A Cultured Life…

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

Day 139, d25

Not yet official

Swati was nauseous all day yesterday. This was hard. None of the medications helped and she was in bed, fighting through this. For dinner, she wanted to do something different. Her first choice was tacos. But due to the presence of raw vegetables, I thought a Pizza would be more suitable since it would be fully cooked.

This meal was a proper DISASTER

The Dominos pizza was super late – delivered 90 mins after order, and stone cold, defeating my purpose. I microwaved the pizza but was pretty flat to taste. Swati was upset because she could not taste the pizza. I am a 100% sure that it was pizza that let her down and not her taste buds. So very tired of hospital food and the monotony of the boxed dinners from home, although home cooked.

For distraction, Ansh bought painting supplies a few days ago. Swati and he painted yesterday – view from our window, cityscapes. That took her mind of things a bit.

As I write this, we are waiting for rounds. For the doctors to sign off on discharge.

***8:15pm cst****

Still on track for discharge tomorrow. The nausea has not let up and we will start a new medication tonight. Hopefully she can sleep through it.

I don’t want to jinx this so I will start packing ONLY after rounds tomorrow.

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Day 138, d24

It’s official!!!

*****Engraftment milestone reached*****

Swati’s cord blood stem cells received on August 5th are making new blood cells in her bone marrow!! Her White blood cells are steadily increasing – 1.8 today, another important marker. Engraftment is also validated by an Absolute Neutrophil Count (ANC) of over 500 for three consecutive days. Today was Day #3 for Swati.

The absolute neutrophil count (ANC) is an estimate of the body’s ability to fight infections, especially bacterial infections. The ANC count measures the number of neutrophils in the blood, a type of white blood cell that kills bacteria.

Engraftment means the new cells are working properly and starting to rebuild Swati’s immune system. White blood cells are the first cells to engraft, followed by red blood cells and platelets. The same order in which they went down.

Her platelets are down again to 8 so Swati is getting a single donor platelet transfusion. This is one marked change from before when she would get a Pooled Platelet transfusion. I am not entirely sure how this tracks, documenting for Swati to read for later.
Swati continues to demonstrate all the correct markers at this stage of the transplant process and we are on track for a Tuesday discharge. WOOHOO!!!!!

I am not capable of emoting my feelings. Still in the ‘Do’ mod- now thinking of how to pack for our trip out of this room. The lists are flying out, fast and furious. Actually the more important lists are the discharge lists – of meds, of to-dos, how-tos and such. So I need a List of all Lists 👀😇

I sent a text to our doctor in Austin – Swati is so loved. Of course, he stays updated on her chart. He texted back

“Platelets will take awhile but good news on neutrophils! Everyone here was asking me about Swathi yesterday and we saw her labs…all the nurses and staff were excited and wanted to pass on their best wishes for a speedy recovery!!

To those reading this- Thanks for all your prayers, your support, your love – we are blessed.

♥️

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Day 137, d23

We have a discharge date!!! Monday 8/30 or Tuesday 8/31

I have no words – I do but they are tumbling out too fast♥️ will write again

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Day 136, d 22

Another restless night….

Swati did not get any sleep last night. She was so restless, scratching away like crazy and they would not give her anything! Steroids suppress the engraftment process and unless there is clinical indication of hives or such, they will not prescribe.

Recommended lotion and I slathered it all over. My hands are cold and she had THE most uncomfortable time. I have no idea when and if we slept- the life saving interruptions continued.

Her WBC counts are 1.3 – 🥳 yippeee! But her platelets are at a dangerous low of 2. Running labs to see what is going on. Today especially, need to be watchful for nose bleeds, headaches, bumps and such.

******Update 10:44pm CST******

They say things turn on a dime. This is true.

Swati is off all of her IV meds except for the IV saline!!! 😇♥️💙😇♥️💙😇♥️💙😇♥️💙
They have all been converted to pills!!!!
Tacrolimus was the last one taken out and Swati cried. I cannot even imagine what must have gone through her mind all this time. Today was a big, big day. Discharge is no longer a date far out into the future. We can smell it the way you can smell rain in the air.

