Saturday, April 11, 2015

I'm NOT a doctor!!

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!

Wednesday, April 8, 2015

One day short of a year!

It's April 8, 2015 and this post has been planned in my mind for over a few months now.  April 7 is a day of great importance in the Garcia household these days, but as I'll explain, I wasn't able to write that post.

We have been counting down the days on our calendar to a very important holiday: 1 year out of the hospital!  April 7, 2014 we were handed over our little warrior from the hands of the doctors and nurses one final time in hopes that this time he would remain healthy and at home. And he did.  He has grown, gained weight, matured, and created so many memories in the walls of our home that we were blessed to have experienced.  Isla has loved waking up every day to the squeal of her little brother and also being able to boss him around from time to time.  Even through the past two months with two very intense upper respiratory illnesses, he has been a champ hanging in there and remaining out of the hospital.

We had a great Easter and spent it with my in-laws in the burbs.  Cohen was in great spirits and dressed up for the occasion!

After returning back home, we started his first evening feed at 6pm and he went to sleep.  Ryan and I were relaxing on the couch watching tv, and digesting our Easter meal.  We ironically were talking about how in just 2 more days it would be 1 year that we had taken Cohen home from the hospital!  Little did we know, that anniversary would be cut short by 2 days.

By 7 pm he woke up vomiting.....this is a norm for him lately and we didn't think too much of it.  Usually if he's not tolerating a feed, he'll throw up and usually be ok, but this time was different.  Every 15 minutes he was waking up and vomiting.  GRAPHIC WARNING:  The vomiting got to the point that he started having green neon bile.  This was definitely a sign something was up.  I kept waiting to see if it would stop so I could try to give him some pedialyte but he was a mess.  We called his PED and "you have to take him in" rang through the phone into my ear.  NO, this couldn't be happening.  He couldn't just last two more days?  He has been able to stay home before with a 106 fever, but because he's vomiting we have to?  She said it would probably just be an overnight thing...but she apparently didn't recall the 17 weeks we spent in the hospital last year.  The 17 weeks we were ripped apart as a family.  I knew in my heart we had to go in too, but I also knew this probably wouldn't be a quick fix.  Cohen was vomiting every 5 minutes at this point, I didn't feel safe driving him there by myself worrying if he would need me to help him.  So we were able to get our amazing neighbor Kristen :) to come down and help us.  She stayed at our place while Ryan drove me and dropped me off at the ER.

We arrived at the ER by 10:30pm.  It was the barrage of questions again this time strictly about his gi issues and history. When was his gtube placed? Why was it changed to a gj tube?  When did he start vomiting? How many times did it come out green? For once we were focusing on vomit and not a respiratory rate!  I was a little relieved at that :)  He was vomiting non-stop and every time I put down the "puke bowl" for more than a  few minutes, it would start up again.  They took an x-ray of his belly to rule out any obstruction since he has been vomiting green.   They figured it may be a stomach flu and would put in an IV to give him anti-nausea meds and also start fluids to hopefully get him feeling better.  It was terrible watching them try 3 different times to get an IV in him. Being a baby before, really has it's benefits as I can recall watching Cohen smile when he used to get IV's put in.  Being as dehydrated as he was, his veins had shriveled up and it made his very small veins that much smaller.  Finally they were able to get one in his foot and once they did he seemed to start feeling much better.  He was so exhausted from all of the work he had done all evening and it being 12am, he passed out while sitting up in the hospital bed.  We were finally admitted to the hospital on our favorite floor: 21 at 3:00am.  Both of us exhausted, the nurses quickly took his vitals and we both went to sleep!

Being in the hospital this time around has its trade offs.  Last time Cohen was in a hospital he was only 5 months old and now being a 16 month old it becomes rather challenging to entertain a little toddler in a hospital bed.  He is limited at what he can do physically since he has an IV near his left ankle.  He cannot put weight on it, so he pretty much moves from lying down, to pulling up to a sit over and over again.  We have brought in some toys for him to play with and books to read but passing 3-4 hours of wakefulness in a hospital setting is much slower than doing it at home!  He is also unable to leave his room because he is "isolation" due to the fact that he is vomiting.  The perks of being a returning patient is everyone knows his name, our faces, and our story!  We had visitors the first day we were here and every day since.  It's those little 5 min windows of time where chatting with an old nurse or therapist helps make you feel like you are at home and not stuck in a 5x5 stark white room.  Everyone has been commenting on "how big" he is since some of them haven't seen him since he was 5 months old.  It's reassuring that even though he still struggles to gain weight and develop more slowly, he is making progress in the long run.

I stayed at the hospital through Monday afternoon when I switched out with Ryan to stay with Isla.  Now that he's older it is not even an option about leaving him at the hospital.  Watching him sit up in the hospital bed and looking at the door sends a pain right through my heart making it impossible to leave the little guy, even to run down the hall for a refill of my water mug.  On Tuesday afternoon I was hit violently with a stomach bug.....trying to take care of Isla while sitting in the fetal position and running to/from the bathroom was draining!  Ryan stayed at the hospital so I wouldn't infect Cohen.  In the middle of the night Isla woke up with the same thing and by 5 am Ryan was already rushing home in a cab about to hurl.  Luckily, my MIL Penny was able to take the day off work to stay in the hospital with our little guy. We all are nursing back to recovery as we speak.

So the focus of this stay is simply to hydrate him and get him to tolerate his feeds.  We have taken a HUGE step back as far as his feeds go.  At home he was able to tolerate 5 feeds/day each one 165mls over about an hour and a half.  Now we are trying to get him to tolerate 8 feeds/day each one 90mls  over an hour and a half.  His GI doctor thinks that with the combination of being sick two different times already and then getting knocked down with this stomach flu, it has really taken a toll on his motility.  His body is going to need some time to recuperate, much more time than the ordinary person and we need to take time with trying to gradually get him back to where he was before.

I just had to check on the little guy who has yet puked again.  Not sure how much more of this he can take and I can take getting covered in vomit.  The doctors want him to meet his caloric intake but at this point I'm asking to have a new plan.  I understand trying to make sure he doesn't lose too much weight, but at the same time watching him vomit every feed doesn't seem to be worth it in the long run.  I'm off to bed with heavy eyes and hopeful that tomorrow brings less vomit and more smiles from my little guy!