My Hero ....

I never thought 21 days ago that a simple medical procedure would wreak as much havoc on my family's life.  In fact, I hate to admit, but I was looking forward for this endoscopy to be performed on my son in hopes that we could get some answers to why he shutdown when it came to eating.  We still really don't have an answer, maybe he has a gluten allergy?  Time will only tell.

The ironic thing is that after the doctor went through the risks of the procedure, risks that rarely ever happen based on past statistics, my husband says with tongue in cheek - "yeah that'll be our luck".  Sure as you know it, it did happen to our son.  In the duodenum (upper portion of the small intestine) where a biopsy was taken, my son developed a hematoma.  The hematoma was so large, it blocked his ability to digest food beyond the stomach.  Unfortunately, this type of "injury" takes 2-3 weeks to heal enough for food and gastric secretions to pass through.  That was my son's case.

I'm a type of person that has to know "why".  So I'll research things.  I'm sure I drive my child's doctors nuts, but I have to know things.  So when this all happened, I hopped on the internet and "Googled" endoscopy and Noonan Syndrome and what do I discover, but a medical case report about an adult male with Noonan's who had pretty much the same exact issue post endoscopy with biopsy complication as my son did.  Interesting enough, the only other time such a problem happened in the practice my son goes to for his G/I issues was a child that could have been a clone of my son.  A two year old little boy with Noonan Syndrome, refluxer from birth and stopped eating.  So this is all very interesting to me.  I didn't look this information up because I wanted to place blame, it was because with Noonan Syndrome there are so many other complicating medical circumstances that I want to make sure that we haven't missed a problem that needs to be addressed.  One thing we really haven't done was have a complete hematological work up.  Mostly because my son hasn't presented any "blood disorder" symptoms to date.  After reading a few articles on such hematoma's post endoscopy biopsies, there is a pretty strong link between people with bleeding disorders and the complication my child had.  So now the "mommy radar" is pointing towards a possible mild blood disorder.  When he was in the hospital, they did do a small blood panel work up for possible blood disorders. All but one area pointed to everything being "normal" with the exception of his platelet function.  His platelet function was a little abnormal.  Not earth shattering abnormal, but it wasn't "normal".  Now given that my child lost a lot of blood and his blood count was very low and he was very anemic, the results of the platelet function testing could be skewed - so its  a test that will need to be redone when my child has built up his own "blood supply" and can withstand a full hematological work-up.  If I was a betting person, given the results of what happened with the endoscopy biopsy procedure, and the fact that he has Noonan Syndrome and abnormal platelet function is also seen in many people with Noonan Syndrome - this is probably the cause of why he had this adverse reaction to the endoscopy biopsy.  So I'm really interested in finding out the results several months from now to see if I put the pieces of the puzzle together correctly.  I know my son's G/I doctor is going to be researching this very topic as well and will write up a case report.  She promised to keep us informed of what she and her colleagues find.

I can tell you, I hope no other person has to go through such a complication.  Witnessing it first hand was really heart-wrenching.  There was a point where I thought I was going to lose my child - he was very very sick.  I was very scared and if it wasn't for a couple of good nurses, my husband and sister - I'm not sure I would have survived the first 36 hours of this ordeal - and I wasn't the person feeling bad - my son was.  He is my HERO - to be able to endure the first couple of days of this complication and still be the sweet, lovable, little boy that he is shows me how strong a person he is.  He vomited for 36 straight hours, he was x-rayed a half a dozen times, he had to do an upper G/I study and drink a substrate that increased the volume of fluids pooling in his stomach causing him to vomit even more.  He had an ultrasound of his very tender abdominal area.  He had a weekend full of twice a day blood draws, IVs were inserted and a surgical procedure to insert a PICC line for TPN feeds.  He had an N/G tube placed in through his nose to his belly.  He had a platelet and blood transfusion.  He had electrocardiogram stickers all over his chest and belly and lines coming out from all over the place.  He was just poked and prodded every way imaginable and he took it all like a CHAMP!

Not only did he take it like a champ, but he also managed to warm the hearts of so many people that were caring for him at the hospital.  He must have really captured the heart of one of the doctors, because on Sunday, the doctor stopped in with a special "Woody Buzz" gift for him, an Alien from Toy Story.  This doctor would come to visit every day bright and early in the morning and sometime in the early afternoon to check in on my son and play with him for a couple of minutes.  I come to find out that this doctor, a surgical resident, was doing something totally out of character of a "surgeon".  I can tell you that all the doctors that met my son had a great deal of compassion for my child, but I guess its really rare to have a surgeon "show" such compassion.  I knew there was a connection with my son the day he whispered in my son's ear "Donovan don't tell anyone this, but you are my favorite patient!"  Dr. JP will always hold a special place in my heart for being so warm and compassionate to my son.

I'm not so sure I'd be as strong as my little guy was - 19 days was a long time to be in the hospital.  To be two years old and understand that sometimes the medical staff had to do things that hurt so that they can make him feel better was just amazing to witness.   He truly did understand and he was a very cooperative patient, which is why when we left the hospital yesterday a team of all the doctors who rounded over the course of 19 days said goodbye and all the nurses and medical assistants and respiratory therapists had to give him a great big hug goodbye.

Donovan - you are my HERO!

I love you Boo!
Mom