The IV pole has more bandanas than IV tubing. Such a beautiful sight 🥰

Today was a stressful day, I will write more tomorrow. Tonight i want to curl in my pull out bed and give thanks to the universe for seeing us thus far.


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Day 134, d20

Aaarrrgh@@&&$(;:/—

Our room has been busier than a fish market this morning! Don’t even know how Swati feels but I was totally stressed out. As I fly things getting quieter, I lay down and closed my eyes 👁

The morning began at 530am CST with the daily blood draw and the Tacrominus level check. The first is through her CVC and the second is through the vein. NOT the best time – but oh well.

Bright and early, the nausea kicked in. She got one at 630 am. I came out of the shower and she was reaching for the call button. The nausea had not subsided so …..

*****12:02 update****

Swati’s WBC COUNTS ARE 0.8!!!! On track for 8/31 discharge as long as the platelets hold.

Coincidentally, Swati’s surprise has also been delivered today. I will say more about this after Swati has seen it 😉

*****8:50pm cst******

What a day! What a day! I will allow myself the tiniest bit of happiness. The nurses are super happy about Swati’s progress. Her body is responding as it should and in very good time – just shy of three weeks. We have miles to go but we are seeing success and that is enough to carry me ahead.

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Day 133, d19

A restless night…

..I wish I knew why 😶

Swat was not able to settle down into sleep last night. Ansh was here the evening (Ansh and dad are going to alternate the evening visits ♥️😇) and we decided to have dinner from the cafeteria. She began to sense the oncoming of nausea a little before 9pm and decided to take the nausea medication. I also sensed a sadness bubbling up in her. This is usually brought on by the overwhelming exhaustion she feels. Tired in all ways.

I am not expert but we talked through it the best I could. encouraging her to look beyond the here and now, the larger picture. Telling her there are so many people supporting her and praying for her recovery – but this is too much to expect of a little girl 😰

channeling all my energy, my love 💙

Swati has slept through the nurse visits this morning I-am loathe to wake her up.

Her WBC count this morning is 0.6, up from 0.3 yesterday. Will be watching this closely.

In other news, my mom is back from New Jersey where she spent time with my brother. happy she is here 😇. Such a support for Srinivas and of course she is more than happy to take over the kitchen.

Oh I must confess – yesterday I went down to the 2nd floor of MD Anderson. Wow another world! A Starbucks!! A museum!! Shopping!! And I got a very touristy picture with a mannequin in a glitzy spacesuit.

This was more a recce- I want to go back with Swati. But I laughed for the first time in a long time 😅 I was taking a selfie with the mannequin and an employee insisted that he would take the picture for me, unmasked.

Amidst the noise of my life…..
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Day 132, D18

Monday, Aug 23, 6 am cst

This hit me that last few days. Friday’s incident with the IV shook me up more than I let on. I took a serious nap on Saturday afternoon, while Swati was on the chair, solving the Spelling Bee in the New York Times.

Swati received platelets on Saturday and towards the end, she began itching. The nurse insisted that that she should get something even though the doctor wanted to wait and see. A dose of hydrocortisone eased the itching. The results from the CT came and it appears there is a small patch of pneumonia which they are watching. Strong possibility that this is an old from 10 days ago and was the reason for her fevers. Swati was referred to an Infectious disease specialist. He recommended getting her back on Vancomycin (of the VRE-fame) in addition to the broad spectrum cocktail that she is already getting. She is also coughing more and Robitussin appears to be helping when the spasm hits.

If you recall, we started down this road because she was unable to get the spirometer as high as she used to. I continue to be thankful to my intuition, maybe just “mom-knows”

Am I mixing up my days?🤔😢

Seems so because the chronology is off.

The NEXT day saw swati in bed all morning except for a walk inn the morning. Another round of platelets. No reactions this time – Hurray

I will be honest though. She has cried more than a couple of times in the past three days. She is all round tired. Trying to make her see the end game (for now) through the haze of nurses and meds and IVs and labs – and I don’t know how she does it.

