A Cultured Life…

…stumbling through life with two beautiful daughters – often tripping, sometimes running!!

Day 122, T8

…Never a dull moment…more stress

1.30pm CST

Visitation hours have been reduced to 5-8pm and also the number of people on the visitor roster, from 5 to 3. I was happy to see swati after three days and while I did not EXPECT anything, I most certainly did not expect the hungama that I was witness to.

Yesterday, Srinivas and I picked up a Chinese takeout dinner for Aditi and another caregiver a few doors down from us. For Swati, I made puréed Rasam rice and curd rice.

I donned the PPE outside the room and could not wait to give Swati a hug while for Aditi tied the gown at the back. As soon as I hugged Swati, I could feel her shaking under me. For a second I thought she was overcome by emotion, but quickly realized that she was shivering. I asked Swati if she was shaking and she said yes through chattering teeth 🥶 Aditi said she was fine 10 mins ago at vitals. Asked her to ring the call button and an announcement blares out “your care team has been notified”. Appears this is a new bed. Along with all the other things that transpired in the four days that I was not at the hospital.

The nurse came in for vitals and she could not record Swati’s blood pressure – she was shaking so much. Swati had begun getting platelets an hour ago, having gotten a unit of blood earlier in the day. The nurse immediately pulled the covers off of her and called the blood bank unit. Her heart rate monitor (hooked up along with the pain pump is going off since Swati’s heart rate is going up. Very quickly, two nurse from the blood unit come into the room and begin their investigation. At the same time, Swati;s Tacrolimus infusion is complete and that pump starts beeping.

All these sounds are enough for anyone’s blood pressure to shoot up😰

The nurse pulls hangs up another Tacrolimus.

Swati has not had a reaction to transfusions earlier –
– Itching
– shortness of breath
– chest pain
While all these were ruled out, the decide to stop the platelet transfusion. The other nurse is drawing bottles of blood. Yes – bottles! Sized like your mini bar offerings. this blood will be cultured to see if her shivering was a reaction to the platelets or something else.

This could be an infection too since she has been fevering over the past two days.

Amidst all this, Swati is telling me all that has been happening, from nurses, to sitz bath escapades, to the morphine. And the pain. Last evening it was a 4/10

Her central line dressing change was due Wednesday and slipped the cracks. The day nurse could not do this because she was waiting for a go ahead from the blood back. Not wanting to introduce new infection.

6.45pm

time for shift change. Aditi decided to go and eat because there were too many people in the room. Though i am certain she could not enjoy the food.

By 7.15pm things quieted down somewhat and we got ready for the planned shower. Covering the central line, dragging the IV pole to as close to the shower curtain as possible. I clip the tubes to the basket so it does not tug and her hands are free.

By now Srinivas is circling around, waiting for me. remember this was to be a quiet visit. I tell him that i will be some time, waiting for swati to finish. When she comes out and sits, i towel her face dry with one of the soft towels from home and she leans into me. I hold her close, a million thoughts in my head but no words in my mouth.

By the time she is dressed and sitting in the chair, it is 7:55pm and I need to leave quickly

Quick note on the meal

Michael is another caregiver on our floor. We have been running into each other on our way to and from the refrigerator. We finally exchanged a few words on my last morning there. How overwhelming, how many unknowns, and how unprepared we are finally. We exchanged phone numbers and i said i would give his number to Aditi, so she could reach out to him if needed.

After coming home, I texted him to ask if they had anyone on the outside, in Houston. They are from San Diego and do not know anybody here. Aditi and he have met and Aditi said it has been some time since they had a hot meal. I decided I was taking him some food.

During these very dark days, my main emotion is gratitude.
– That we have a semblance of home
– That we are able to cook and take food for swati and the caregiver
– That we have people who will come to Houston to cook for us

And n number of reasons…

I had to take him something. I hope his evening was a bit brightened in an otherwise colorless day.

Thanks for reading!!

Anu

*******Update 5:45pm CST******

Swati had a much better day today, The pain is manageable at a3-4/10 and no fever spikes. Unfortunately, the evening vitals read 100.3 – i hope it recedes and she is able to rest tonight. Of course they will still come in every hour for vitals…..

Srinivas took dinner for her – puréed Rasam and rice and yoghurt and rice. Hopefully Swati managed to eat a bit. She tried Mac and cheese for lunch and it was difficult to swallow.

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Day 105, T -9

Treatment plan initiated 👼

A fitful nights sleep for the two of us. Swati and I have been sleeping in two and four hour stretches waking up for vitals and blood draws at 4am. Pretty much the routine we are already used to from St. David’s Austin. I was happy she was was hungry and we had fun pondering breakfast options.

  • 830 am – time for premeds – steroids and Benadryl
  • 9:00 am – Morning meds
  • 910 am – Infusion begins!!!🙏🏾
  • Noon – Lunch
  • 2.20 pm – Infusion complete
  • 4.30 pm – Shower (Counts for two activities on the daily chart 💃
  • 530 pm – Smoothie with protein powder and chocolate chip cookie
  • 6.20 pm – Srinivas walked in with a home made dinner and a box of Georgetown cupcakes, courtesy my aunt from Bethesda ♥️
  • 6.45 pm – Electrolyte infusion based on lab reading
  • 9.00 pm – Night-time meds

This place, like any other hospital is no place to rest, presenthe of a revolving list of providers.

The Benadryl started acting in about five minutes. While Swati was trying to sleep off the Benadryl, the doctor came in, along with the Pharmacist and the Advanced Practice Nurse (APN). After the introduction, swati continued to sleep and I filled them in on the night’s and day’s activities. Interestingly, the doctor wanted to know if I was ‘medical’ because I was speaking their language 🙄😎 Between MS and the healthcare system in general, and now Leukemia, I have realized the importance of advocacy and staying on top of things.

And this began the revolving list of providers. Each of them had general questions around fatigue and mental health, as also helping identify a baseline before transplant and provide advice of their specific areas of expertise as it applies to Swati.

  • Physical therapist (Christin) – Exercising for greater flexibility and strength, avoiding falls, walking safely, adapting to physical changes
  • Nursing shift head Charge nurse (Clem): Education for all things related to Stem cell transplant, including hygiene, oral care, Central Venous Access Device (CVAD) care and education of the care giver.
    • Here is my homework! I have been instructed to watch a video on caring for her CVAD. Flushing as well as dressing change. This is definitely another article as I work through my emotions.
  • Social worker – Coping with stress and other mental health challenges
  • Occupational Therapist (Ashley) – Daily living activities such as bathing, grooming, and dressing. Also managing home and work activities.
  • Head of the Adult and Young Adolescent (AYA) clinic (Janae) – helping serving patients 15-39, in active, treatment or post survivorship, navigate the unique challenges accompanying this diagnosis

This wretched disease has an amazing network of varied support systems; Navigating these systems of help is a challenge in itself!

Today has, so far, been an uneventful day, except for a 98.2 degree fever which no one is worrying about yet. I am praying for a restful night and the same for tomorrow.

Thanks for reading y’all!

Anuradha

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