Harriet's Hedgehogs and Autism Advocacy

Greetings friends of Boo Bear. We are logging in from the 5th floor of Children’s Masonic Hospital in downtown Minneapolis. We have been here for 12 days. 12 days ago Ravi admitted to the clinic with extreme shortness of breath and exhaustion. While receiving a blood transfusion he spiked a fever of 102.5 and was promptly admitted to the hospital on IV antibiotics. For a day we were not sure where the infection was situated. Friday night it became obvious the infection was in his left arm. Emergency surgery was done early Saturday morning to wash out the hardware in his resected arm. Ravi was returned to floor 5 with 2 drains in his arm, a thick bandage, and loads of antibiotics and fluids. It became obvious that the hardware would have to be taken out and replaced. Dr. Houdek, at Mayo, was the surgeon who originally resected Ravi’s left arm. I reached out to him, as he knows Ravi and the hardware best.

Several days passed before I was able to get Dr. Houdek and Dr. Hooks, Ravi’s resident at Childrens Hospital to talk to each other. The conversation happened in the last hour. Basically, the hardware has to be taken out. This is complicated by the fact that Ravi has a healing pressure sore on the back of his left shoulder. Despite our hard work, this is how the infection got into his system in the first place. Dr Houdek is waiting for an OR to open up at Mayo. When that happens, Ravi will be transported by ambulance from Minneapolis to Rochester. Dr Houdek will reopen the arm and attempt to replace the infected hardware. His caveat is this, if he cannot do this, he will amputate Ravi’s left arm.

At the moment I feel as though we are living in a nightmare. I do not know how I can explain to Ravi if something were to happen to his arm. He has been so very brave the last 16 months. He has endured so much. My fervent hope and prayer is that the arm can be salvaged.

Clinically speaking, Ravi is doing well, as long as he is on IV antibiotics. He is eating and sleeping well. He is able to take walks in the hall without being exhausted after 20 steps. His kidneys function is respectable. What we need now is this, an OR to open up and for Dr. Houdek to perform another miracle and salvage the arm. This will be major surgery, just like his surgery of July 28, 2023.

If you are reading this, please pray, light a candle, send you best white light and energies to Ravi and to Dr. Houdek. We will keep you posted as best as we are able. In the meantime, be good humans and we will be in touch. Harriet.

Good morning, all. Ravi is still in the hospital but continues to do well. I hope I am not jinxing things by saying that he will probably be discharged in a few hours. But I want to tell you something magical that happened last night. But, first, a quick refresher on autism and it’s so called “deficits”.

“Autism- a developmental disorder with symptoms that appear within the first 3 years of life.

Deficits in social communication, and interaction.

Restricted repetitive behaviors and interactions, interests, or activities.”

Symptoms/Behaviors:

Reduced eye contact

Difference in body language

Lack of facial expression

Not engaging in imaginary play

Repeating gestures or sounds

Closely focused interests

Indifference to temperature extremes.”

Last night I was sitting on Ravi’s hospital bed, saying goodnight to him before I headed home. He was covered in a blanket, watching his beloved Sid the Science Kid, on PBS kids. I told him I was about to go home but I would return in the morning, and we would go home together. Suddenly, he popped out from under the blanket and looked me deep in the eyes. I smiled at him. He smiled back. He made a sudden move to grab at my glasses. I ducked his hand and put his own glasses on his nose. He beamed at me. His crossed eye straightened out. I wrinkled my nose at him. He wrinkled his nose at me. I smiled, he smiled. I said, “You are my best boy ever, aren’t you?” He gave me a toothy grin in return. I took his two big hands in mine and squeezed. He squeezed back. I leaned toward him. He leaned in towards me. We sat there for a long time, almost nose to nose, just looking at each other and smiling. It was almost like Ravi had read over his supposed list of autism “deficits “and said, “Here, hold my beer.” He was doing everything the naysayers had said that he would never do. He was making deep, intentional eye contact. He was mimicking my facial expressions. He was squeezing my hands. He was inviting me into his world. (Shout out to all the “professionals who said that Ravi exists in his own little world and shows no interest in engaging with others.) I really cannot describe those 15 minutes I spent with him, but they were magical. Ravi and I were in our own little orb and the rest of the world disappeared. For the longest time, we simply sat there, holding hands, looking in each other’s eyes, and mimicking each other’s facial expressions. Our eyes were locked, and our breaths were matching. Sadly, the life of the hospital interrupted this magical moment. A cart clattered by in the hall. A page came over the intercom, announcing a code 21 in the adult ER. (Code 21 is a mental health crisis). The baby in the next room let out a lusty cry. The moment was gone. Ravi squeezed my hand one more time and then slipped back under his blanket fort. I kissed the top of his head and vanished into the night.

