Monday, July 9, 2012

Long Days and Long Nights.

Its a complicated story if you aren't familiar with the lingo of bowel conditions, but essentially Addison had a serious problem called an ileus. Its like an obstruction, but instead of something blocking the pathway, the area affected becomes paralyzed and the lack of movement in the intestines/colon causes everything to get stuck as if it were obstructed.

We were on our drive home from Cincinnati, only 40 minutes or so from home, when my oldest daughter yelled that Addison was throwing up. My mom and I quickly pulled over thinking she was carsick. But when I climbed into the back seat to get her out, I realized this was something else. Addison had thrown up literally buckets of thick clear mucus, it was yellow/gray in color and she had not eaten in 2 hours. She was completely out of it just throwing up over and over and over. I lost count somewhere around ten times. Her stomach was massively distended under her ribcage and thats when I began thinking she was suffering an obstruction. My mom dropped Addison and I at St. V's after a tense car ride the rest of the way there. It was pouring rain, and we entered the ER soaking wet with literally just the clothes on our backs. I carried Addison into the ER in just a blanket and she lay there in my arms limply. The person at the desk took one look at her and rushed us straight to the pediatric ER.

Once back there, I quickly got frustrated that no one was treating this like an emergency. She began to have stronger and stronger pain (which considering her high pain tolerance/lack of sensitivity to abdominal pain) made me even more worried. I finally walked out into the hallway after 10 minutes of no one coming into the room and told our nurse she needed to be seen right away considering the severity of her symptoms combined with her potential for disaster due to her complicated history. It was obvious there was an acute emergent situation going on and I wasn't going to let them blow us off or make her wait in that kind of pain for hours. Usually, I'm the one yelling at Adam for charging out and demanding someone see her, but this time I couldn't help but smile thinking he would be proud of me for taking charge when the time came. :)

She continued to vomit in the ER, all over me, her blanket, and the bed. At this point all I can do is rock her in my arms while they get xrays ordered, iv started, etc. so I am just covered in puke by the time its all said and done. Doctor comes in and we give him a brief (haha) history. For once, no one questions the possibility of her having a rare metabolic disorder - the team that is on that night had all seen Addison at her sickest last year. He goes to do a rectal exam and liquid stool immediately projectile shoots 3-4 feet across the room. Xray from my view showed what looked like a softball underneath where her ribs split. Apparently to the doctor it showed what is called an ileus. It basically means Addison's motility became paralyzed somehow and everything quickly started backing up behind the trapped air and stool. They gave her morphine and she began to relax and fell into a deep sleep.
I was worried she would need surgery, but we formulated a plan to run a bowel cleanout at high speeds in hopes it would kindof pop the ileus out of place. The other option is sucking it out from the top but they thought that would be more traumatic for her. I tried to do an irrigation but couldn't get much out at all because of the location of the problem. So we began the GoLytely cleanout (this is the second time in her life she's needed an NG tube inpatient cleanout). Our nurse just so happened to be the same nurse we had the first time we did it, so that was an odd coincedence.

I'll save you the details about the next 12 hours - we will just suffice to say it was messy. Despite being pumped full of diarrhea-inducing drugs, my sweet baby still cannot release any of it without the catheter helping drain it out. So every half hour at one point I was inserting the catheter to release some of the stool and air. I got more than one shot of diarrhea directly on my (yes, only pair) of clothes and I was feeling stinky and awful by the time Daddy got done doing his dj thing at a wedding downtown and brought us up a few things.

I had to put the tube in her more than a dozen times and she just absolutely poured stool. It was unbelievable how much was in there, some had blood in it, but at one point it started to run nearly clear about 6am and we got excited and they started talking about going home later today. Needless to say, it got worse after that, pain and distension increased again rapidly and I attempted to give 2 ounces of formula, which didn't go over well. They had me stop all formula and water by mouth again and continued running the cleanout.

She is now looking more stable, it took over a gallon of colonoscopy prep solution to get her cleaned out. However, despite finally clearing the distention, stool, and solution, she's developed some problems with urination and there is still an area of tender swelling in her lower abdomen, whereas the problem area before was a large area up high. After 24 hours of no food or water, she was able to keep down 3 ounces of Neocate tonight, so I asked them to take out her NG tube so she could sleep. She needed Benadryl to fall asleep, I wished we had brought her Melatonin with us. I'm not sure if they have fully appreciated the complications of something like this with her other issues and I don't want to let them send us home too soon, but I am hoping to get out of here if they arent going to do anything else for her.

I am able to continue treatment at home with her rectal irrigations as needed, so as long as she is eating well, I feel like we can follow up with our specialists outpatient. I plan to evaluate that area of tenderness in the morning and if its still there, ask for further evaluation of it.

As you know, less than 24 hours before this occured, we were seen by both our GI and Colorectal Surgeon at Cincinnati Children's. I am extremely disappointed that they obviously missed this in both the clinical settings, and she was even given an x-ray that the Colorectal Surgeon said was perfect. I plan to have them send the X-ray up here tomorrow morning so I can have someone determine if they were neglectful in reading the X-ray. I am really missing my little Audrina, this is the longest I've been away from her since we were seperated at her complicated birth. The big girls had a birthday party yesterday for our friend's little guys, and they got to ride in a little 5 seater airplane. They promptly called to tell me about it... and asked when we can buy an airplane, too. ;)

Please continue to pray we are home quickly with no further complications from this. Some nagging feeling in my gut says this is the beginning of something new and not a one-time fluke problem. I don't feel like anyone has any answers as to why this happened... (Her diet/overall health has been amazing the past 6 months, they typically see this type of thing after surgery or other traumatic event to the body.) She was fine one minute and the next, so scary and sick. Fingers and toes crossed this is just a blip on the radar. When I get some rest and get home and unpacked, I will tell you guys all about our appointments at Cincinnati.


  1. I am so sorry. Keeping you in my prayers!

  2. Oh honey my heart aches for you!!! I have been following your story for quite a while now, I first came upon it as we were both on the Baby center forum during our pregnancies. I am also a critical care R.N., so I understand what you are saying about the medical terminology. You ARE right to trust your gut!!! Since I work in the medical field I have seen first hand how phycians blow off family members concerns & feelings, which is very sad but true. KEEP pushing mama!!! You are Addison's & Audrianas only advocates! I know you'll never give up!!! Prayers & hugs for your precious family!!! -Dacey Rame, Oklahoma.

  3. praying for addisons quick recovery!! I hope the x-ray from Cincinnati comes back clear because I LOVE the GI doctors at Cincinnati children!!! Good luck to you and your family!!

  4. Get well soon my dear..prayers ..

  5. Get well swiches...still praying for you.

  6. Hope she is feeling better soon.

  7. Oh, sweet girl! We pray for you every night Addison and your little sister Audrina. Your entire family is in our prayers. We pray and hope that you are feeling much better and that this doesn't happen again. We are sending lots of hugs too =o)

  8. I am praying for Addison. I have been following you for awhile now...we both had babies in Nov 2010 and were on the same BBC birth board. So sorry your poor baby is suffering so.