Harriet's Hedgehogs and Autism Advocacy

It is 5:45 am and Ravi is up and grinning like a madman. Actually, he never really went to sleep last night. He seems to have gotten his days and nights flipped, which in a hospital, is easy to do. He slept relatively well two nights ago but was up and ready to go at 4am. He stayed up until about 10 am and then crashed for a few hours in a deep sleep. Midafternoon on Sunday he woke up and has been up ever since. He is not in any apparent distress. He is not hungry, per se. He is very smiley and interactive, which is a joy to see. He is just…up. At a little after 5am I gave up on the idea of sleep, got his and my shoes on, and with the help of a night assistant, we went out for a tour of the ward. He was happy to see all his friends at the nursing station. They all joked and said that he had become a night nurse. Back in our room turned down food and his beloved Sam. Right now, I am typing this, and he is grinning at Amy, the night assistant. I have no idea when he is going to crash. I deeply hope that this lack of sleep does not cause a seizure. If we can wean him off his small dose of morphine today, he might be able to go home tonight.

Ordinarily, I would be grumpy at having had no sleep at all. I am not grumpy. I am overjoyed. Ravi is back! He is smiling and stimming and being his usually Boo-like self. Using Sam, he told me he was happy and excited. These are all very good things. It has been weeks since I have seen him smile or heard him laugh. I will stay up all night for those things.

So, count your blessings. Pass the coffee! Boo is up and all is good with the world. Peace out and be good humans.

Life has been rough for Ravi the last week. We checked into the hospital early Tuesday morning. It became rapidly apparent that he was in no shape to receive chemo. Despite begin fed and hydrated through his g tube, he had lost 5 pounds in 3 days. His mucositis was out of control and he was in extreme pain. In the clinic he was given a bolus of fluid and a shot of morphine. When he was stable, we moved into a room on the fifth floor, oncology. Thus began a few days of fever, pain, and the extreme inability to eat or drink by mouth. Cultures were drawn and sent to the lab, but no one could explain the 103 F fevers. No one could explain the seizure like movements in his face and eyes. He was put on fluids, feeds every 4 hours around the clock, a morphine drip, Ativan, and Tylenol for breakthrough pain. Most of yesterday he slept deeply, wrapped in blankets like a giant butterfly in a cocoon. When he is asleep his resting heart rate is around 50 beats per minute. Yesterday, it hovered around 100. His temperature fluttered between 99.5 and 102.5. He moaned a lot in his sleep. I felt absolutely powerless. The doctors assured me that they were not going to give him chemo during this admission. He was here to heal from the raging mucositis and gain weight. The hours dragged by. The only relief I had was practicing Bach on the electric piano in our room and getting on the treadmill once a day for a run. The rest of the time, my focus was solely on Ravi.

I went to bed around 11pm last night. Suddenly, at midnight, Ravi sat bolt upright, bright eyed, and started looking around. I handed him his beloved Sam and he chattered happily. He requested a trip to the bathroom and had a few sips of Gatorade by mouth. I did not sleep last night, and I am happy. He was up all night, happily chatting with Sam or watching videos on the iPad. His fever and pulse were down. His eyes were clear and bright. His lips were looking a bit less painful. He has gained back a tiny bit of weight. He is still very shaky on his feet and a walk across the room tires him out.

Currently, it is 6:30 am. Sun is not up yet, but Ravi is! Mercury got home from OSU last night and we will see her today. The pets are rejoicing, except perhaps for the hedgehogs, who are really in it for the bugs. I don’t know when we will be discharged. I don’t know when Ravi will receive his next dose of chemo. He has a lot of ground to make up. But he is happy and smiling, and that is enough for me. Thank you all for your texts, your emails, your prayers and Healing Touch from afar. Ravi has felt your love and is responding.

Oh, my poor neglected blog! I have so many thoughts, and so little time to put them into words. Ravi and I are about to check back into Masonic Children’s Hospital for the next 2 days for 2 rounds of chemo. If all goes well, he will be discharged on Thursday and can stay home for 2 weeks, except going in for labs. Mercury is coming home from OSU for spring break on Friday and I am so excited to see them.

Since we last chatted, Ravi is now the owner of a g-tube. He was unable to stay hydrated or nourished simply by eating by mouth. 10 days ago, he had surgery and had the g tube placed. From the outside, it just looks like a little button on his abdomen. It is attached to a tube that goes directly into this stomach. Through this tube I can give him, meds, hydration, and high calorie formula. He has not really gained any weight, but he has not lost any weight, either so I will call this a win.