I am so proud of her. In awe of her determination her perseverance her tenacity. Her ability to push yourself. The same work ethic I admired I now see it on full display. Albeit this is the work of life. 💕💙💜

🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫🧫

Yesterday (Sunday for me) her WBC counts were at 0.3
We are all keeping a eye on it. They have been wildly see-sawing between 0 and 0.1
Should I be excited? Cautiously optimistic I want to say.

****UPDATE 10:47 am CST ****

During rounds, on of the PG Fellows on the care team said we should not push Swati to eat. Since yesterday, the food aspect has been stressing out Swati. Boost nutritional supplement come up 3 times a day, then the nurse wants to scan with constant q of if we have eaten and then last night the nurse talked of protein as building blocks😞 makes us feel a failure.

Swati tries; more than anyone at this point. I am happy they can see that. yoghurt cottage cheese, protein flakes supplemented along with dal and rice from home.

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Day 129, D15

What a day!!

The day began ordinarily, still waiting for the CT scan. With the food restriction in mind, Swati had Boost and since the tiredness continued, she was in bed, mostly. By 7 am her morning labs came back with a platelet count of 3 and we pretty much knew that she would get Platelets today. Of course things being as they are, the nurses told us it would be more likely noon by the time the platelets got to the floor. Once it got to the floor, they would premedicate with Benadryl. If you recollect, we are not entirely certain about the origin of the shivering which manifested during the platelets transfusion.

I was worried about how we would manage the Benadryl, the platelets, the CT all al the same time because Swati would go to sleep after Benadryl. They said the platelets would take first preference and if the CT call came, then we would tell them of the platelet timelines.

1130am CST

The platelets are here and the nurse are in the process off verifying and hanging the bag up. They are almost done and the doctors enter the room on rounds. The first words out of the Attending’s mouth are “your intake was very low yesterday.”

Of course!! She has not eaten anything because we were told “NPO” – nil per os, Latin meaning Nothing by Mouth
The next question they are asking themselves is why a chest scan should be NPO. Swati was upset speechless already and I told we have been waiting almost 24 hours for the scan and the IV line for contrast was put in last night…..

I was interrupted mid-sentence and they ask me why contrast. Incredulous, I said you tell me. By now, my Mama Bear instincts were out in full force and it was clear that something was very wrong. A simple mistake but the waiting and the unnecessary needle poke and the IV and the tears last night – I was on a war path. Swati cried tears of frustration. I was angry. I had ordered lunch but Swati only managed a banana. My goal was to get the IV out of her arm.

The attending was very apologetic, said they would investigate where the miscommunication happened, etc. The Physician Assistant told us that he would put in a stat order for the CT. The doctors left and I kept reminding the nurses about the IV. The nurse went out to check if the IV could be removed (for what ever reason).

The Physician Assistant came into the room to tell us that it was his fault. Inadvertently he coded this as “with contrast and that kicked in the NPO order. He asked if we requested a change in time and that got my hackles up. I said we asked for last possible time when they might call us for a CT. Midnight? 2am?

He left the room and soon enough the transporters were at the door to take her to Radiology. However, no one is addressing the IV. The nurse tried to tell me that it could be removed after the CT, the transporters are already here, the CT team is waiting and such

I put my foot down.

I said we have had an unnecessary IV for 18 hours and it would not stay in a minute longer.

She removed the IV and covered up with a band-aid. Then they helped Swati into a PPE and onto the gurney for transport. It was 15 minutes by the time the IV tubing was properly arranged for them to navigate. Swati pointed out her arm and the PPE gown was lightly stained pink (PPE is liquid-proof, unless torn). The nurse realized it was blood and immediate held on to her arm. We did not look inside. Swati was digging her fingers, tearing a hole in the sleeve and the blood was seeping out of her jacket. The nurse was asking any one passing by for the crepe bandage and the one passing by took some time to understand what was needed. She was calmly explaining was was needed, all the while pressing a wad off gauze on Swati’s hand to stem the flow.