As she often does, my muse woke me up early today. Ravi’s deep blue eyes and smile were the first thing I thought of when I regained consciousness. The word “liminal” was running through my head. I thought of all the “professionals” over the past 20 years who listed all the things that Ravi would never be able to do. Then I thought of and gave thanks for all the believers in Ravi, those who knew he would do amazing things in his own time. I looked up the word liminal. Wikipedia describes liminal space as this: “the uncertain transition between where you have been and where you are going physically, emotionally, or metaphorically. To be in liminal space means to be on the precipice of something new but not quite there yet.” Last night, perched on an uncomfortable hospital bed, Ravi and I entered liminal space. Walls and barriers between us fell to the side. I felt deeply that he was letting me into his world, inviting me in. Also, I felt that he was interested in coming into my world. This was a brave new space for us, and the moment ended too soon. But these brief, magical moments gave me hope. Hope for Ravi and hope for his future. Hope for a life outside of the hospital, outside of cancer. For Ravi, and for me, there will never be a life outside of autism. We are autistic. It is our neurotype. This does not sadden me. We do not need or want a cure; we just want acceptance and accommodation. We want time and space to explore the world and pursue our own interests. We want time to be together. I am deeply grateful for the time that we had together last night.

So, what now. I will finish up this blog. I will go for a run, feed the dogs, shower and return to the hospital. Hopefully, I will bring Robert and Ravi home with me. I will look for more liminal space with my son and with the world. In the meantime, be good humans and we will be in touch. Peace, Harriet.

To all our friends, we at the Herndon household (or the Herndon herd as we are sometimes called) are delighted to wish you a joyous Spring, a blessed Passover, a peaceful Ramadan, a happy Easter. I know there are so many religions and sects that I have omitted, but we wish you all a joyous season, a season of peace, rest, and renewal.

This has been a tough week for Ravi. Chemo has laid him low, but amazingly his labs look good. His creatinine level is better than it has been in months. This gives us hope that his kidney injury was acute rather than chronic. He has not needed transfusions or extra fluids. We wish he would take in extra calories, but he is doing an excellent job keeping himself hydrated. This week is his week off from chemo and we hope he can gain some extra ground. Next week begins cycle 6 of 8 for chemo. We hope and pray that we can put chemo in the rear-view mirror by the end of May. Somehow, it is easier to be hopeful in th spring. The snow is melting. Brave little crocus are poking their heads up. Birds are singing and twirling through the skies, singing and looking for mates. Two sparrows are building a nest under our eaves outside the kitchen window. Nikki, our cat, spends hours sitting on the back of my reading chair watching them. He thinks that this is the best prime time TV ever.

So, why am I writing at 4 in the morning? Because this seems to be when my muse kicks into high gear. It may also be because the cat is having his 4am zoomies around the house and decided that since he and can’t sleep, neither can the dogs! I imagine, 2000 years ago, that Mary and Mary Magdalene were also awake, mourning their Lord. They were waiting for daylight so they could go anoint his broken body. Instead, they would find an empty tomb and were given instructions not to seek the living among the dead, but to go and tell the disciples what they had seen. I love that the Risen Christ first appeared to women. They were the last to hold his broken body, they were the first to see and proclaim the resurrection. In a few hours, I will leave for early church. In the meantime, in the darkness, I wait, as Kirkegaard said, “in fear and trembling”. But the sun will come up. Tulips will push up through the dark earth. The bunnies will eat my hostas. The squirrels will dig up my petunias. Spring and new life is on the way.

