I'm a mother, a nurse, an advocate, a caregiver, a doctor, and oh did I say doctor?
One of the most challenging obstacles Ryan and I have had to face and accept is that 22Q and it's many quirks is still a mystery to most. When finding out Cohen had 22Q in utero, we immediately met with a geneticist who explained to us more about his genetic disorder and "typical" things we could expect to face along the way: needing open heart surgery, feeding tube support, learning delays, speech delays, and the list goes on and on. All of these things although overwhelming at the time to both of us, to me seemed very clear cut!
He can't eat? We will have to have a feeding tube put in for a bit.
He is delayed in his speech? We will have speech therapists work with him and get him the support he needs.
His heart has a murmur? We can endure open heart surgery!
It never occurred to either of us that this would be a life filled with trial and error, guess and check, positive and negative results, and us advocating for our son about even the smallest things. Having family members in the medical field: both grandpa's were veterinarians, I knew that their job was tough trying to treat sick animals. I know that medicine is about the process of elimination (and no offense to any of our friends/family members who are in the medical field), but the process of elimination sometimes SUCKS! And sometimes that process is a very slow process, that can take days, weeks, months, and even years. Months and years taken away that you can never get back again. This admission is already going on over a week trying to get Cohen back to where he was before he got sick and brought him in last Sunday. I've already seen two of our neighbors be checked in and out in one night, and we are still here! It has been a guess and check system that has created daily vomits, weight loss, and sleepless days/nights trying to figure out the best way to treat him.
It's never comforting when the doctors are asking us, "What do you suggest we do? What plans do you have?" This isn't the first time we've heard these remarks. It's dejavu all over again and it has been for the past 5 days! Since when was my name changed to Dr. Garcia? Yes, I have become quite knowledgeable in the hospital setting and have accrued many new medical terms, but I'm not in the hospital trying to solve why Cohen is sick. I know that part of those questions stems from trying to work with families to help care for their sick children, but honestly it's disheartening having that weight on your shoulders. If we suggest something and it goes wrong, then we are stuck living with that decision. If we decide something and it works, then great and suddenly we have more medical expertise than the doc. It's a daily battle we fight to determine if what choices/changes we make will affect Cohen and his overall well-being.
I remember going to the doctor when I was little with my mom and just being in the office for a few minutes after he saw me, I felt better and my mom was relieved. I never truly have gotten that feeling in my stomach yet since Cohen has been born. Last year in the hospital many "band-aids" were put on him to mask the problems that would arise but we never fully got answers. Now after 6 days in the hospital Cohen has finally stopped vomiting (crossing my fingers as I write this post and a feed is going) and is starting to tolerate his feeds again. WHY? Because of ME (and Ryan :), oh and our little guardian angel Kimberly P :)
Kimberly is a mom that I have mentioned before in my posts long ago who I reached out to when I first learned of Cohen's diagnosis. Her son also has 22q and he has lived a similar path to some extent as Cohen, but also has had some other struggles along the way. Having a sick and complicated child, she is a wealth of knowledge to us and has been each time we are hospitalized. She always offers suggestions and things to ask the doctors at rounds. She is always positive through everything her and her little guy have been through and it's inspiring. I remember her exact words to me when we had our fist conversation on the phone last July. "YOU have to be Cohen's ADVOCATE!" I didn't quite get what those words meant at the time, but each time being in the hospital has taught me the power of those words. An advocate is someone who is brave, confident, relentless, a problem solver, and headstrong. I cried to her on the phone about how I felt lost again in this whole process, how it didn't seem like the doctors knew what was wrong with him. Cohen was again in the hospital and the one that was "puzzling" the doctors. There was never an easy fix for him, never a one night stay in the hospital.
On Friday morning before rounds when the attending doctor admitted she was "Puzzled" by him, I suggested a few things:
1. They could stick to our current feeding schedule and not push him so much, like we had suggested a few days ago at rounds.
2. They could get the GI team (other docs that we haven't seen before) to weigh in on what they thought since our current GI is not an on-call one and hasn't been in to see him.
3. We could consider increasing his calories and that would help decrease his quantity.
The attending GI docs stopped by on Friday morning and suggested a new plan that we be aggressive with Cohen's current motility medicine and try to knock this out by increasing the dosage from 0.25mls 3x/day to 0.6mls 4x/day! Thank god they didn't think he would have to return to the GJ tube since they felt his motility was completely out of whack due to being sick 3 times in the last 2 months. After those suggestions were made, it only took about one day and we have noticed a huge improvement in how much Cohen was vomiting. We went from having to clean him and the bed up 5-10x/day to NOT AT ALL! Not sure when we will get home (I don't even ask anymore), but as long as he continues down this path, I think we are headed in the right direction.
It's exhausting being an advocate for your child and going to bed every night researching and thinking about what the plan should be in the morning. Making a list of questions to ask during rounds and things to try is a ritual to us now. But no matter how exhausted we are, there is nothing that would make us stop advocating for him. He relies on us to do it!