Complications - The full story

I use this blog as a bit of a journal, so even though most of you already know the story I'm going to go ahead and type it out anyway.

Caden had his scope in biopsy on Friday, January 22. That day everything seemed fine and we felt good that the procedure had gone well.

Saturday morning Caden woke up grumpy. He didn't want to eat. He cried over everything. He was off balance and had skewed depth perception. We chalked all of that up to recovering from the procedure. He had a strange bowel movement around 10 am, cried non-stop for 4 hours, then had another bowel movement at 2 pm. That one was bloody and mucousy. I spent the next few hours holding and comforting Caden, frustrated that not 24 hours after the scope we were right back to where we started. Painful, mucousy, bloody stools. No answers.

Caden didn't nap, and wouldn't eat dinner. He cried through his entire bath, so I decided the kid was in pain and tired. It was time for bed. We read stories and I tucked him in, then started to nurse Eric. Caden was protesting being put to bed and kept screaming and crying. I figured he'd calm down and fall asleep within a few minutes. After about 3 minutes I heard him cough and thought, "Great, he worked himself up so much he threw up a little. I'll go take care of it after I finish nursing." (Yup, I'm a good mom like that. Ryan was tiling and was outside cleaning the cement of his tools at this point). Caden's cries continued to escalate, so after another minute I reconsidered, dropped a crying Eric into his crib, and went to check on Caden.

I found the kid, his doggy, his sheets, everything - covered in bloody vomit. I took him into the bathroom, stripped him down and rinsed him off. Trying to take stock of the situation I called my mom. "Is this normal?" "I don't think so. Call your doctor." I carried a still crying Caden down to the garage to get the doctor's number out of the car. In passing I said to Ryan, who was actively cleaning his tiling tools, "When you're done with that I could really use your help inside for a few minutes."

Seven minutes later when Ryan came inside I was still on hold with the hospital. Eric was still crying in his crib. Caden was sitting on my lap looking pale as a ghost and shaking. As Ryan walked down the hall to get Eric I called for him to check out Caden's bed. He came running into the family room, "Thats blood! And a lot of it!"

We called the neighbor over to help give Caden a blessing, then 20 minutes after he vomited we loaded the kids into the car and headed to Primary's, still trying to reach the GI doctor on call. About the time we got on the freeway the doctor came on the line and confirmed what we already knew - go to the ER, expect to be admitted overnight.

A blood test in the ER showed that Caden had lost 1/3 of his blood and many of his other levels were dangerously low. They flushed his stomach to see if there was any more blood in there - there wasn't. They started IV fluids and ordered a blood transfusion. Based on Caden's vitals and blood test results we were told we'd be moved into an in-patient room just as soon as one opened up. At that point we opted to send a tired Eric home with a tired Daddy. They left at 10:30.

When Ryan and Eric arrived home my parents were just leaving. They'd spent 4 hours cleaning up the mess we'd left on Caden's bed, and weren't entirely done yet. They managed to salvage doggy and all the sheets and blankets. The mattress will be forever stained, but is still usable.

By midnight we were still sitting in the ER. One of the nurses finally explained to me that Caden's levels were continuing to drop, so they were on the phone with the doctor trying to determine if he needed to go into the PICU (Pediatric Intensive Care Unit). He'd been borderline when he was admitted and I was really pushing to get assigned to the general floor. At 1:30 we finally got moved to the PICU, where they started the blood transfusion.

Ah, the blood transfusion. Somewhere in all our waiting it donned on me that Caden might have an allergic reaction to the blood. We asked the resident assigned to him, and sure enough, blood carries food proteins. The PICU team confirmed that he would probably react, but they expected the reaction to be mild. They pre-dosed him with a large amount of Benadryl, then started the blood. It took 4 hours to get the full unit into him, and he got a second dose of Benadryl halfway through. He made it through the transfusion without incident. By 6 am we'd had just 4 hours of sleep, interrupted by two finger prick blood draws and the dose of Benadryl.

At home, Ryan and Eric weren't getting much more sleep. Eric doesn't really sleep through the night yet, and he still nurses. When he woke up at 1:30 wanting to eat, Ryan attempted to give him rice cereal and rice milk. After much crying, both of them just gave up and went back to sleep. Eric fussed a little off and on through the rest of the night, but ultimately Ryan had to wake him up around 8 am to come back to the hospital.

