Monday, August 22, 2011

Small Bowel Follow Thru

We got really good new late last Friday--the boys do not have CF. Which is awesome considering that it is a fatal disease and it can be brutal. So I am very glad for that.

However, we are still without a diagnosis and waiting on results from Aiden's lab work (although F***ing Primary's lab gave ARUP a non-sterile stool sample, even though I asked for a cup, so I had to redo the collection, registration, and drop off AGAIN. I HATE Primary's with a passion---most of the staff are competent and nice enough although overly interested in my personal life, but the bureaucracy and how long it takes to get anything done is almost as bad as China. If I tell you who the pediatrician is one more time, I will have told every person who works at Primary's. I know they have a computer system and look up the boys--isn't it in there after 3 years because our address is? Down off my box now.)

As a mother, I am not overly worried, overly emotional, or overly coddling. I frequently ask my children to come to me if they are hurt and don't do more than ask if they are okay. Kyle always comes, tells me, "I hurt myself," "I'm fine," and goes to find his monkey. This isn't to say that I am heartless, just less touchy-feely. You can see that in how Kyle responds to people crying, "it's fine, Aiden, you okay." Sweet but authoritative, often with petting involved, a perfect mirror of me.

Over the years, we have experienced lots of medical procedures. Both boys have had upper GI x-rays with barium contrast at 2 weeks old and Kyle again at a year. I did not cry and neither did they. We have done multiple blood tests, suffered thru more bleeding diaper rashes than I would care to contemplate, vomiting, uncomfortable belly palpitations, strangers poking and prodding, and Kyle has had both an endoscopy and colonoscopy (requiring complete sedation in an OR). Last week, Kyle even had a finger shoved up his anus, no tears for either parent or child. Last ER visit, Kyle had a melt down over an x-ray, I had no reaction. Thru this all I had been tearless, worried and emotional, but no tears during any procedure.

Kyle and Aiden also behave as great patients, unafraid and very good at holding still, the medical world like stethoscope or exams are child's play to them. Kyle even refers to it as his hospital and Jenny's and Morgan's hospital. He asks to go and recognizes the drive. He thinks other places are hospitals and has no fear of doctors. He is polite and unafraid.

Today was different. Today was traumatic. Today out of this whole process, brought my to my knees. Today I wept openly and fervently. Today my child was held down by two nurses, me, and a doctor at his head while an n-g tube was forcefully shoved down his nose to administer barium which he was unable to drink. The first try resulting in a bloody tube. He thrashed, he kicked, he arched, he screamed, he cried, he yelled, "Mommy, I done!" I cried so uncontrollably. The thought of the memory still makes me cry. I could not utter words to even begin to comfort him. His thumb or monkey were of no consequence. No books, conversations about airplanes, or his birthday party were worthwhile. It was so horrific that words cannot describe---suffice it to say, the doctor and nurse asked if I wanted to step out so I would not have to witness the situation. I did not leave. We both survived. But I later found out, Kyle believed we were getting blood from him, and this is not because I didn't explain it to him.

Those two hours of that test, only 30 minutes involved the n-g tube, broke me as a parent. I'm not sure where to proceed from here.


Jenny Livingston said...

Just reading this made ME cry (which really shouldn't be surprising since I seem to cry at least once a day, but still...)

I've always said that I'm so grateful to be the one who is "sick" one because I honestly don't think I could watch Morgan go through anything like what you explained here. I don't know what to say except this sucks! And I hope they can give you answers soon, without needing to preform any more intrusive tests!

Love you guys.

Merry said...

Oh my. I am sorry that yesterday was so bad. That sounds really awful. I hope that things get better.

Teresa said...

I echo what Jenny said. I have always been grateful that it is me, not my kids, that has to deal with doctors, hospitals, etc. I can't imagine having to watch them go through what your boys have been through. I am so sorry and we are praying that you will have answers soon.

On a happier note, the birthday invitations were so cute! good job on them. We are going to try to be there for sure!

Tiffany said...

I'm sorry. We're not so strong about the doctor's at our house. However, I was wondering if you've ever been in to see Dr. Louis Mizell. He specializes in pediatric GI. He's a family friend and was my pediatrician when I was little.