Edible Brain

Evan woke up this morning and told me about this crazy dream he had:

Evan had to have a brain operation to look at his brain. He had other people urging him to get it done, "because he could waste his mind if he didn't have it looked at." The surgeon cut his head open and placed slices of his brain onto what were like jello molds to look at the deterioration. Evan and I were only dating at the time and he was worried that I wouldn't stay with him if I knew. He came downstairs after the operation and brought me the molds. I proceeded to eat his brain. And his first thought was, "wow! she really isn't leaving."

When he told me this, my first though was, "oh my gross, I would never. That is so disgusting."


P.S. Kyle surgery is scheduled for November 18th. It will require that he be in the hospital overnight at least to make sure that the port is working correctly. I have to take a class up at Primary's before hand to make sure that I know what I am doing in cleaning, feeding, and changing the tube. I read the whole folder that the doctor sent me home with--I'm completely freaked out and I'm not sure that I can do this. It just seems so intensive and awful. If the tube comes out, I have 20-30 minutes to insert a new one before the hole can shrink too much. I have to carry an emergency kit wherever he goes. Talk about scary.

Loan Sharks

This is the conversation that I had in the car with Kyle while we were waiting at a stop light on 4500 S and State Street.

Kyle: Is that a temple?
Me: Where?
K: (pointing) There. That white part.
M: (realized it was the Check City sign). No.
K: Yes!
M: No!
K: What is it?
M: It is a city scape. A picture of a city.
K: Why?
M: Well, the name of the store is Check City. So there is a picture of a city on their sign. Check City. Picture of city.
K: What do they have inside.
M: It is a loan company. They are loan sharks (saying that for the benefit of Evan who would be disappointed if I did not say something. He seethes over these types of companies).
K: (awe in his voice) They have sharks swimming inside.
M: No, they have unethical lending practices (again channeling Evan).
K: They have guys swimming around to get the sharks and like at Target (I thought he was referring to store)
M: (resigned, knowing this is going nowhere) Sure.
K: And we don't have things to shoot them.
M: No.
K: They need some like the wii (referring to a bow and arrow from our archery game on the wii, which he calls target and has no shooting under water at all, let alone at sharks).
M: Yup.



This is fairly typical of how things go; temple to sharks to bows and arrows. And the final thought of the day--I hate the combination of children and suckers.

Giant Nutshell

I know that it has been awhile since my last real post. I'd like to give Patty a shout out, because even though she moved to California almost two years ago (really has it been that long???) and I'm not a great blogger, she still checks our blog and is a faithful reader.

As an explanation, I buzzed my head because of constant pressure from Evan to shave it. Buzzing ti was as close as I wanted to come. During a drive to my friend's house, I was struck with the desire. So we did it. I even had someone at church, who I don't know, ask me if it was about fashion or about my health. Seriously??? It is really neither. Within a few weeks (like two), it had grown quite a considerable amount and now I need to decide if I want to do it again or grow it back out. Honestly, I might grow it because it is slowly inching toward freezing temps here and that will be cold on my bare head :) Any thoughts?

Honestly, I haven't taken a single picture since Kyle's third birthday (the pictures of my hair Evan took) and I obviously haven't posted. I have things that I could write and plenty of pictures of events---because lets face it even when I was posting at least once a week, I wasn't keeping up. But I have no desire to take pictures. None. I took no pictures while my mom was here. I don't even think about picking up the camera. Even less than taking pictures, I don't want to blog.

Things are rolling around here. Rolling around and down a hill.

Aiden is no longer a baby, he is a toddler. Walking everywhere, communicating in grunts and points, demanding, screaming, smart and determined. He no longer rolls with the punches. He also got his first hair cut. He brings me dress ups to put on him, is obsessed with the can opener, and brings me novels off the shelf. He can take toys up and down the stairs with him and tries to get things out of his crib. He plays with the kitchen toys even more than Kyle does and brings me plates and pots of "food."

Kyle is into the why phase of life. Why does it get dark? Why is it cold? Why is that screen red? He asks what. What is his name? What is he carrying? What are we going to do then? He makes all kinds of connections. I have a dinosaur shirt. We don't have this toy at home. That is the way to mammi's house. Daddy's school is in the mountains. He is also demanding and if I don't know the answer he responds with, "NO! NO!" and repeats the question like I'll get it then. Kyle also responds like that if I don't answer his question how he wants me to. He is a never ending source of chatter. He is causing me to lose my mind. Because if it isn't done his way at his speed when he wants it, then heaven help us. I have never said the phrase, "I don't want to ask you more than once." In my whole life. God help us. Literally.