Through all of this hardship, Ravi has been an absolute trooper. He does not feel well a lot of the time, he has very little energy, but he is still smiling. He still loves to chat with Sam, watch PBS kids on his iPad, or listen to music. In the hospital, he loves music therapy and PT. We have visits from Inka, the therapy dog, and the lovely practitioners from Healing Touch. Music therapy put an electric piano in our room, so I can still practice my beloved Bach. Ravi seems to relax when I practice piano, as my music has been the soundtrack to his days almost all of his life. Music is good therapy for both of us.

Thank you to all for your prayers. good vibes, visits, presents of silly hats and socks, and for just being you. You have carried us through some dark times. Be good humans and we will chat again soon.

To our great delight, Ravi was discharged from Masonic Children’s Hospital this afternoon. He came through the last two infusions very well. He seemed a bit surprised to be leaving the hospital after 11 days, but as we started to drive home, his smile and his eyes got bigger and bigger.

Just last week, his beloved Taco Bell reopened after being remodeled. We stopped by the get him a Freezie and a snack. I was not certain what he would be able to eat after chemotherapy, but I was willing to give it a try. I handed him his Freezie and he grabbed it from my hand and began slurping so hard he promptly got brain freeze. He withdrew the straw from his lips, gave me a brilliant smile, and dove back in for more.

Upon arriving home, he made a beeline for the bag. In short order he devoured a chicken quesadilla, a burrito supreme, the rest of his Freezie, and mine as well. I was pleasantly stunned. After his last round of chemo he had not been able to eat for 36 hours, which ended up getting him readmitted for nutrition. This time, I knew better what anti-nausea meds helped him, and was able to advocate that he receive these meds. A few hours after we got home, I gave him another dose of anti-nausea medicine, and he seems to be having no problems. I am ecstatic. If I can stay on top of his nausea, I can get him to eat and stay hydrated, then he will feel much better.

One of the reasons he was in the hospital so long was he developed an infection in his port. Fortunately, the infection did not spread to his heart. We were very lucky. He had an operation to remove the port and had a pic line put in his left arm. He is receiving IV antibiotics every 8 hours for the next 2 weeks. In order to get him out of the hospital, I had to be trained to administer the IV antibiotics. On a practice dummy, it is fairly straight forward. At 10 pm, I will find out if I can do this as easily on a live person! I am a bit nervous. He needs to get infusions in his IV line ever 8 hours, at 6am, 2pm and 10pm. Since infusions do not hurt, I should be able to sneak 2 of them into him while he is sleeping. When I infuse the 2pm dose, I will make certain to have distractions on hand. Wish me luck!

Robert and I are thrilled to have Ravi home and he is very happy, too. He is loving his new collection of hats and technical t shirts. Thank you to everyone who wrote, visited, dropped off food, sent care packages, or prayed. This means so much to all of us. You all are good humans. Peace, Harriet.

Ravi went into the hospital 10 days ago and we are fervently hoping and praying that he gets discharged tomorrow. He has had 2 more rounds of chemo, developed an infection in his port, and had surgery to take the port out and put in a pic line in his left arm. He is on IV antibiotics for the next 2 weeks. Yesterday, I learned how to administer IV antibiotics and the supplies should arrive at the house at about the same time that he does. Right now, Robert is at the hospital with him, and I am home with the pets. We have been tag teaming each other, as to who sleeps at home and who sleeps at the hospital. Normally, I stay at the hospital and come home for a bit during the day to visit the animals, do laundry, dishes, etc., and get a few minutes out from under. Currently, I have a happy hedgehog in my lap and three dogs and a cat at my feet. I am in my favorite chair and the sun is shining. Ravi should be about to finish up today’s round of chemo. The nurse gave him a shot of Ativan, so he mostly slept through the entire thing.

In order for Ravi to come home, he needs to eat something tonight and not spike a fever. We were so close to coming home last week, when he spiked a fever of 102 F and we realized we had a serious infection on our hands. Thanks be to the Creator who did not let us go home. Hopefully, tonight and tomorrow will go smoothly, and this time tomorrow he will be in his own home.

I am a bit nervous about administering the IV antibiotics, even though it seems pretty straightforward. As long as I keep everyting sterile and follow the correct procedures, we should be fine. Hopefully, he is home until February 20, when we do repeat scans to check on cell necrosis, and have another round of chemo. His body is pretty beat up at the moment and he needs time to rest and to heal. Thank you to everyone who has stopped by, dropped off food, or prayed. It is greatly appreciated. Hopefully, at this time tomorrow, I can tell you that our boy is home. Be good humans. Peace.

