Monday, April 30, 2012

The Sh*t that is Crohn's Disease



On Monday, April 9th Sophie was admitted to Children's Hospital of Dallas for the 2nd time in less than a year for her Crohn's Disease.  


Looking back now I try make it less horrific than it was but it is still too fresh in my mind to be forgotten.  Sometimes time makes it better, sometimes it does not and in this case I'm pretty sure it will stick with me for quite a while.  


How did we get there?


On the 29th of February Sophie had her 3rd colonoscopy in less than 2 years --- you can read about it here.  The days before the procedure required a special diet and fasting.  During that time we took Sophie off of the steroids she has been on for 2 years and her Imuran (azathioprine).  After the scope her diagnosis was officially changed from Ulcerative Colitis to Crohn's Disease and we made the decision to keep her off of steroids and Imuran and move forward with a new treatment plan of Remicade as soon as possible.  Unfortunately, Sophie was diagnosed with Strep twice and then Scarlet Fever in just over a months time.  Each illness required antibiotics which always helps tremendously but each time caused her to have C-Diff.  Each time delaying further our being able to start her Remicade treatment.  


So, without the steroids Sophie got very sick very fast.  It's hard for me not to use a lot of curse words when I type out this post. So, I think I will start now.  Some people believe that people that curse are uneducated and/or can't think of more appropriate words to use.  I disagree, I believe sometimes situations such as these call for a lot of cursing 1) to portray how strongly I despise fucking Crohn's  2) to explain how truly fucking horrific this damn disease can be and 3) sometimes it makes me feel better just to fucking cuss!  You have been warned!


Thank you, Alexis for this awesome picture!


By the time Sophie was admitted to the hospital she was having 12-15 bloody stools a day.  Really, she was just pooping blood but there wasn't that much poop involved at that point.  Along with losing massive amounts of blood, she was having sever stomach cramps and pain, was dehydrated and her hemoglobin level was 7.3 (if I remember correctly).  It was fucking bad!  She felt terrible and as her mommy I was just emotionally overwhelmed watching her suffer. 


Jim left town Monday morning and Sophie was admitted that afternoon.  Although friends and family offered to go with me to the hospital I thought sure I could handle it alone. I dropped Nate off with my parents and had a friend pick up Em from school and Sophie and I headed to Dallas.  Just hours after arriving I felt overwhelmed.  Emotionally and physically.  The IV team couldn't seem to get the IV into her vien which caused a lot of tears and screaming, the constant trips with Sophie to the bathroom where I was literally holding her up on the toilet all while maneuvering her around with an IV, and heart monitor, plus feeling for the 1st time that I was totally alone with Sweet Sophie and her stupid, evil Crohn's Disease was pretty damn tough. 


Luckily, starting on evening 1 friends and family started streaming in which was a nice distraction for both me and for Sophie.  I literally would have not eaten or had anything to drink if it had not been for my friends and family bringing in food, diet coke and coffee for me.  With it just being me and the Doodle I was pretty much at her bedside the entire time and could not or would not leave her unless someone else was there with her.  


Instead of trying to remember each day I am going to import my Facebook statuses from each day as that was my main form of communication with everyone.  Which saved my sanity because I could not have given each and every person their own update so here we go . . . 



Checking in Sophie Doodle. Blood work needed - possible transfusion and lots of meds. Her labs came back very bad. She's a sick little little. :( — at Children's Medical Center.


I always forget how completely impossible it is to sleep here. — at Children's Medical Center.



Quick update. Sophie is enjoying some music therapy right now which has cheered her up a bit. She has not been able to eat since last night so she is a bit grumpy. She will go under for a scope today at 1:30. We are hoping that the infection in her colon is not too bad and that her current antibiotics will clear it quickly and we can still begin her Remicade treatment later this week. — at Children's Medical Center.





Sophie is back in OR ---- waiting, waiting, waiting, waiting! — with Helen at Childrens Hospital Dallas Tx.

Helen took this photo before they took Sophie back to the OR:


Sophie update --- we are awaiting biopsies from scope today and hoping the IV antibiotics are clearing her infection so that we can go forward with her Remicade infusion (possibly) Friday. The infusion is scheduled to take about 4 hours. We will make final decision on blood transfusion tomorrow. Sweets is a sick little little --- she's lost 5lbs and feels pretty yucky. Thank you all for all of the thoughts and prayers. I'm overwhelmed and still full of HOPE. ♥

There are so many things I would change about CMC (not complaining at all) ---- the 1st one would be to add Starbucks delivery to each room for the sleepy mommies! — at Children's Medical Center.

Sophie update: potassium and hemoglobin levels are both down. She is now getting potassium through her IV along with antibiotics. Her heart rate is still good so no blood transfusion today. We are still awaiting biopsy results from scope yesterday. Still HOPEful that she can begin Remicade on Friday. — atChildren's Medical Center.