The only relief comes each day after lunch. Quiet time. In order for Aiden to get what he needs from a nap and Kyle too. Kyle watches a "show" quietly in my bed while Aiden sleeps in his crib. Kyle will fall asleep but it takes awhile of forced inactivity in a bed and lasts just 45 minutes followed by another 20 minutes of laying there until he is no longer grumpy. But he won't do quiet time without me---"Mommy come lay with me." "Mommy, put your book down (I only like to watch his kids shows once---we watch them over and over and over and over, sometimes he even has me start them over) and snuggle with me." So we snuggle and inevitably I fall asleep before he does. But he is warm and holds my hand, I stroke his leg, and the top of our heads are tilted until they touch.

We are also in the throws of struggle. Hard core, I might not survive struggle. Where you hit your knees (at least in your mind) several times an hour. This time rivals when we didn't have a car for six months, I was sick with my gallbladder and on percoset and pregnant, and Evan was working 70 hours a week and walking across town to work. Not kidding.

Medically (which is only part of it), we got a diagnosis of eosinophilic endocolitis. Both boys. No cure and no concrete treatment plan. We can try elimination diets to see if that helps but we are going to focus on (1) maintaining growth, (2) managing pain, and (3) managing inflammation and distention of the stomach. Kyle is now on a drug to help him sleep--at three. We have tried the only two appetite stimulants out there, without success. One showed not much success, the other the side effects were too severe.

On Monday, our GI doctor informed us that he is setting us up for a consultation with a surgeon for Kyle to receive a g-tube, which is a tube inserted directly into his stomach thru his abdomen so we can feed him without food having to be eaten orally. It would be for about a year until he can learn to support his growth through his own eating. The appointment is for Friday at 11:30. I'll keep you posted, maybe. It took some research and convincing to get Evan, including several calls to other physician friends. There has also been some intense aggressive backlash from family. That makes a tough situation almost intolerable--it also breeds a quick growing, loud scream of doubt.

Evan gave me a blessing, part of it that really stuck, mentioned I need to have courage to stick firm and stand up. Honestly, I have no idea if I can do it. The place to stand is like a crumbling precipice and I feel like I've been standing for months in a blizzard. My muscles feel like they just might give from sheer exhaustion.

We did one month of gluten free on top of our dairy free. And can I just praise my friend Kirsten? My hero. She is a full time mom of kids my boys' age. She is also a full time student, as is her husband. She spends 12 hours in the library at a time. And she eats a gluten free diet. She and my other friend Sarah (who has a cute chub of a one year old, amazing photography skills, a vagabond lifestyle and a full time job) were my constant text friends to answer all my questions and lead me to good decisions. Controlling the gluten in our house was simple, although we did give up pasta for a month. It was outside--at play dates, restaurants, nursery and family dinners. Several restaurants had no idea what was in their food, or only had allergy information online not in stores---in this day and age that is ridiculous! One store had great packaged gluten free options--like cookies, crackers, pretzels and chicken nuggets (a staple for Kyle), but lacked in basics like baking supplies and alternative pastas, which I had to find at another store. Then there were our regular groceries.

We finished and after a week back on gluten, I'm fairly certain Aiden needs to be on that diet. We will be doing another two weeks of gluten free for him, which I was going to postpone until after Kyle's g-tube decisions, but after several hours of painful screaming last night with no cause in sight, that will be pushed up. We'll try him off of gluten for another two week and bring him back on. If this happens again (blow out diapers at night, frequent lose stools, yeast rashes, and fussy painful crying), we'll know for sure that Aiden needs gluten free and dairy free for good. Kyle however, is fine.

So I think I caught you up in a nutshell, although not a small nutshell :) Oh P.S. The best thing in my life is my friend, Charity, posted on pinterest a link about how to keep your house clean in 15 minutes a day. I started last week and oh, holy, hannah, hallelujah . I love it and it is working. How is it that keeping my house clean--something I've never been able to do--is the only thing I am doing well now that everything else is beyond my grasp.

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.