Thank you to all who follow us. May you have a blessed, amazing, surprising week. Be good humans. Peace, Harriet.

Good morning, friends. Currently, we are hunkering down in the Twin Cities waiting for a massive snowfall. It is supposed to snow, then rain, then snow again. Ravi and I are predicting a big mess.

In the last few months I have been working on a new endeavor, turning this blog into a book! I have hired a wonderful editor, Abbey, who is helping me make sense of seven years of memories. I just got the latest batch of work back from her and it was a bittersweet journey down memory lane. So much has happened in the last four years. Covid, George Floyd, riots, presidential elections. Though I mostly write about Ravi, I also write about current events and how he responds to them. I remember how sad he was when schools were shut down due to Covid. I remember how thrilled he was with his unique “drive by” graduation from high school. As I worked my way through these memories, the diaries grew closer and closer to December 2022, when Ravi was diagnosed with cancer. These entries seemed so hopeful. Our little family had no idea what was going to happen on December 9, 2022. If this blog were a movie, there would be ominous music playing in the background. There would be some sort of foreshadowing that would let the reader, or the viewer know that something bad was about to happen. But there was no music. This is not a movie; this is just a blog. A blog I hope to turn into a book.

I had no idea going back and rereading the entries leading up to December 2022 would be so hard. I am waiting for the next batch of edited entries from Abbey. I assume that these ones will be even harder to read as we plunge into the depths of Ravi’s illness. I want to thank my readers for sticking with us in the good times and in the hard times. We feel your strength and your love for Ravi. We feel your prayers and good vibes. We deeply appreciate you.

On a brighter note, Ravi is the ambassador for St. Baldrick’s this month. St Baldrick’s is at the front of the fight against childhood cancer. If you check out my Facebook page there is a cute picture of Ravi (with hair) and a nice write up about him. Did you know that the American Cancer Society uses less than 3% of their funds to fight childhood cancers? Less research is done on pediatric cancers because they are rare. Media is dominated by stories about breast cancer and prostate cancer. This is all well and good, but I wish media would shine a brighter light on the children I see multiple times a week at Journey Clinic. The children who are fighting such big battles in their little bodies. The bald children, the sick children, the children with ports and g tubes that keep them alive. Research needs to help these children. 3% of the budget is not nearly enough. Ravi and his fellow pediatric patients deserve more.

This is not one of my more upbeat blogs. It has been a strange trip down memory lane as I edit 7 years of memories. If I were to assign music to this period of our lives, I am not certain what type of music I would choose. There has been too much ominous music of late. I am hoping for something happier and more upbeat. Ravi has his 5th cycle of chemo. There are 8 cycles. Somewhere in there will also be surgery and radiation. Right now, we are just focusing on getting through the chemo and hopefully ending that chapter of his illness. We are looking forward to granting Ravi his wish, to go see the ocean. we are looking forward to spring, Easter, resurrection. We are looking forward to warm days where Ravi can go for walks and ride his adaptive bike.

The wind is picking up and the snow if moving in. Spring is not here yet. If I had a soundtrack for today, the music would be contemplative. Not happy, not sad, just contemplative, as we wait for spring and new life. Thank you for joining us on our journey. Be good people and we will be in touch. Peace.

Hi there, my muse seems to have gone missing. Has anyone seen her? She usually wakes me up around 4am with something to write. The last two times she has woken me up, frozen, developed writer’s block, and has had nothing to say. Muse where have you gone? It is now 3:30 on a Tuesday afternoon and I am still looking for her. Where do I start? I guess I start with what I know, so here goes.

