Tuesday, November 5, 2013

More Hurdles

Gavin went to see his General Surgeon today for a pre-op visit.  We were expecting to schedule his pull-through procedure which would close his ostomy.  Cardiac anesthesia was on board to take his case in the OR and the PICU was ready to take Gavin in during recovery.

But, we recently received a diagnosis from Duke that said Gavin has severely obstructed sleep apnea.  We knew that translated to more attentive anesthesia care and ICU recovery after surgery, but that's all we were expecting.  Today, the surgeon halted surgery until Gavin has a consult with ENT.

Luckily, our surgeon had already spoke with doctors from the ENT clinic, so we have an appointment first thing in the morning.  If the ENT says Gavin's tonsils or adenoids need to come out, then that has to occur before his general surgery.  This way, his risks under prolonged anesthesia are mitigated.  That is an extra surgery we weren't expecting, and we definitely didn't expect anything to stand in the way of surgery this week.  But, at least the care is comprehensive.  So Gavin may still be in surgery this week, but just not the one we were expecting.  And as soon as he recovers from that one, he will be going in to have his ostomy closed.  That would make six surgeries for our little man.

It is nice to finally have a diagnosis that may explain his issues with anesthesia though.  His last three times under anesthesia at the Children's Hospital here, I have stressed and emphasized to anesthesiology that Gavin has issues coming off of the ventilator.  And every time I have been ignored and watched Gavin struggle to recover in the Post Anesthesia Care Unit.  Having this diagnosis helps the doctors listen, but at the same time, it makes me livid.

I understand to many doctors, that I am just a mom.  But I am a mom of a sick child.  A mom who knows how her son cries sound coming off the ventilator.  A mom who has had to hold oxygen to her son's face to stop him from de-sating.  A mom who has spent MONTHS in the hospital by her son's bed.  A mom who has seen cardiologists, general surgeons, audiologists, opthamologists, various ICU doctors, hospitalists and primary care physicians.  A mom who has seen great medical care and outright negligent patient care.  A mom who has sat in the waiting room for 8 hours while her son was in open heart surgery without positive expectations.  A mom who knows how many swallows her son can take on a bottle before choking.  A mom who knows how to place a feeding tube so her son can eat.  A mom who knows how to put her son's intestines back into his body.  So while doctors all of a sudden listen to a diagnosis such as severely obstructed sleep apnea, I, as a mom, have communicated the symptoms prior to a diagnosis.  He desats significantly in his sleep.  He breathes loudly.  He has cardiac and lung issues.  He spent 45 days on ventilators, CPAP machines, nasal cannulas and blow by oxygen.  He has been under anesthesia six times and exhibits the same symptoms coming out.  But, apparently, he has had to struggle because I'm just a mom.  What do I know? Now that there's a clinical diagnosis, people are bending over backward to do things right. 

Now, please understand that I am grateful for that.  But I am a mom of a sick child.  I expect doctors and nurses to listen to me when I say something is wrong with my child.  To listen when I advocate for my child and not outright ignore me.  This didn't start out as a rant, but there is a lot of frustration in my heart right now.  I feel like I should have fought harder than I have.  I feel justified in my anger and frustration towards anesthesiologists, but I also feel outrage at the fact that they treated me like I was just another mom.  Anesthesiologists only deal with my child for a moment and then they are gone from his care.

But they must understand what it means to be a mom of a sick child.  I have watched my child struggle for life.  I have watched him code.  I have spent days and nights by his ICU bed just praying he would open his eyes.  So yes, I am just a mom.  But I am a mom of a sick child.  Don't mess with my son, because I will take him to a hospital where anesthesiology does listen and does respond to his physical cues instead of treating him like another patient in the queue.  Because that care does exist.  I have experienced it with my son, and that is what makes substandard care so much more infuriating. 

I apologize for the long rant, but I do think it's important to share the struggles and the frustrations that come along with raising a sick child.  I do try to focus on the positive and stay upbeat. Our surgeons are wonderful, and this issue has only been with anesthesiology.  But I think, to understand why we are so grateful for the good times, it is important to note the struggles, fear, frustration and anger too. 

We could certainly use prayers for Gavin. November is going to be a big month for him with either one or two surgeries.  Hopefully, this new diagnosis will ensure him the care he needs and deserves.  The little guy is still growing strong and fighting hard.  No matter how mad or frustrated I get, his smile and his coos make everything better.  He always calms my heart no matter what struggle we are facing.