

Caregiver Journal – Adapting and Making Plans after Trach Surgery

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.

By bansagart, ago

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 – Feb 2, 2015

January went by quickly

The beginning of January was preoccupied with helping Mary recover from whiplash and a mild head injury suffered from that bad driver. She is still having neck and shoulder pain, so this morning she will be having it x-rayed before going to her appointment at the ALS Clinic in Portland.

We have also been dealing with an ongoing caregiver issues – trying to find caregivers who have the skills and the right attitude for Mary to be left safely with them. This has been an extreme challenge and we are down to two caregivers that fit this bill, one that is on their way out but doesn’t know it yet, and Denise having to stay home to supervise the ever-changing fourth caregiver. This when there should have been five or six all along.

On top of that, the agency that has been providing services for the past year has notified us that they will be terminating Mary’s contract. The reason given is that two of the caregivers have back/shoulder injuries. The owners don’t want the “liabiilty” (read worker’s comp) so they would rather bail than work with the issues – both of these caregivers had previous injuries that were exacerbated by working too many hours with Mary prior to us developing some ways to reduce the back strain on those caring for her.

We are actively looking for another agency that can provide services while trying to find ways to convince the current agency to keep Mary’s case, even if it is only for half of the hours.

By bansagart, ago

Caregiver Journal – December 9, 2014

A year ago today, Mary was diagnosed with Motor Neuron Disease/ALS. So much has changed in that year, yet Mary remains the fighter she always has been. She is still able to speak on the phone, and is able to enjoy short conversations. Typing is a chore, yet she continues to text with friends and family. We are closer to getting the Tobii EyeMobile system, which will make it much easier for her to communicate with her caregivers, friends and family. Thank you to everyone who has made a donation, and the ALS Guardian Angels who gave us a grant for a portion of the equipment.

Denise’s mom was here for a week, and just went home on Monday. It was nice to have her here. She helped to get the house decorated for the holidays, unpacked and organized some pictures to be hung, and spent time just be-ing together.

By bansagart, ago

Caregiver Journal – November 10, 2014

New Equipment

Journal entry by Denise Allen — 

After a few scares with the Bi-Pap/AVAPS machine Mary has been using since February, she received a Trilogy 100 ventilator on Friday. It has a lot more bells and whistles (settings and alarms) and internal backup batteries in case of power failures. She says it’s like going from a ’65 Bug to a Cadillac – and the ride is different. We’re still fine-tuning all the settings and alarms that her previous machine didn’t have. Soon we’ll have it just right so that she is breathing comfortably and we can have a little less worry about ventilator failures. Now to make sure all the caregivers know how it works!
The Trilogy is a ventilator because she is using it 24/7 to support her breathing. She does not have a trach; she wears a face mask similar to what is worn with a bi-pap for apnea. She’s getting a new face mask today that will hopefully be more comfortable.
Below you can see one of the neckbraces she uses to keep her head upright as well as her preferred mask for the BiPap and Trilogy. You can also see her neck without the brace while modeling her “John Lennon look”.
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