In my last blog I talked about getting up really early in the morning for a PET scan at Mayo. The scan itself was unremarkable, it did not show anything new. The devastating news was that after Dr. R, the surgeon whom I hoped would take Ravi’s case, saw the scan, she determined that her team either would not or could not do the surgery. Our oncologist, Dr Greengard, was just as baffled as we were, but continued to make plans. She gave us a referral to a surgeon that she trusts at Children’s whom we see in 2 weeks. She also wanted Ravi to have a GFR test to see what his renal function is currently. He spent a long weekend in the hospital, early this month, because his creatinine was too high and his phosphorous levels were too low. These problems were resolved after a few days and he was sent home, but it did delay cycle 5 of chemo by a week.

Yesterday was an 8 hour day at the hospital. The GFR test began at 7:45 am and went for 4 hours. Chemo followed this. Ravi’s creatinine was a bit high, so he was given fluids prior to the start of the chemotherapy. He did well through the transfusion and was sent home without issue. I received the results of the GFR test last night, though the team has not seen them yet or commented. With GRF, the higher the number, the better. A good working pair of kidneys would have a GFR of around 90. Ravi’s GFR was 66. On the other hand, his GFR from October was 59. This tells me that his kidneys have made some improvement and he is not in imminent danger of renal failure. Since no one from the team has called me, I am not too worried. If there was a problem, they would have touched base. I assume we will learn more at our Thursday appointment.

Ravi has begun cycle 5 of 8 cycles of chemo. Hopefully, he will be done with chemo by the end of May. I keep telling him that this weird life of practically living in the hospital is not forever. He will not receive chemo forever. With the grace of God, he will be able to go to his day program in the fall. He will have a life and friends again. I don’t think he believes me. Right now, he is off at Culvers with his dad and Peter. He was tired this morning but seemed willing to leave the house a few minutes ago. It is a sunny day and a good day to be out. So, this leaves me here with my pets and my computer, trying to summon my muse. I still feel like I am thinking and writing through a pool of molasses. Maybe my muse is just perpetually sleep deprived. Thank you all for the continuing love and support. I remind Ravi that he is not alone. He has an entire team praying for him and cheering him on. As we are about to enter Holy Week, I remind myself that one must journey through Good Friday in order to reach the Resurrection. In the meantime, be good humans and we will be in touch.

Hello, friends. It has been a long week. Currently, it is nearly 3am on a Sunday morning and Mr. Boo is still going strong. We are not certain why he is still up. He is not hungry, he does not seem to be in any pain, he is not particularly agitated, he is just….. awake. Currently, he is watching PBS kids and stimming happily. I am drinking coffee and trying to keep my eyes open. I got a few hours of sleep earlier, and then tag teamed with Robert so he could get some shut eye.

So, where to start? As I told you in our last blog, the PET scan looked good and Dr. Greengard was pleased. She reached out to Dr. R at Mayo to see if she would do ablations on the nodules in Ravi’s lungs. We had a zoom conference with her on Tuesday morning. She was cautiously optimistic. She thought Ravi’s lungs looked better but wanted to have a CT scan done to have another look. She said she would order the scan and someone at Mayo would be in touch. Wednesday afternoon I got the call from Mayo. They wanted to see Ravi immediately. Could we be in Rochester for a 6:30 am scan the next day? The lady said that the next possible opening was not until April. I felt a quick push from the Almighty and agreed that we would be there on the following day. Basically, when Mayo calls, one comes. As a friend said, it is quality care, but not always convenient.

