My mom now has a tracheostomy tube linked to continous oxygen

For the past few months, my mom have shown signs of decline in her lung function. Her oxygen levels, when tested with a oxymeter both at home and hospital had been low, like real low below 90.

We have been bringing her to hospital frequently due to worsening wheezing and continous sounds from her. Each time, the doctor would order an Xray and if it is clear, we would be sent home. If she had an infection, doctor would either opt to hospitalize her or send us home with oral antibiotics. In September, she was on antibiotics for almost a month – 2 weeks in, the doctor discovered from tests that she had caught a superbug (suspected during her last stay in hospital due to Covid).

There was one Thursday when I brought her in and her chest Xray was clear. Then she had a NG tube change and she must have struggled during the change by the nurses and in the process some fluid from her stomach aspirated in her lungs (because during phlegm suction I found similar fluid with her stomach contents). I took her in on Saturday and again we were sent home as her chest xray was clear. But mom was not looking well.

By the following week, she shown more and more difficulty in breathing. Usually she was able to cough out her phlegm in which I would do oral suctioning using the phlegm suction machine. But she started getting weak and not able to cough out much. Her oxygen levels were low, like below 80 (for a few days) and she was having cold sweats on her forehead. Even though I connected oxygen via the nose cannula (we have a 5 liter oxygen concentrator machine), it failed to bring her oxygen levels up. On the following Thursday, she was really showing signs that she had difficulty breathing.

We rushed her to ER on Thursday evening (instead of going to outpatient). Immediately my mom was wheeled into a room where they tried to give her oxygen and took Xray. The doctor told me that my mom had pneunomia (with her left lung collasped) and did not think my mom was going to make it the night.

I was shocked as I told the doctor I just came in Saturday before and her lungs Xray were clear. He said this does happen as onset of pneunomia can come very fast.

He said there were 2 options. Either:

1. Go to ICU where they would intubate her, ie place her on a ventilator
The ventilator would help her breath but after that she would need to do a tracheostomy or else there is no point of getting her to ICU.

2. Let nature takes its course
Meaning to let her go gradually as her body is showing signs of shutting down due to low oxygen levels. They would use morphine to try to sedate and keep her comfortable

Even though the ER doctor offered me 2 treatment options, he was leaning heavily into option 2, ie to let nature takes its course. Meanwhile, the nurses were trying to give her oxygen via a face mask but she was still struggling to breathe.

I wanted to have my mom sent to ICU to be placed on a ventilator- the doctor was not happy about that decision. He asked me a few times, do I really want to increase her suffering? Why not I just let her go?

My teacher was with me during that time- she said one thing which I totally agree….. if my mom’s time is really up, let her go with oxygen instead of struggling to breathe. My mom was literally gasping for breath, exactly how a fish gasped and struggled for breath when taken out of the water. It was really painful to watch and recently we know of an old lady who also had lung problem and was gasping and suffering for about 10 days before she finally passed. Dying due to not able to breathe is a very scary condition and I do not wish my mom to go through that.

The doctor was not happy with my decision as he did not think my mom was going to make it given her vitals were so bad. But my mom had a history of being on low oxygen for long time and yet still survive.

Being in ICU also meant that I was not allowed to go and visit her or go in as due to Covid precaution, they do not want to risk any family members infecting the patients who are already on critical condition.

But I will always remember the moment they inserted the huge breathing tube through her mouth and use a ventilator to help her breathe…… she looked so much better, no longer struggling. Which made me realize I’ve made the correct decision.

About 3 days in, the ICU called me to go over. I was scared because the nurse had refused to tell me what it is about over the phone. When I arrived, the ICU doctor told me the option of tracheostomy. She said from my mom past records, she could see my mom always came to hospital due to phlegm and lung infection. She said having a tracheostomy done will solve that issue and if we do not do it, my mom would continue the cycle of coming to ER, ICU and possibly not making it as her condition would keep getting worse.

She said my mom was doing better than other ICU patients and they really wanted to move her to the semi ICU ward and look into weaning her off the ventilator after doing the tracheostomy.

The doctors and nurses in ICU have different view compared to doctors in outpatient or ER. They did not say with a trach it would increase my mom’s suffering, in fact they say it is the best solution to help her with her phlegm issue. I asked the doctor if my mom would be placed under GA during the operation as I have a concern that due to her low oxygen levels, she may not wake up from the anesthesia. The doctor assured me they would evaluate her condition before doing the operation.

Two days later, the nurse told me my mom has been scheduled for the tracheostomy at 6pm and after the operation, they would monitor her in ICU for at least a day before transferring her to semi ICU unit. The next day, the nurse called me again at about 8pm to tell me that my mom would be moved to the common ward instead of the semi ICU unit. They are going to send her down that night itself to the common ward.

