A Cultured Life…

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

Day 221, d107

on November 21, 2021

Lets call this my home chronicles. And I hope the gaps in my writing do not become a habit🙄 We have been home 10 days and it has been an adjustment. Swati wanted to reclaim her room on the very first night and i dd jot want to stand in her way. Though she does not know that I had my alarm set for every hour so i could check on her.

We went back to St Davids that friday and saw Dr Ramakrishnan. Absolute joy to see him and the nurses at the clinic. After the vastness of MD Anderson, StDavids feels like a toy village 😃everyone knows Swati and her parents. The pace, the vibes😇😇
we handed the papers from Dr Shpall and he said this was the smallest he had seen for a transplant! uUally there a reams and reams of notes, but Swati was a textbook case. I winced inwardly- if this was simple, God help the others and I have much to be thankful for.

There are a couple of immediate big questions- her CVC Line, the plans for NY, labs, the flushes. We decided to retain the CVC for another month. It seems that labs will follow a regular schedule into the foreseeable future. So back to the port maybe? I know that Dr. Shpall was ready to remove this for fear of infection if left in too long. Lets see where this takes us.

We had the next appointment yesterday for Swati’s dressing change and her WBC were a a tad lower than the previous reading. She is ’only’ at 106 days and this fluctuation is expected. She also had a bout of nausea and throwing up the previous night, now that the steroids have run their course. This is expected too and the doctors don’t seem concerned.

Survivorship

On our last day in Houston, we had a bunch of appointments. One of them was the survivorship consult. The period after transplant is wrought with change and adjustment and acceptance of changed circumstances. How do I explain this? Survivorship is an encyclopedia, with its own language and syntax. We spent 90 minutes with a chatty nurse on the road ahead for Swati. She had powerpoint slides printed out – covering food, exercise, every day care, GVH, when Swati should go to the emergency, sexuality, self care – not a little bit overwhelming. There is also a large community of transplant-ees (??) and I think it would do good for Swati to find a community to her liking. I am sure i will have more to say on this.

Vaccine – Finally!!!

This Wednesday Swati got her first Covid-19 💉 – yaaay!!! Eight months late perhaps but finally one regular thing in her life 😇 That night, I laid out some quilts on the floor next to her bed and slept in her room 😅🙈I am grateful that her side effects of the vaccine were minimal.

Thanksgiving time🙏🏽

Aditi arrived from LA this weekend. I am so happy to have both girls home. Next week I am looking forward to having Tanya, Adhiraj and Ansh with us. We will celebrate a very special homecoming.

I stepped away to flush Swati’s CVC. During the St. Davids appointment, the nurse was ready to the heparin flush to keep the lines flowing. This would have meant that we need not do the daily flushes. But. Dr. R did not want to mess with Dr. Shpall’s protocols, and so we are still flushing every day. Reminds me i must complete my article about the CVC line. I am inches away from her heart as I push saline into her everyday. Still makes me 😨🥺


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