Hello, all. Thank you so much for the birthday wishes. We had a lovely, quiet day at home. Ravi spent all last week in the hospital, as he will this week. On Monday they gave him Methotrexate. The rest of the week they pumped him full of fluids and measured his Ph. He had to have less than 0.1 in his system in order to go home. This number was not hit until Saturday morning. Robert spent Friday night at the hospital and let me go home, as I had not been off of floor 5 since Monday morning and was going stir crazy. It was such a blessing to be in my own home, eating my own food, drinking coffee from my coffee maker and being surrounded by my pets. The dogs and the cat had a lot to talk about.

Saturday morning, I picked Robert and Ravi up from the hospital. Ravi was so happy to be home. His appetite was good. He is loving both salty and savorty foods. Special thanks to Dan and Robyn who brought over take out from Hong Kong Noodle. Ravi discovered that he loves pot stickers. Who doesn’t. He also had no problem sampling different dishes of beef, chicken and tofu with a variety of veggies.

We are back to Monday again and I am packing our hospital bag. We check in at the lab at 11am, get our levels checked and then go down to floor 5 to get another dose of Methotrexate. This week we will be much more vigilant about getting Ravi up and out of bed and workiing with the PT team. He lost a lot of strength last week and took a bad fall at home. Right now his poor face looks like he was in a bar room brawl. But, he is still happy and smiling. This young man amazes me every day.

We are allowed to have visitors, to if anyone wants to drop by and say hi, we are at the Children’s Masonic Hospital on Riverside Ave. Check in at the front desk and they will direct you where to go. Hopefully, the methotrexate will leave his system faster this time and he can go home before Saturday. Send him good vibes, prayers, and that his levels are below 0.1. Thank you all for your continued support and love. Be good humans.

Last Tuesday was an amazing day. Boo woke up at 4:30 in the morning and told me he wanted to eat peanut butter and go to school. I could help with the peanut butter immediately, but school had to wait a few hours. I was ecstatic that he had enough energy to want to go. At 10 am sharp we pulled up in front of Focus Beyond and he got a hero’s welcome. He had the best day! Teachers and aids told me they had never seen him smile so much, and he is a pretty smiley kind of guy. That evening, I went out for a run with by run club. It was the first normal feeling day our family had had in over a month. It was glorious!

This got me feeling a bit hopeful. I had deleted everything except Ravi’s medical appointments out of my phone. Just to make the calendar look happier, I added school to the next few days. Bad idea! Fate came flying back at me like a boomerang and upset all my happy little plans.

Wednesday started out icy. Schools were delayed and Ravi was sleepy. I decided to let him sleep and see if the roads cleared up. Midday he woke up but was low energy. I texted his teacher to let him know he would not be coming in. He just seemed off. At 2pm he had his first seizure of the day. This was his first one in over a month. It lasted a couple of minutes and then he slept deeply. I called the doctor on call and he said just to wait and see what happened. He did not think the seizure was caused by any of the cancer drugs. I also called the neurologist on call at Gillette. He told me to wait and see. Ravi dozed most of the afternoon and refused all food and water. Our worry deepened. At 7pm he had another seizure. I called the hospital. We discussed the lack of eating and drinking and the most recent seizure. Neither of us wanted to bring him into a germy ER full of sick kids, but we decided that our threshold for bringing him in would be one more seizure. At 10pm he seized again and I had to apply rescue medications. I called the intern on call and said we were coming into the ER.

The ER was amazingly empty and we got seen immediately. His vital signs were taken, blood was taken for cultures and he was hooked up to an IV. He was very tired, ataxic and out of it. Eventually, we were given a room on floor 5, oncology, and sent upstairs. We got settled into bed around 2am. He fell deeply asleep. I did not sleep at all.

The next morning, we met with his team. It was decided that stress had caused the seizures and the chemo was causing his body considerable stress, and he was still unable to eat or drink. The plan was to keep him in the hospital, get him stable and run TPN through his port for instant nutrition. The day past rather peacefully. That evening was a different story. Ravi usually gets his evening meds around 9pm and goes to bed by 10 pm. If he misses this crucial window of time, he gets a second wind and is up at night. Pharmacy was late, very late in sending up his meds. They slowly trickled upstairs. By midnight he still had not received his anti-seizure med. I politely but firmly told the nurse that this was not okay. He had already had 3 seizures the night before, and lack of sleep causes seizures. She went to light a fire under pharmacy. Eventually, the Fycompa appeared, and we gave it to Ravi. Too late, we had missed the crucial window of time and he stayed up until about 4 am. I did not sleep at all. Nurse and aids were in and out of the room all night long and rounds started early that morning.