Since Eric wasn't allowed in the PICU, Ryan took over with Caden and I took the little one to my parents' house. I fed him and put him back to sleep in a crib, then rejoined Ryan and Caden. Ryan's parents, sister, and brother in law came to visit. Caden really seemed to like having visitors. Poor kid was going stir crazy cooped up in the bed. He did figure out how to race his cars down the bed and developed a love for the movie Nemo.

Around noon Caden's status was officially downgraded from ICU to general admittance. We got to hang around the ICU for a few more hours anyway waiting for a room to open up. In that time I drove to Murray again to feed Eric and take a shower. When I got back to the hospital, Ryan took a break and went to his parents' place for dinner.

On the general admittance floor we were told once Caden could keep himself hydrated, keep food down, consistently have blood levels in the appropriate ranges, and produce 2 bowel movements we could go home. We ordered 'room service' for dinner and settled in. My parents came for a visit, bringing with them a treat from my sister who had been at home watching Eric the past few hours.

Since Ryan needed to go to school the next morning, we opted to send Eric to my parents' house for the night. The kid was an angel. He slept until 5:30, ate rice cereal without complaint, and went back to sleep until 9 am.

By Monday afternoon he had met all the criteria for release but the bowel movements. The doctors were wanting to check his stools for blood to make sure his internal bleeding had stopped. Since his numbers were holding so steady they decided the bleeding must have stopped and decided to discharge us, with instructions that we would likely see some blood in his first bowel movement as the colon cleared out but the second bowel movement should be back to normal.

He had his first bowel movement about an hour after leaving the hospital. Pure blood. The second bowel movement came that night around 7 pm. Pure blood again. We decided to wait to call the doctor until the next morning.

Tuesday morning the doctor said continued blood in the stools was indicative of continued bleeding, but that the bleeding should stop on its own. As long as it wasn't massive amounts of blood Caden should be fine and there wasn't much that could be done for him at the hospital. We were just supposed to watch him, and return to the ER if he started vomiting the blood again.

Today is Thursday, and the bleeding appears to have stopped. Caden is still a little lethargic, pale, and whiny, but we think he's on the mend. We are grateful for amazing staff at Primary Childrens and the support of family.

Spam!

Yes, they do still sell the stuff. Its also Caden's meat of choice most days. A while back as I was cutting the spam brick into smaller slices I was pulled away from the kitchen by a neighbor at the door. Caden reached up to the counter and grabbed this chunck of spam and started running around the house giggling and gnawing on it. When I tried to take it away and give him a smaller slice he broke into tears, exclaiming, "Caden want the big Spam! Big Spam is tasty!"

Cryptogenic Eosinophilic Colitis and Esophagitis (EC and EE for short)

That is Caden’s newest diagnosis. I spoke with his GI doctor at length today. The biopsy results came back positive for eosinophils in both his colon and esophagus. A reading of 4-6 is somewhat normal, a reading of 20+ is enough to diagnose the disease. Caden was a 25 in his esophagus and a 45 in his colon. The disease is classified as cryptogenic because the scope showed no inflammation but the biopsies were positive (hence, its cryptic, or hidden).

The treatment for now is Prednazone, a steroid. We’ll talk with the doctor and adjust his dosage weekly. We’ll give that 3-6 months to work. If that doesn’t clear up his digestive issues we’ll have to go to more extreme measures. We’re really hoping the steroids work.

This is a disease related to food allergies. Some food in Caden’s diet aggravates the eosinophils causing the pain he has when he has a bowel movement. We’re also going to be trying to figure out which food is the problem, but its all trial and error.

For more information you can read http://www.apfed.org/egid.htm

In related news, his internal bleeding hasn’t completely stopped. Its slowed enough the doctor didn’t think we need to go back to Primary’s, but we will continue to watch him and will likely take him in for a blood test tomorrow to check his levels.

Perspective

Saturday night we took Caden to the ER due to complications from his scope. We spent the better part of Sunday in the ICU. We spent the better part of Monday on the general admittance floor. Tonight we're all home snug in our own beds.