On Thursday, we got up at 4am. We were out of the house at 5am. We arrived in Rochester at 6:30. The check in process was easy and the lobby was not yet busy. We were quickly ushered into the back and Ravi was changed and given some Versed, to take the edge off. He seemed perfectly relaxed, but we never turn down Versed. I walked, he rolled, into the scan room, was given another light sedative, and was out for the count. I went and joined Robert in the waiting area. The lobby was busier now. A volunteer was giving people hand massages. She was working with the couple next to us, chatting softly, when the nurse came to find us. I was eager to follow the nurse, but I would have not said no to a massage. When we got into Recovery, Ravi was just starting to wake up. His team had not had to use much sedative, so he woke up much more quickly than usual. He was under a mound of blankets. I slipped Sam to him, and he promptly told he that he wanted a cheeseburger. No surprise. Poor kid had been up since 4am and had not eaten. As soon as humanly possible we got him dressed, up, and out. There is a Culver’s on the way out of town, so we stopped and got him a double butter burger with cheese and extra pickles and onions. He happily devoured it, and we got back in the car, heading for Minneapolis and the Journey Clinic. We left Rochester about 10:40 am and arrived at the clinic around noon. Robert parked the car while I checked Ravi in. Labs took a long time to come back. Ravi’s hemoglobin was at a 7, which meant he needed a blood transfusion. This surprised me. I can usually tell by looking at him if he needs fluids, platelets or blood. Today was different. His color looked good, and he had plenty of energy. We sat back to wait for the blood to come up from the blood bank while Ravi happily munched his way through a pile of snacks.

At some point I looked across the room and realized that my spouse was sound asleep. He is not a morning person and he had done all the driving. I knew we would be at the clinic for at least another 2 hours, so I suggested that he go home, let the dogs out and take a nap. He agreed that this was a good idea and shuffled out the door. Ravi’s transfusion came up from the blood bank and we settled in for the next 2 hours. The transfusion was uneventful. His blood pressure and temperature stayed exactly where they should and as long as he had Sam and snacks, he was perfectly content. Eventually, all the blood drained out of the bag and into my kid. His port was heparin locked and de accessed. I called Robert to come pick us up and we headed downstairs.

After a stop by Wendy’s for another double cheeseburger, we finally arrived home, around 6pm. We had been on the move since 4 that morning. Ravi’s friend Peter came over to say hi and I was in bed before 8pm. I slept for nearly 12 hours, and it was wonderful. Friday was just a lazy day, hanging around the house. I b0ught new running shoes, tested them out, and met some dear friends for dinner. Yesterday, I broke the shoes in some more with a 10-mile trail run. I had visions of an early bedtime with lots of sleep, but Ravi had other ideas.

We have not yet heard from Mayo about next plan of care. Dr. Greengard said that the CT scan looked good and, in her opinion, Ravi should be a good candidate for ablation. This would be more like doing a biopsy, than a traditional lung surgery. We do not know how long the recovery time is, but are hopeful that it is shorter than the recovery time from a more traditional approach to lung surgery.

So, here we are. It is nearly 3:30 in the morning and Ravi is still going strong. The dogs and cat finally went to sleep. I wish that Ravi would follow their example. Something tells me that I am not going to make it to early church in the morning. Thank you to everyone who reached out with encouragement during our long day. Thank you to Penny who came over to play with my pets and then organized my kitchen and pantry. You all are the best. I will update this blog as soon as we know what the next plans are for Mr. Boo. Until then, be good humans and we will be in touch.

Hello, friends. In the past week, Ravi has rediscovered his love of food! For the past year, he has primarily gotten his nutrients via a g- tube . He has never registered any complaint about this, in fact, was quite compliant about getting his feeds. This all ended last weekend. I hooked him up to his pump and he curled up on the bed with Sam and a favorite blanket. Suddenly, he sat up, unhooked the tube (causing formula to cascade all over the bed) and headed for the kitchen. I turned up the pump and followed him. He made a beeline for the refrigerator and began pulling out food and eating with gusto. We were more than bit amazed, but very happy . In the past week he has let us know exactly what he wants to eat and this includes: lots of yogurt and ice cream, meats of all sorts, cheeses, candy, and Gatorade. Last night he discovered that he likes gyros. Robert and I are ecstatic. Ravi’s color looks good, he is slowly gaining weight, and he has more energy. Chemo still really hits him hard, but he is able to work through it, with some long naps thrown in for good measure. I am totally in awe of cancer patients who are able to work during treatment. I don’t know how you do it, but my hat is off to you. Chemo is a harsh mistress.

