On a typical Sunday in spring 2015, kids playing after their afternoon nap, everything at home as normal as every other weekend until my husband says he is not well. I advised him to take Tylenol and rest for sometime or jog on treadmill. He said it is something major in the head and will know only after visiting doctor. I still did not pay much attention except for saying he should see doctor next day. But the fear started as the night dawned, i silently cried and prayed to god that it be just migraine. We woke up Monday and rushed to work as usual and Venkat says doctor recommends CT scan. A week passes by only to learn that he had brain tumor. Venkat said life took a U-turn and for me head was just spinning. We are fortunate to have doctor in the family to guide us through ABCs of the tumor treatment. We dropped kids at my sis place who lives close by telling them this is long office trip for both mom and dad.2 week of hospital stay became 2 months – we were as naive as babies to think everything is going to be fine 2 weeks after surgery per doctors predictions. I pinched myself really sharp as soon as he came out of sugary room to realize it is not a bad dream but reality that i need to focus on and get him back to normal. I had no clue all that night why so many doctors and nurses were on their toes to balance his sodium, sugar, etc. All i knew is to relay messages to my cousin doctor and get live feedback and prayed all night that he will be ok next morning. 3 days pass by and Venkat starts walking and talking a bit when surgeon transfers him out of ICU and estimated he would go back home in few days. It is 4th night when bit of talking stops completely – when doctors rush to get his scans multiple times to figure he had bleeding on skull and needs immediate surgery. Surgery completes and doctor says he will be alright. 2 weeks pass by, Venkat still doesn’t have appetite, doesn’t wake up much and doctors think he lost speech with brain surgery. I talked to residents to learn which medical books , sites they use for studying and followed those materials day and night to see if i can be of any help to get him back to normal. We move to rehab for speech and physical therapy – i am still not convinced that he lost his speech, i call surgeon and ask him if it was just to do with medication or truly lost the speech(in medical terms it is aphasia). Psychiatrist, Surgeon, Physiatrist all said it is loss of speech that he needs to work through developing new channels. Every time i spoke to Deepti, numerous thoughts ran at million miles/sec – what do i say to kids if i take Venkat home? will i ever be able to take him home?
Few more weeks pass by in rehab – no significant improvement in speech and physical strengths but the seizures recur when i literally fought at Loyola to have Neurologist, Surgeon and Endocrinologist see Venkat in person and all talk to each other before they decide on medication. It was 4th time taking him back to ICU. I made all three of them listen to the 6 weeks of post surgery experience for venkat, when finally neurologist thought he should reduce medication to half. Next day was a miracle to all of us when Venkat picks up phone and talks to Deepti with almost no mistake. we were discharged from rehab after two more weeks of watching him and its been ~4 months now, venkat is back home recovering to pre-surgery activities. He started working this week which is BIGGEST achievement for all of us in life. I am not a blog writer but i feel i should share my experience with at least my near and dear for various reasons.
Firstly, without family and friends support , we could not have made through this phase of life, needless to say that our near and dear were impacted although we tried sealing from many. Both of our parents and sisters and our friends who took turns and flew in every weekend to spend time with us.
Secondly, My Oncologist cousin , who was on call doctor for 2 months for us is a god given gift
Thirdly, we both did so much study about surgery, care and long term prognosis but what we missed and now i strongly believe one needs to know what to watch for during immediate care after surgery. Remember hospital is just another corporation and care is as good as the individual’s values. Shifts change, people forget things, doctors rely on residents and nurses to take care while they oversee the whole case. We as patient family should know what we are getting into and keep a tap on them to enhance the care as much as possible.
Fourthly, giving the feedback live has helped alteast 5th or 6th time betterment on service
Fifthly, Although we had #1 surgeon and neurologist in illinois taking care of venkat , <5% probability of un anticipated things have occurred to him post surgery along with wrong diagnosis of aphasia , over dosage of medication and lack of coordination among doctors.
Lastly, i pray no one gets this kind of surprise in life but if they do, be strong and remember to know everything about the situation to the extent one can instead of relying on doctors as experts (i have great respect for doctors but they are human beings and bound to their business models). All these months, i have take 4 vacation days in total and took flex schedule at work to keep my mind diversified to make rationale decisions for venkat’s health. uptodate.com and medispace.com are two great medical sites to bookmark.
We are happy to be home with kids!!