Saturday night my friend went into labor with her 3rd child. Sunday morning the baby was life flighted to Primary Childrens Hospital. She spent the better part of Monday grieving her loss. Tonight she's in a maternity ward recovering from a C-section with no little baby to hold.

Our crazy weekend just doesn't seem so crazy anymore.

Caden's Scope

Caden did amazingly well yesterday with the liquid diet. He opted not to eat rather than have the jello, broth, or juice I was offering, but he didn't cry too much. He'd politely ask for food, and walk away dejected when I turned him down. We had a few meltdowns while he was sitting at the table, but they were short lived and ended as soon as I got him down. As long as we were playing with him he stayed pretty happy. We were concerned he wasn't drinking enough to clear out properly, but the doctor said he looked great. I'm sure this was the result of the many prayers offered on his behalf.

Caden was a gem at the hospital. I think he was just too tired, weak, and sick to resist. That, and the staff at Primary Children's Hospital is just so well trained. The nurses blew bubbles while taking his stats and checking him in, he rode in a wagon from room to room, there were toys behind every turn. We are so grateful to have such a wonderful facility nearby.

When he was coming out of the anesthesia all he wanted was water and food. As soon as he got a spoon in his hand he wouldn't let go of it. He knew he could eat again and he wanted food! We could tell he was starting to feel better when he got back to his normal chatty self. He told his nurse all about his cars and trains.

As for results, basically they didn't find anything. The doctor took biopsies and we'll get those results on Wednesday, but the colon wasn't inflamed and is formed properly for the most part. Its a little long and has a loop in it, but that shouldn't be causing the problems he is having. We'll get the results from the biopsies on Wednesday, but since he wasn't inflamed its unlikely they'll find the eosinophils we suspected were there.

In some ways its so nice to have ruled out some pretty major problems. On the other hand, we still don't know whats wrong with our little boy. I guess when we go over the biopsy results with the doctor on Wednesday we'll know better what our options are from here.

Caden Hiding

"Mommy, Mommy! Caden Hiding! Where he go? I doe know. (giggle, giggle) I'm back!" Repeat about 100 times.

So close

We almost made the front page of the newspaper. Although that looks like our family, the caption says its the Schervel family. They must be from some parallel universe. That must be it, because our family would never go out in public in our Saturday work clothes and without doing our hair.

If you want to see a close up of the picture or read the article about the importance of Amber Alert ID's (we aren't mentioned), you can click here.

Hooray!

Ahh, the optimism of youth. In the past two weeks I've heard:

"Hooray! Baby Eric awake!"
"Hooray! Tummy time!"
"Hooray! Garbage truck!"
"Hooray! Sunbutter!" (Between every single bite)
"Hooray! Errands!"
"Hooray! Shopping cart!"
"Hooray! Fix a tire!" (We stop to put air in my tire on a regular basis)
"Hooray! Um... this place!" (When he didn't recognize the errand we were running)

Yup. He's even excited when he doesn't know what we're doing.

Loving the Jumper

Did you miss this video of Eric in his jumper? I was worried it may have been lost in all the long wordy posts that week. He's stll loving it, and Caden has gotten better about not trying to 'help baby swing.'

When we first got the jumper out Caden decided he wanted a turn. It didn't take long for him to decide otherwise. Being stuck is no fun.

Mug Shots

Last Saturday we went to the local rec center for a fitness fair. While there we got the boys registered with Amber Alert IDs. Their information is now in the system and if anyone ever takes them the police can issue the alert sooner. One lady who was helping said the pictures were so that "people can see your cute kids and help look for them." Do you see our pictures? I sure hope people will want to help look for our kids, and that the cops don't confuse our Caden for the bad guy.

We also saw the tumbling (cheer/gymnastics) demonstration while we were there. Caden was fascinated and his new favorite thing is to do somersaults, the exclaim "I did it!" with both hands high in the air.

Back to School

Ryan got looking at his schooling last Saturday and realized he was much closer to finishing a degree than he originally thought. So we scrambled around, got him registered for classes, and yesterday was his first day back in over 4 years. He is most excited about his Basic Metal Sculpting class. Someone decided that learning various welding techniques qualifies as a Fine Arts credit and Ryan jumped on it. He said the shop at school is every welder's dream.

Eric's First Big Reaction

I got the phone call while in a meeting at work last night. When Ryan called the 3rd time I decided to answer.

