A Close Shave

Surgery Day

04: 33 am: get up, showered and dressed, make sure everything is ready for Evan for the day
05: 14 am: Kyle wakes up and watches tv and begs for food.
05: 38 am: wake up Aiden, change diapers, give blessings, get in the car.
05:56 am: pick up Mammi.

06: 22 am: walk into hospital. Wait to register.
06: 43 am: go upstairs to surgical floor.
06: 55 am: change into hospital garb, meet several nurses, do physical exam, give Aiden medicine, sign my life away while Kyle watches Yo Gabba Gabba on Mammi's iPhone.

07:34 am: walk with anesthesiologist to the red line in the floor, hand over Aiden to go back to surgery.
07: 41 am: say hi to Dr. Mizell and let him know that the one day I couldn't get the kids to poop, was the previous day Clean Out Day even with miralax. Told him we did an enema on Kyle (during which Kyle was laughing) and a glycerin suppository on Aiden the night before. Kyle plays in a coupe car--such cool toys in the waiting room.

07: 45 am: child life came out and brought Kyle a doll to use some medical supplies on.
07:55 am: Kyle was given a drug to make him a little loopy and hopefully sleepy so he wouldn't be so upset at the seperation.
08:10 am: Kyle got silly and was just laughing for no reason, then he began to shove me and laugh for no reason. It was hysterical.
08: 22 am: doctor came and talked to me about Aiden. There was irritation every where he looked. The pictures look bad. We will need to wait for patho to get back to us with the results of the samples. He also found a foreign object that looks like a bead??? What the heck???
08:25 am: Kyle was taken back while I was talking to the doctor. Then Mammi headed over to recovery to be with Aiden.
08: 35 am: went to be with Aiden in post op. Realized my old visiting teachee is our nurse. He almost ripped the slushie out of my hands trying desperately to put his whole mouth in the cup.
09: 04 am: Aiden is discharged and we wait for Kyle. Aiden is super sleepy.

09:18 am: Kyle came out of the OR into recovery. He threw up, stirred, was moved to post op
09:33 am: I spoke with the doctor. All of Kyle looks pretty normal. The stomach sphincter lacks muscle tone just like Aiden's. We'll need to wait for the biopsies to see if any of his eosinophil levels have changed (the whole reason to do it) or his marsh rating (relates to celiac disease). But we have no other procedures we can do for him so from now on it will be controlling pain, appetite and bloating with medication.
10:12 am: Kyle woke up, and so did Aiden from his nap on Mammi. We had 1 1/2 purple slushies and some graham crackers. Aiden played in Kyle's crib.

10:45 am: loaded kids in the car and left the hospital
11:23 am: walked into our house and ate lunch
11:47 am: went out to the swings to swing and crawl around
12:10 pm: Aiden laid down for a nap and Kyle watched a movie

Since then, we've just been laying low. Both have had several bloody diapers (totally normal--he took LOTS of tissue samples). We've eaten a lot and as of right now, Aiden has been sleeping for 3 1/2 hours and Kyle has slept none. But they are still in their pajamas :)

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.

Patients

Patient A:

Symptoms: over a month of diarrhea, skin irritated on his bum to the point of bleeding, inability to tolerate soy drink, inability to tolerate milk, displaying signs of pain over the course of several weeks, and increase in reflux akin to vomiting.
Onset of Symptoms: July 5th, 2011
Diagnosis: UNKNOWN
Course of Treatment: stool sample, blood draw, sweat test for CF***
Previous Course of Treatment: put back on Alimentum specialty soy free and dairy free formula. Will move to almond, rice or coconut milk combined with calcium and vitamin supplements.

Patient B:

Symptoms: lack of appetite, distension of abdomen, pain sending us to the ER Saturday night, continue of diarrhea, continued inability to tolerate milk.
Onset of Symptoms: June 19th, 2010
Diagnosis: UNKNOWN, but positive for high amount of eosinophils in stomach and colon.
Treatment Plan: sweat test for CF***, small bowel barium follow thru, a new medication to stimulate appetite. Depending on the way the tests work out, after 3rd birthday will start gluten free diet on top of the diary free diet.
Previous Course of Treatment: biopsy, colonoscopy, endoscopy, celiac blood test negative, negative for IgE, negative for antigens for celiac, negative for food allergy scratch test, no excess fat or sugar in stool, no excess of sugars that ferment and cause gas in bowels, no reaction to steroids, no reaction to anti-histamine also used for appetite stimulant, uses antacids, used antibiotics to rule out giardia, C dif, and cryptosporidium, been on a diary free soy free diet, and then moved to just dairy free.

***To see an explanation of CF, click here. We did the sweat test today, which is what the pictures are from. Both Kyle and Aiden had on each arm, two metal conductors attached for 5 minutes running an electrical current over an area treated with a chemical. It is designed to stimulate the sweat glands. Then a pre-weighed sterile piece of gauze was placed on the site, wrapped in two layers of saran wrap, then a layer of dinosaur coban, followed by a heat pack taped around both arms. On top of this, the hospital had me cloth them in long pants, a sweatshirt, and then a winter coat. There were two hoods on each child and one pair of socks. We were to take them around and encourage movement for 30 minutes. After the gauze was removed and weighed to make sure we had enough sweat to perform the analysis. We did not have to go thru the test again because they both produced enough sweat. Thank goodness. They are testing for high amounts of sodium chloride in the sweat, which is an indicator of most common mutations of CF. There are several mutations of CF.

It was upsetting to my boys because they were unable to hold their loves or suck their finger/thumb to comfort them during the electrical current. They were restrained and although none of the test is painful, the current does cause a tingling sensation like an appendage falling asleep. We will get the results tomorrow.


P.S. This is Aiden trying to crawl with his arms wrapped, a sweater, and a winter coat. We were only following orders trying to promote movement and sweat. Click to see the face in full effect---and don't feel bad about laughing, we sure did. Disclaimer: no babies were hurt in the making of this post.

Yearly Photo Shoot