When the doctors came to round Ravi was still sound asleep. They decided he was stable enough to go home that afternoon. He would be on a higher dose of Fycompa, and they would gradually reduce his TPN flowing into the port. Ravi continued to snooze. We were dismissed around 3pm, went home and spent a lovely evening with Mags and Aya. Bedtime came and we realized that we did not have Ravi’s meds that I had taken to the hospital with us. Oh no! This is when I learned a valuable lesson. Never take personal meds to the hospital because nurses will take them and lose them. Robert called the charge nurse who went looking for the meds but never called back. Ravi was wide awake and stayed that way for another 12 hours.

Morning came and we were all fried. Ravi looked horrible and Robert and I did not feel much better. I called the pharmacy and was able to get an emergency 3 day supply of his clonidine, which he needs to sleep. I called the doctor on call who assured me that it was the lack of clonidine that had caused the insomnia. Robert went to the pharmacy to pick up the clonidine. Ravi continued to pace, flap, and hoot. It was like he could not get comfortable in his own skin. I felt so sorry for him. Robert returned with the clonidine and set off for Fairview to try and track down the missing Fycompa. I gave Ravi 2 clonidine and an Ativan for good measure. Mercifully, in 20 minutes he fell into a deep sleep. I spent the next hour calling different providers to try and get emergency med refills. This was not easy to do on a holiday weekend. Robert came back in from the hospital. He had not had any luck getting the nurse to find the meds. Just as we were about to give up hope, the nurse called back. She had found the Fycompa. It was not the right amount, as we needed a prior authorization to go up 2 milligrams, but it would be enough. Robert turned around and set off for the hospital once again.

In short, it was a very long 72 hours in which I did not sleep at all. We learned to never take our own meds to the hospital. I learned to use my voice to get nurses to give my child his meds in a timely manner. Robert gets high marks for simply hanging out at the hospital and not giving up until meds were found. I learned not to put anything new or hopeful down in my calendar that looks like a normal activity. Yesterday was a blissfully peaceful day. Ravi got all his medications on time, did not have a seizure and was able to eat some on his own. Today we return to the hospital for a day or two while he receives his next infusion. I hope that his hospital stay is less traumatic. We are taking all your thoughts, prayers, and good intentions with us. We are leaving medications at home. The hospital pharmacy can provide all the medications. Through this all, Ravi has been a trooper. He has lost his hair, had 3 seizures, been unable to sleep, and yet is still smiling. The kid amazes me. I am proud to be his mom. Be a good human and we will be in touch.

Getting Boo to eat is a fulltime job. He does not like the smell of food and prefers that I bring small amounts of food to him in his bedroom. Keeping him hydrated is relatively easy, but solid food is a bit of a challenge. Today Robert brought him a 12 inch sub from Subway with just about everything on it. For this, Boo mustered enough strength to make it into the dining room and sit at the table. I did not ask him to do this, he just did it. Half the sub vanished in about 5 minutes flat, along with a handful of chips. Then he wandered back into his room. A few minutes later he emerged and ate the other 6 inches. HIs color looked a bit better after that. What I am learning is that each day must start with copious hydration. Then I will offer him Ativan, Tylenol, and his usual other med. This damps the nausea down enough that I can usually get him to eat some meat or some cheese. He has developed a love for string cheese. He is not interested in fruit at all, but happily ate all the veggies on his sub. He has labs drawn every Monday and Thursday. On Thursday I got a call from the lab saying that his white blood cell count was very low. They did not think he needed to come in for a transfusion but wanted me to watch him carefully for a fever. If he spikes a fever, we are supposed to head for the hospital immediately. So far, no sign of a fever, just unrelenting fatigue. His team has given him the okay to go to school, but he barely has the energy to make it from his bedroom to the bathroom. Right now, school is a fantasy. I took him out for a ride in the car and a stop at a drive through yesterday, and that wiped him out for the day. We go into Journey’s Clinic on Monday for labs. I will not at all be surprised if they decide to check him into the hospital. In a sense, I wish they would. The rest of the time it is me watching him, wondering if I am taking care of him the way that he needs. This is the weirdest endurance race that I never signed up for.

On a brighter note, I got outside today and ran 8 or 9 miles. I have not run this far since November. It was slow, but it was such a joy to be out. The path was plowed and packed down. The woodpeckers were raising a happy racket in the trees by the river. There were lots of runners and walkers and tons of dogs. It made my heart happy.