"Um, I did something wrong. I gave baby Eric milk."

My heart dropped. "Do you need to know where the Epi-pen is?"

"No, I found the Benadryl and gave him some of that. He seems okay. Just rashed and swollen."

"Do I need to come home?"

"No, I think I have things under control now."

Thirty minutes later I called as I walked out of the office.

"How is he?"

"Well, he's not getting any worse, but he's not getting any better."

"Give him more Benadryl."

"I've already given him 4 times the dose for his weight."

"Give him more anyway. Thats what the allergist had me do when Caden reacted."

"He was scratching at the rash, so I've slathered his head in Cortisone cream a few times."

"Good idea. I'll be home in 20 minutes."

By the time I got home the second dose of Benadryl had kicked in. Eric was doing much better, but still looked pretty sad. Ryan filled me in on the whole story. I'd left both boys home while I went to Provo for a meeting. I'd be gone just 2 hours and we figured Ryan could feed Eric rice cereal if he got hungry. He loved the cereal, but was coughing just a bit so Ryan decided he needed a drink to wash it down. Eric wasn't a fan of the water, or the sugar water. Resourceful Ryan decided to try a little bit of 2% milk, warmed up in a sippy cup. The milk was a winner and Eric began to gulp it down. Less than a minute into drinking it, Ryan noticed a rash starting to form around his mouth. That was the beginning of the 'uh-oh.' Then Eric began to scream. Ran started calling me and hunting for medicine. Once he found and administered the Benadryl he did what any dad would do - started a photo shoot. :)

Eric hadn't been reacting to milk through my milk, and he'd tested negative. We really thought we were in the clear on that one. Ryan doesn't have much experience with little kids. He didn't know you don't give any child under the age of 1 milk, he just knew we didn't give it to Caden because he was allergic. He figured since there was no allergy the milk wouldn't be a problem. We're back on hyper vigilance as we SLOWLY introduce solids.

Allergy Follow Up

I took the boys back to the allergist yesterday as a follow up to our appointment in October. There wasn't much good news.

Eric - Allergic to corn, wheat, eggs, soy, fish, peanuts, tree nuts. I was given the okay to slowly start him on solids, with slow being the operative word. We're supposed to wait 2 full weeks between the introduction of new foods. At this rate he'll have about 12 foods he can eat by the time he turns 1. We'll go back for another follow up around that time as well.

Caden - Neither the soy or the rice seemed to be the problem, so now he needs to have his GI tract scoped and biopsied. I've already set up an appointment with the GI doctor for this upcoming Monday. As we were leaving the allergist threw out that I might consider pulling tomatoes from his diet to see what that does. I'm thinking I'll do that after the scope.

So what was the good news? The type of allergies Eric has are typically outgrown very quickly. The allergist said if he weren't Caden's brother he'd expect the allergies would be outgrown within a year, but given Caden's history he's thinking more 2-3 years. And for Caden, at the last appointment I realized Caden is allergic to gluten and not just to all the grains that contain gluten. I've worried ever since that meant he was Celaic, a disease that can't be outgrown. The allergist said a gluten allergy is different than Celiac, so there is still a possibility he will outgrow it. Cooking gluten free is my biggest challenge related to the allergies, so you have no idea how happy the hope of getting gluten/grains back makes me.

Poisoned

Yesterday morning around 10 am I noticed a funny smell in the kitchen. It was really strong and made me nauseous. I tracked it to the front burner of our stove. A few weeks ago something had boiled over on said burner. In attempting to get some of the black off Ryan had poured lemon juice on it the night before to soak. I figured it was reacting and creating the foul odor. I spent about 45 minutes scrubbing it. The smell didn’t go away. I opened the kitchen window a crack for a few hours. The smell seemed to be gone and the heater was running pretty non stop, so I closed the window. A few hours later I noticed the smell again and decided to have Ryan try scrubbing the stove when he got home.

As the day wore on I got pretty sick. By the time Ryan got home I had a headache, was queasy, and achy. Caden had cried over everything all afternoon and I told Ryan I thought he was getting sick as well. We put the kids to bed and Ryan played Wii with a friend of his who stopped by. By the time we went to have dinner Ryan was feeling ‘blah’ as well so we just heated up some leftovers.