So, what is next? Right now, knock on wood, we are in a period of calm. This is the first time in 14 months that we have not been in acute crisis. Ravi just finished cycle 3 or either 6 or 8 cycles of chemo. He has a PET scan scheduled for February 15. This is always a source of great anxiety for us, as one never knows what a scan will show, but we are trying to live in the minute, and right now these minutes are filled with joy.

Ravi is especially happy because he is now getting OT, PT, and SLP. He had his first speech session a few days ago and really liked the speech therapist. We set some goals for him, and we all chatted for a bit. I have a good feeling about that. Clearly, she was on his wavelength. Ravi was so happy after that appointment. We are looking forward to his next session. 

We are tentatively making plans for Ravi’s wish trip. In late spring or early summer, we hope to take a train back east, visit my cousin Paul in CT, and take some day trips to the ocean. We are very excited for Ravi to see the ocean and hopefully dabble his toes in the water. 

So, for now, we are in a good place. I hope I don’t jinx it by talking about it. Ravi is happy. We are at home. He is eating and thriving. We are keeping Subway, Taco Bell and the Greek take out place in business. Be good humans and we will be in touch. Peace, Harriet.

Suddenly, we are three weeks into January. How did this happen? One day at a time, I guess. Ravi has been doing well. He had a week in the hospital in early January due to an infection but is now home and thriving. He is enjoying both PT and OT. The OT assessment was eye opening for me. I thought that he had lost a lot of his activity of daily living skills and had gradually taken them over for him after his surgery. It turns out that these skills were not gone, just lying dormant. To my surprise, Ravi is perfectly capable of taking on and off his socks and shoes, washing, soaping, rinsing, and drying his hands, working with putty, and picking small beads up out of putty with his left hand and fingers. It seems he was just waiting for someone to remind him that he still has these skills and was waiting for a prompt or some encouragement. The OT, Katie, was wonderful, and thought that he only needed to come in once a week for about 3 months and he would be all caught up. Ravi seemed very proud of his accomplishments. He continues to love and be frustrated by PT but is always happy when handed a basketball. Next week he begins speech. He is making meaningful communication with his AAC, Sam, and I am eager to see what he can do with extra guidance. 

January is my birth month and I wanted to do something special for our cancer community. St. Baldrick’s is a 501 C3 that raises money for pediatric cancer research. In lieu of presents, I asked friends and families to donate to them, setting a goal to raise $500. I have no background in fundraising at all, so this was done on a wing and prayer. I posted a recent picture of Ravi on social media and a brief description about why we were raising money. To my absolute delight Ravi’s followers came through for him. In less than a week we raised over $500. Friends, thank you so much. We are ecstatic and humbled. You are helping us put cancer research in the front seat and cancer cells in the rear-view mirror. 

Currently, we are in cycle 3 of either 6 or 8 cycles of chemo. Ravi is tolerating it well. It makes him tired and has him craving all sorts of interesting foods, but he is powering through. A nap now and then never hurts. His schedule is packed. He is now being followed by wound care and Infectious Disease. In addition to chemo and labs, he also has PT, OT, and SLP. This means many hours at the hospital, but we sleep in our own beds at night. The PT, OT and SLP gives him something fun and challenging to look forward to, as well as boosting his skills. Shout out to my ever-patient spouse, Robert, for keeping track of the copious amounts of medications Ravi has to take. At last count, I think he is on 9 different medications, taken at various times throughout the day. When he is not cutting up, grinding, or measuring medications, Robert is often found driving Ravi to his many appointments. It takes two of us to get Ravi to the hospital, get him to his appointments on time, and find a parking place. As the nurses are fond of saying, “Teamwork is dream work”, and I could not do this journey alone. Robert, my love, thank you.