Reason being that they were able to weane her off the ventilator and now she was doing okay breathing on her own with oxygen administered via the trach tube (via a trachea mask).  But that also mean that a caregiver is required to accompany the patient.  I told the nurse if I could try to get a nights sleep and then come in the next morning, she said no issue as she would ask the nurses to look after my mom.

The next day, I packed my bags and went over to the hospital to see my mom. Before I was allowed to go in, the hospital require me to have an ATK test which I took directly from the hospital.

I was by my mom’s bed and was talking to a nurse. My mom seemed to recognize my voice and opened her eyes. By then, I had not seen my mom for about a week. I held her hand and she grabbed at it tightly, signalling to me don’t leave her. Even though my mom have end stage Alzheimer and no longer recognize me as her daughter, she recognize me as someone who cared for her.

The ward attending doctor told me that as my mom’s antibiotics (via IV) would be finishing the next day, she can be discharged the next day. I looked at my mom, seeing swelling on her hands and legs, mom did not look fit enough to be discharged. Furthermore, I have no idea how to care for someone with a trach tube.

Also the nurses told me that my mom would need to be continous oxygen 24/7. We have two oxygen concentator machine of 5 liters and the nurses told me it would not be enough. She would need a 10 liter machine which we would need to arrange and purchase.

I have been in the hospital long enough to know that in the common ward (a non air conditioned area with lots of beds), they need to discharge patients ASAP as soon as they are not critical because they need to clear the beds for other patients. This has been my mom’s 4th stay in the ward and I’ve seen how doctors would discharge non critical patients. After a doctor’s rounds, a lot of beds would be cleared only to be filled up again by evening or the next morning. So I asked to be transferred to private room where I would need to pay so that my mom could stay longer and get stabilized.

We ended up staying in the hospital for another 2 weeks in the single room private wing. The first few days, the nurses concentrated on doing a lot of suction for her, including using an ambu bag with NSS drips to her tracheo tube to suction out sticky phlegm. During that time, the nurses showed and taught me how to do phlegm suction via the trach tube and to do wound dressing daily for my mom. Initially I was so scared but with time. I learned to do these tasks myself and asked the nurses questions over anything I was not sure about. As it was a private wing where all including locals need to pay for the room, the nurses on duty there were almost all very experienced and knowledgable. They also have more patience to teach, unlike in common ward where the few nurses had to tend for many patients.

The system the hospital uses is that the same doctor who saw us at the common ward would be the one assigned to us when we move to the private wing. I asked not to be discharged because we need time to get the oxygen equipment ready and I also needed to learn the skills to care for my mom who now have a trach tube.

Initially the doctor was not too keen as she was concerned about my mom catching the superbug from extended hospital stays. But then, the rate that my mom seemed to be recovering amazes all of us including the doctor. Every 3 days, the doctor ordered an Xray and blood tests and she could see improvement in my mom’s condition as well as her lung sounds. She also got a senior physical therapist who came in try to do physio to get the fluid at the back of the lungs to come out. The physiotherapist told me that for patients with pneumonia, they tend to have fluid stuck at the back of their lungs so he used his palm to beat the back, then listened and beat again, First day, there was nothing much but on the second and third day, we were able to suction out a lot of phlegm, like every 2 hours my mom would have a lot of phlegm.

Her lung sound continue to improve. And her oxygen readings have begun to stablize after more than a week. Her hands and feet were no longer ice cold but instead started to get warm.

And what amazes me is the change I saw in her face. She looked so much more relaxed, no longer in distress or struggling to breathe. Just as the ICU nurse and doctor had assured me, it was really much more easier to suction out phlegm from her lungs through the trach tube than through her mouth. Because the suction tube cannot reach deep enough with oral suctioning…. and if the person has a lot of phlegm, they would be very surceptible to pneunomia and lung infection because of accumulation of the phlegm in the lungs.

To supply continous oxygen to my mom, we bought an additional two 10 liter oxygen concentrator machines. And we also have an oxygen tank in case of electricty disruption which sometimes can happen. The machines are rotated every few hours because according to the staff, the machine needs to be shut down every 8 hours.

I regretted not doing the tracheostomy for my mom earlier. Had I done it earlier, it would help with suctioning which can prevent her lungs from weakening to such an extend that she also need to survive with assisted oxygen. That means going forward, my mom would need to be transported to hospital or anywhere using an ambulance as she would require oxygen.

When we made the decision to send her to ICU, her condition was already critical. Despite all odds, she was able to make it and her body show signs of quick recovery. From this, I was able to see that she wanted to live and not die. If she had not wanted to live, she would not respond well to treatment. As her daughter, I would continue to honor her wish and care for her for as long as possible.

Seeing her face at ease had made a tremedous impact of my emotional health. I felt a huge, huge relief, happier and was able to sleep better seeing my mom being comfortable. Before that, she was wheezing very often and her face looked like she was in hardship but doctors had told me it is common with bedridden patients as they are surceptible to fluid buildup in lungs and pneumonia.

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