What a perfect storm!!

Swati’s platelets are low, she is getting platelets and her clotting function is delayed.

Finally another nurse came with the bandage and she wrapped Swati up. All of us – our two nurses, one transporter trainer, two trainees, myself and Swati trudged down the hallway to Radiology on the 3rd floor.

The scan itself took under an hour and we we were back in the room by 315pm. I gave Swati and apple juice and yoghurt and convinced her to rest an hour or so. Because the evening promised a silver lining to the day.

Swati’s boyfriend Ansh came back from his trip home, presented the negative Covid test, and was coming to see her. With Dinner!!!

It is now 10pm and we are settled in for a quiet night.

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Day 128, D14

Waiting & Waiting

..for a CT Scan!

The doctors at rounds said X-ray from yesterday showed a tiny patch which could be a ‘forming’ Pneumonia. Wile this is all expected and within acceptable ranges, they want a CT scan to look at the patch closely. We were scheduled for 2 pm and with no solids after 11am. It is now 9:45pm and no CT yet

At 430pm we were frustrated and ordered some soup and a grilled cheese because we could wait no longer. Our day nurses talked of moving this to tomorrow perhaps.

Swati has been tired all day and at &:30pm, just as she was about to go to bed after a shower, the phlebotomist came by to put an IV in her arm for a contrast CT. She was LIVID. They could not tell us when, or how late. They are known to call patients at midnight and 2 am for their CT🥺

Rather than go through the same tomorrow, she reluctantly agreed to the IV. She wept😢- just a combination of all things. Another stick in her arm, black and blue – Pains me and I try to not think.

I am sitting up, hoping they might come anytime now. But i have a feeling that it might not happen until late. So perhaps i should call it quits at 11pm🤔 and get on tomorrow’s schedule?

****Update 8/20 @ 7:20am****

No CT yet😶

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Day 127, D13

Swati is having one of her better days 🙂 Pain level is 2/10, not pushing the PCA pump as much. Her energy is coming back – making plans to play Switch with friends, watch movies with friends. I am really happy.

Today was an experiment of sorts for me – my first day working at the hospital. Once I finished my 8 am stand up meeting, the morning just ran away from me. I was okay with the listen only meetings, except for a few interruptions during rounds, or nurse visits for meds. I am incredibly grateful to my team for supporting me through this. Of course no two days will be the same, so will see what happens tomorrow 😬

One of Swati’s prescribed exercises is to breathe into the incentive spirometer. This Spirometer measures how much air you can breathe in and out of your lungs, as well as how easily and fast you can the blow the air out of your lungs. The exercises train the lungs to take slow deep breaths and to increase lung capacity. In talking to Swati, I thought the ball (in the spirometer) was not going as high as it used to a few weeks ago. I mentioned this at rounds and the doctor prescribed a chest X-ray. Swati pointed out some swelling in her feet, which doctors think is due to all the fluids she is getting. The IV fluids have been further reduced from yesterday’s levels.

The just confirms that we need to be our most passionate advocates. We need to, should talk of everything that we feel or that happens to us. The doctors pay attention to all we say and typically act on what we tell them. I may be in the hospital for a prescribed treatment, but how the treatment progresses is entirely in our hands. This is a huge responsibility, one that Swati is grasping, slowly, but surely, day by day.

I have been meaning to talk about something for the past three days –
Remember Michael who we took Chinese take out last week? He gifted Aditi and me with a caregiver meditation pack, as a thank you gesture. I have been experiencing this guided meditation track every night before bed and it is amazing. Very calming and grounding and I can feel the latent stress of the day melt away. Michael and Les have a discharge date and we are so excited for the rest of their journey outside the hospital.

Today, Swati received a card in the mail, addressed to her hospital room from Michael and Les. Swati cried as she opened the card, I cried as well – tears of joy this at having found family and humanity in the face of such a dreadful reality. I will leave you with these emotions.

Les & Michael’s card to Swati

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