Normal?

Well, maybe a new normal. Ravi has been home from the hospital for 5 days. He has spent a lot of that time sleeping. In a way, it is very much like bringing home a newborn. He sleeps a lot more than the average newborn, or at least sleeps in longer spurts, but we spend a lot of time keeping track of how much he eats, drinks, sleeps, poops, etc., well, you get the idea. He is on a stunning number of medicines. He was dramatically underweight when we discharged, and his stomach was not so sure it wanted to handle food. He had been on TPN for days, and then really slow feeds of his G tube, trying to convince his guts to work again, without putting him through excruciating pain. The first few days at home he took in nothing except G tube feeds, Gatorade, and the occasional cracker. Yesterday gave us some hope. He ate a taco for lunch and then used his AAC to request a burger and fries from Culvers. Over the course of the evening, he ate the whole thing, plus a few tentative tastes of Robert’s milkshake.

Today we checked back into the Journey Clinic. His labs look fairly decent, even though his hematocrit is low. He has been very nervous about going anywhere in the car. I think he is afraid he will end up back in the hospital. I promised him that we were just checking in at the clinic, drawing some labs, and then would go to Taco Bell. At the drive through, I ordered all of his favorite things. I got him a Strawberry Freeze, Nacho fries, and three soft beef tacos. In the car he dove into the fries and Freezie with gusto. Over the course of this evening, he has been slowly whittling away at the rest of his plunder. Just being out and about is very tiring for him. He is now happily lounging on his bed, chatting with Sam, his AAC. He was able to walk to the car and back, but we used a wheelchair the rest of the time at the hospital. We were happy to see he had gained 2 pounds, but he is still very fragile. On Wednesday he will be sedated to remove his port and his central line. A new port will be put in to replace the one which got infected. This will be his third port, and we hope that this one lasts a bit longer than the previous two.

Monday we are meeting with Dr. G, his oncologist to discuss next steps in his treatment. I am interested in what she has to say, but do not want to make any decisions until he has had another PET scan and we have had a chance to discuss the results. I want to see if these last two cycles of chemo have done any damage to the mets. I am leery about doing another cycle of Ifosfamide, as it can cause seizures in neurotypical kids, and has already caused Ravi to have had two clonic tonic seizures. The chemo itself is probably not responsible for his month in the hospital, but it did deplete his white cells enough so that he was open to all sort of opportunistic infections. He had an infection in his port, he had pneumonia, he tested positive for C diff, he was on at least 5 different antibiotics and his guts pretty much shut down. In good conscience, I can’t ask him to go through this again. He would not understand. It was a miserable month.

Right now, I am choosing to live in limbo. I honestly don’t want to think about next steps. I want to give Ravi time at home to gain back his strength and weight and his sense of humor. I want to do fun things with him and take him places in the car that are somewhere other than the hospital. I want him to have enough strength to walk around the block with me and look at the changing leaves. I want to take him to Target and Como Zoo. I want Robert to sing to him and make him laugh. I don’t want to think about more cycles of chemo or the surgery needed to remove the mets from his lungs. I just want some time for us all to rest.

Thank you to all who call, or pray, or send good energy. #TeamRavi is really tired right now and we need a lift. We are still fighting. We are not giving up. We just need a little time as a family to regroup. Be kind to others, you never know what your smile can do. Be a peacemaker. Be a light bearer. Be a good human, and we will be in touch.

Author: snort262

I am a wife, mom, long distance runner and fierce autism advocate. My background is in education. Currently, I am a paraprofessional at a Title One school, a fighter for kindness and social justice, and a fervent animal lover. View all posts by snort262