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.

Thursday, August 18, 2011


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.

Monday, August 8, 2011

Yearly Photo Shoot

Undersharing and the Inability to Move On

Recently, I've read quite a few posts and ensuing discussions on how much we share on blogs and why. As much as it probably seems that I share quite a bit, I hold back most of what I want to share. Since this has become my only source of journaling and writing, that has not been the best decision ever. I don't share because many of you don't know me that well, or don't know this about me--we became friends thru Evan. I don't share because some of you know my sister. I don't share because I think my sister-in-law reads this blog sometimes. I don't share because I know some of you in "real" life. I don't share because my husband reads my blog. I don't share because my mind is a dark and scary place and I do everything in my power to escape it at all times. I don't share because I want friends and acceptance. I don't share because, as hard as it is to believe, I don't want to offend. I don't share because sometimes I don't want to talk about it, I just want to write it and pretend it doesn't exist. I don't share because people don't agree with me. I don't share because what could anyone say?

But something happened last night at 11:27 pm. I stumbled across my brother's status update on Facebook and his wife's comment.

Kelly: "incompatibility of temperament has caused the irremediable breakdown of our marriage" is a hard statement to sign your name to...especially when your 'pattern of behavior' is partly the military lifestyle.
Sarah: You have been very gracious, Kelly. I am so grateful that you can peacefully let me go and that we can keep our lines of communication open. I wish you well.

So after some Facebook stalking, the only interaction I have with 99% of my family, I realized that Kelly was getting a divorce from his wife of 4 years. While this is nothing new in our society and nothing new in my family, I have been devastated. Not because he is getting a divorce, which is terribly sad. I really liked the 1 hour I spent with his wife. But mostly because this is the death of my hope of ever seeing Kelly again. The last time I saw Kelly, I was 13. He came with the current caseworker to my boarding school for the closing ceremonies of the year. That was over 13 years ago. More time has passed since I last saw my brother than my whole life with him. There was a phone call when I was 15 where he told me that I would never change and that I would never succeed. I didn't deserve a chance or a family.

But Sarah, his wife. I met her just a few years ago, the Thanksgiving after Kyle was born. It was in a small diner by the airport on her layover to go see Kelly, who is in the air force and was in training. I missed an opportunity to see her again at Christmas while we were all in Portland, a decision purely made to keep peace in my family. I felt hope because she had hope. She wanted to know me. She wanted to know about our childhood. She held Kyle. I have a picture with her.

Now she'll go. He won't be any closer to talking to me. He friended me on Facebook, but he won't respond to comments or emails. He won't return my calls when I tell him about being pregnant with his nephews or when they are born. He doesn't respond to Christmas cards. It is almost torturous to feel close because I can hear his thoughts and view pictures on Facebook and yet, he's gone. There was no graduation announcement, no wedding invitation, all I know I have learned from Facebook. I don't exist.

I wish that it was just him that I don't exist for, but that is not the case. Kelly is Facebook friends with cousins that we've never been close to, he is friends with a brother who won't even friend me on Facebook. That brother, Cory, is also Facebook friends with cousins we have never been close to. I haven't seen Cory since I was 12, it was a birthday party for Heidi. There was a story in the newspaper when I was in high school about him and his high school crew team. There was gossip passed on from others, particularly my sister who spoke with his foster family. There have been two phone calls the last 10 years ago, where he said he doesn't think of me ever, I'm not his family, and he wants me to never contact him again.

I'm not supposed to speak of these things with my family. No one understands how I feel about these things. How I feel the same way I did when I was 3, 7, 15 (pretty much any age). When I was alone, scared, confused, and no one would talk to me truthfully. It is the same now, except that I am told, "We just need to move forward from here," or "What good will it do?" or "I don't remember." I can't, but instead I am locked in this limbo. The older I get, the more "normal" I look with kids and a husband. Living life. No one knows these things about me because no one knew me back when these things were obvious in my life--try to hide lesbian foster parents when all your friends are LDS or how you don't go home for Christmas in college.

For me the rejection and the hurt haven't diminished over time. Instead, I get better at hiding it. I get better at hiding in my "normal" LDS life. I slip into the mold. I work hard to please people so I can have friends. Every time my mother makes it clear that although she loves me there are more important people in her life and even the beach vacations are more important, I hide the feelings quickly away.

Last year, I met my uncle and his wife. I hadn't seen that uncle since I was 3 years old because of my parent's decisions. It had been 23 years. He told me that if he and his first wife had known what was happening in my family 23 yeas ago, he would have taken me and all my siblings. I would have had a family and known my siblings, and yet I have never uttered those words that he told me to anyone. I could have bypassed 33 foster homes, 2 group homes, and a boarding school. How do I even mourn what that knowledge does? Who would I discuss this with? I'm supposed to build my relationships with them from here. No one wants to discuss those possibilities with me and while it may be painful, I don't think moving on is always the answer.

So here we sit. Kelly is in Texas. I am in Utah. I can't comfort him. I can't offer my condolences. I can't invite him for dinner. I don't exist. I'm one of hundreds of friends that he has. I blend into the background. He'll will most likely never know my husband or children. We will never know each other as adults. That hurts.