It is 5:12 am. I have no idea why I am up. My muse strikes at unusual times. On the other hand, I cherish the quiet early morning hours, when it is just me, my pets, coffee, and my thoughts. Friends, thank you again for your prayers, good energy, food, love, and financial contributions to St. Baldrick’s. We are humbled and grateful. It is good to know that we are not on this journey alone. Be good humans and we will be in touch. Peace, Harriet.

#TeamRavi is back! We just spent 8 days inpatient and are very happy to be home. Two Fridays ago we checked into Journey Clinic for a routine check up. Vitals were good but Ravi’s white blood cell count was very high, indicating an infection. Also, the wound on his shoulder was not healing. On the counsel of our wise nurse, we checked into the hospital. Unlike other hospitalizations , this one was not fraught with panic or sheer terror . This was just a maintenance visit to get an infection under control. No chemo was given so Ravi felt pretty good. He was on 8 days of IV antibiotics and had wound care following him, but he did not feel sick at all. While we were in the hospital, Loaner Sam, his loaner AAC came from the company. Ravi had spent all of Christmas season mute, as Sam had sadly developed a problem with his charger. As soon as we got Loaner Sam I rushed the device to the hospital. Ravi was over the moon happy. He began talking and babbling immediately. After that, the visit was easy. He had Sam, he had his iPad, he had lots of nice nurses checking on him, and he felt good enough to do lots laps around floor 5. Friends and therapy dogs came to visit. For someone who was stuck in the hospital, he was being a very good sport about it. Robert and I flipflopped as to who would stay with him overnight and who would go home to take care of the animals. During the day all three of us were together at the hospital. Yesterday, I learned how to administer wound care and we were set free in the world, told we did not have to come back for at least two days. We were delighted. Ravi had other things in mind.

We arrived home on the coldest day of the year. I do not think it got above zero, yesterday. As I am writing this, it is minus 8F outside, but feels like minus 30. The high today is supposed to be an even zero. Even though I consider myself a hardy midwesterner, I think I will not run outside until the mercury rises above 10 F and the sun comes out. Once home, Ravi happy curled up on his bed and took a long nap with Robert. I did some laundry and caught up on some correspondence. We ordered in dinner but Ravi was still sleeping. Around 8pm I went in to check on him and hook up his G tube for another feed. Imagine my surprise when I saw that the G tube was no longer attached to his body! Ravi was not at all disturbed, but I was! I did a quick all to the resident oncologist on call. She laughed and asked if we hadn’t just left the hospital that afternoon? I sheepishly admitted that we had but were now in need of more assistance. She said that we would need to go the ER and she would call ahead.

Twenty-five minutes later found us at the ER. To our surprise and delight, there was parking right outside the door and virtually no wait. We were seen by a nurse immediately and by an ER doctor only a few minutes after that. The G tube hole had not had time to close, so it was just a matter of finding another G tube that would fit. This took a little while. Many G tube users are little kids and it took some looking around to find a larger one. A larger G tube was eventually tracked down in the OR, was inserted with no fuss whatsoever, and we were sent on our way. We made it home before midnight, tired and relieved. It took another 2 hours to get enough feeds and all of his meds into Ravi. Before the last feed ended, he had fallen into a deep sleep. It was a busy day!

I am not certain what the next week will bring. Hopefully, we can just stay home today, stay warm and cuddle our pets. Monday, we check into the Journey Clinic. I do not know if he will receive chemo or not. Tuesday, he has his beloved PT and then an appointment with neurology at a different hospital. Thursday, we are back Journey Clinic for labs and a check in.

So…. we are okay. Thank you for everyone who checked in on us, brought us food or let our dogs out for a respite in the back yard.  We were not planning on spending the last 8 days inpatient, but there you go. Ravi was well taken care of and this stay did not produce any trauma. He was well taken care of, as always, and did not feel acutely ill. So, stay warm. Cuddle your pets. Be good humans, and we will be in touch. Peace.