At 10:30 as we were headed to bed Ryan got a drink of water from the kitchen sink, as is his routine. He noticed the knob on the burner was turned on – emitting gas. He turned it off and jokingly said to me, “no wonder you’ve felt sick all day – you’ve got carbon monoxide poisoning! That nasty smell was the rotten egg smell they put into the gas so people will notice it.” We figure Caden must have turned the knob, so Ryan took them all off and hid them in the drawer. Then we foolishly went to bed.

At 2 am Eric woke up to eat. I was so sick I could barely feed him. The act of me getting up woke Ryan up. After Eric ate he just laid and fussed in his crib – very unusual for the boy who has always gone right back to sleep after eating. Ryan and I complained to each other about being sick, and started to put two and two together. We had never aired out the house once we discovered and fixed the gas leak. After 45 minutes I tried once more to nurse Eric and put him to bed. While I was nursing him I read up on CO2 poisoning. Everything said essentially “go straight to the ER, there is no at home treatment.”

I put Eric, who continued to fuss, back in his crib. Ryan and I sat on the bed for 20 minutes discussing our options and praying. Do we wake Caden up and spend the rest of the night in the ER? We figured that would cost at least $4,000 and make us too tired to function today. Ryan had a big day at work, and I had a meeting and doctors appointments for both boys planned. Do we just open the windows and hope that in airing out the house we get better? But what about the fact that every single website said you must seek treatment? After many prayers and much discussion we opted to air out the house and wait until morning to go to the ER. As soon as we made that decision Eric quit fussing and fell asleep.

We put extra blankets on the boys, turned the fireplace on and the furnace off, and proceeded to open every window in the house and the door to the garage. Feeling at peace we both went back to sleep, still pretty sick.

Both boys woke up earlier than normal this morning, but are happy. Ryan and I both feel better, aside from the lack of sleep. Today we are feeling blessed and watched over. The CO2 detector we've been meaning to buy for a few years just got bumped to the top of the priority list. The knobs will stay off the stove for a while, and I'll be more alert if I ever smell that repulsive rotten egg odor again.

The jumper

The Parable of the Mountain

December was kind of a long month for me, full of me feeling pretty sorry for myself and some of the trials we are facing as family. I know we are very blessed, and life could be so much worse, but that didn't stop me from throwing regular pity parties. So this morning when I read the Ensign article "Making Mountains: The Parables of the Mountain Guide and the Mountain," it was just what I needed. The quote from Elder Maxwell is what pulled me in - “One’s life … cannot be both faith-filled and stress-free." So take a minute to follow the link and read this great article that puts a little different spin on the whole "trials make you stronger" concept.

Sledding!

Ryan got off work early on New Years Eve, so we took the boys sledding at a park near our home. Caden seemed to really like it and kept saying "Go again!" as soon as the sled would stop at the bottom of the hill. We only took Eric down once (can you see his red snowsuit in the picture on the left?). He just stared at me, looking confused and blinking rapidly when we got to the bottom. After a few runs with me, Ryan took Caden down the big hill. The two of them went further than anyone else! Eric was asleep in my arms, so I didn't get any pictures of them, but they were the best looking father/son sled combo on the hill!

2010 - Here We Come!

2009 was a crazy, but exciting year and we are anticipating an even better 2010. The budget has been set, the project list drafted, and the resolutions discussed. I love that the start of a new year brings with it the momentum for self improvement. The weight of parenthood is continuing to sink in. With Caden parroting everything we say and wanting to mimic every action I find myself wanting to be the best example I can. Consequently my resolution list is probably much too long.

We're trying to plan our family vacation, and realized that depending on when we go we'll either have a blob baby (early spring), a crawling baby (mid summer), or a walker (fall). I can't believe how much Eric will learn and grow in the next year! While Caden's milestones won't be as obvious, I expect him to change just as much.

If everything on the project list happens, our house will continue to transform. Ryan is planning to finish the master bath remodel, the railing, put in a fence, and build a shed or extra garage (depending on finances). I'm excited for another year of gardening and canning.

For the record, I believe the correct pronunciation of the new year is "twenty-ten," but Ryan is planning to say it "two thousand ten." Anyone care to weigh in on how you'll say it?