I was about to close out this entry when Boo suddenly got to his feet and headed into the dining room. Mercury, Eliyah and Robert were eating steak. Boo sat down and looked interested. I cut him up a few bites of steak which he slowly ate. He downed this with another glass of Gatorade and headed back into the bedroom. I will keep the steak on the table in case he wanders back in. I have found keeping foods out that he can just graze on at will seems to work fairly well. Too much food offered at once, and strong smells will cause him to flee the scene, but little bites at a time are acceptable.

A huge thank you to my running group, TCRC, for giving Boo a huge supply of technical race t shirts to wear. He seems very comfortable in them and has not been tempted to mess with his port. Thank you also to people who have sent me food, dropped food off for me, or loaned me the charger to their Garmin when i could not find mine. I hope everyone has dug out from the last 3 days of snow. Smile at people and be good humans.

Boo continues to amaze me. I have watched him go through procedures that would bring grown men to their knees, and he is still smiling. He and I are very happy to be home from the hospital for a couple of weeks. The dogs and cat had much to tell me. Food is a bit of a challenge. He feels nauseous a lot of the time. He has drugs that help combat the nausea, but it is hard to get him to even open his mouth. Our best bet is an anti-nausea drug that dissolves on the tongue. If I give him that in the morning, and then follow up with some hydration, he seems to do better.

All his life, Ravi has loved sweet things. This has come to a sudden and complete stop. He is now all about the salty and the savory. Foods that he has happily devoured are garlic fries, burritos, cheese sticks, queso without the dip, and assorted drinks, either sodas or Gatorade. No real interest in popcicles or ice cream. The nurse told me to let him eat whatever he wants to and to try and stay on hop of the nausea and the hydration. We go in to labs tomorrow and just have his team see how he is doing. I am a bit worried as we have a major storm rolling in tonight, but we will drive carefully and take back roads. Fortunately, the hospital is only 4 miles away.

Thank you all so much for your warmth, your prayers, your good vibes, your white light. We can feel them. A dear friend just sent me an amaryllis bulb which I planted and put with my other plants. Green growing things make me happy. The amaryllis is a good sign of new life. I will keep you posted as I am able. Boo reminds you to be good humans. Peace.

Our world has turned upside down in the past three weeks. On December 8, Robert and I noticed a lump on Ravi’s left shoulder. Fast forward a day, we found out it was a tumor. Suddenly, we were in line for a biopsy and PET scan. In short, he has osteosarcoma, which has spread to his spine and his lungs. We started an aggressive chemotherapy regime this last Tuesday. He and I were in the hospital for three days while he got a port, started chemo, and had lots of anti-nausea meds and electrolytes pumped into him. We were released yesterday morning. Both he and I are enjoying sleeping in our own beds without any incessant beeping noises in the background or having vitals checked every few hours. Mostly, he just wants to sleep. He did eat some last night and we got meds into him. This morning has been really hard. I got an anti-nausea pill under his tongue and a few syringes full of Gatorade down his throat. I still need to get the rest of his daily meds and his pain killers into him. I know if we can get on top of the hydration, he will feel better. I am really hoping we do not have to go back into the hospital to rehydrate him.

What does life look like from here? Good question. He had his first round of chemo. Now he has two weeks at home to rest, going in for labs twice a week. On January 16, we check into the hospital for at least 72 hours for his next round of chemo. We will do that for three weeks, then have two more weeks at home. This will continue probably until March, when his surgeon removes the tumor from his humerus. He will be on rounds of chemotherapy for nine to twelve months. His oncology team has said he may go to school whenever he feels up to it, and as soon as his port heals, he can begin taking his beloved baths again. I am trying to retain any sort of normalcy I can for him. I am asking if anyone is to come by the house, please wear a mask, wash your hands, and if you have any cold symptoms, come back another time when you are healthy. We love visitors, but not germs!

Robert has been amazing. While I have been in the hospital with Boo, he has been taking care of things on the home front, running errands, bringing me food, and just being a constant source of reassurance. Mouse and Eliyah are at home and taking care of the animals. Mouse is loving their studies at OSU and had a good first semester. Though I miss them when they are gone, they are having a great time at college. I am curious to see what adventures they get up to this spring.

Through all of this, Boo has been a trooper. He has not cried or complained. I have yet to see him smile today, but he was smiling and cooperating through some hospital procedures that would have brought most adults to their knees. He reminds you to be good humans. We happily solicit and accept all good vibes, prayers, white light, or whatever you have to send our way. Positive energy is always welcome. We wish you the best in the New Year and we will be in touch as we are able.