Wednesday night late ---- Jim arrived home and spent the night with Sweet Sophie so that I could get some much needed wine, pizza and rest.  :)

Sophie update: Miss Priss is pretty sick today. She's now throwing up and unable to eat. Zofran ordered --- hoping it helps. Biopsies all came back ok so orders have been placed to begin Remicade today. They will give her steroids, Benadryl and Tylenol thru IV to counteract any reaction she may have to the drug. She will be monitored very closely for the entire 4 hours.

Someone this week called me a warrior mom. I like it. But I'm scared to death and hurting for my baby. Working today to keep calm and fight Crohn's.



And because I love and admire Ms. Meri so very much . . . this message meant the world to me.  
From one Warrior Mom to another:

According to the dictionary Warrior means: A person who shows great vigor or courage. You are a warrior mom, and she is a warrior little. Keep calm and warrior on! Love you!! Shooting prayers your way all the time. ♥


And Thursday afternoon we started Sophie's Remicade infusion around 5:30 or so. Finally. 
I was nervous and scared and relieved all at the same time.  I cried a lot during the infusion as Sophie lay there sleeping.  I didn't help that I repeatedly was reading the black box warning from the FDA ----

Some children, teenagers, and young adults who received infliximab injection or similar medications developed severe or life-threatening cancers including lymphoma (cancer that begins in the cells that fight infection). Some teenage and young adult males who took infliximab or similar medications developed hepatosplenic T-cell lymphoma (HSTCL), a very serious form of cancer that often causes death within a short period of time. Most of the people who developed HSTCL were being treated for Crohn's disease or ulcerative colitis with infliximab or a similar medication along with another medication called azathioprine (Imuran) or 6-mercaptopurine (Purinethol). Tell your child's doctor if your child has ever had any type of cancer. If your child develops any of these symptoms during his treatment, call his doctor immediately: unexplained weight loss; swollen glands in the neck, underarms, or groin; or easy bruising or bleeding. Talk to your child's doctor about the risks of giving infliximab injection to your child.

Finally, Jim took my iPad away.  Our decision was made, the infusion had begun and we hoped for the best.

Sophie update: We are done. We survived round one!! Sophie slept through the entire infusion. Her blood pressure dropped scary low but they slowed down the infusion and it came back up. She's not feeling great but she is resting again now. I'm totally drained. Ducking Frohn's.

Thank you again for all of the thoughts and prayers. ♥




Tired mama and spirited Doodle — with Laura Williams-DeJulius Houston at Children's Medical Center.



Hospital cafeteria sushi ---- good idea or bad idea? At least I'm in ... the hospital already! Oof.

And for the record . . . it was a very bad idea.

Friday, April 13 at 4:05pm via mobile 

Sophie is so excited and suddenly feeling better!!! Some wonderful friends sent her JULIE --- an American Girl doll.





Friday, April 13 at 6:15pm via mobile 

Sophie is BORED!!



Friday, April 13 at 8:25pm via mobile
Sophie update: tonight Sophie is running a fever (currently 102), severe headache and feeling nauseous. We are about to do a blood culture to check for an infection in her blood. She's pretty sickly and very upset about the 3rd blood draw of the day. :(



Sophie update: Fever is down with help from Tylenol. Her headache feels better and so does her tummy. She was up a couple of times over night. Overall showing signs of improvement. Still awaiting test results. As always thank you all for the love, prayers and support. ♥


Saturday, April 14 at 2:23pm via mobile
Slept, showered, and ate. Now back with the Doodle — at Children's Medical Center.


Saturday, April 14 at 3:18pm via mobile 

Sophie is SO HAPPY!!!
The hospital bed provides tons of entertainment for 6-year olds!!!
 



Saturday, April 14 at 3:57pm via mobile 

OMG ---- we are out of here. 150% Improvement!!



Saturday, April 14 at 6:13pm via mobile 

Sophie & her friend John with all of her loot. :)




Jim and I loaded up the Doodle and headed home to get the other littles.  




Once home we REALLY realized how much STUFF Sophie had accumulated over the 6 days in the hospital.




The Remicade worked quickly and Sophie is feeling much better.  The Crohn's symptoms are almost gone but we are dealing with a few side effects from the Remicade.  We went in today for her 2nd infusion.  I'll post about that experience tomorrow.

I am at this point very grateful for the quick healing effects of the Remicade but somewhat still pissed off in general that I've had to make a decision to put my sweet child on such a harsh medication at the age of 6.  The fear of the black box warning stays in the back of my mind and that my friends, is why Crohn's Disease fucking sucks the big one!  

Sometimes Keeping calm and sometimes freaking the fuck out . . . 

Thursday, April 5, 2012

Finally Feeling HIGH

When Nate was diagnosed with type 1 diabetes all I remember is that his bg was over 500 ---- I'm not sure they ever game me an exact number.  In the ped's office they just used a regular glucometer so it probably just said HIGH.  The hospital stay is all a blur now so I don't remember the official dx bg.

The 1st year after Nate's diagnosis we saw a lot of high numbers and the word HIGH on the meter frequently.  I've read so many times how terrible high blood glucose makes people feel.  Stomach aches, vomiting, and sluggish. I've even heard it compared to the worst hangover ever!  UGH! --- yea for me that would be a red wine hangover. :)  For Nate he has never acted any different. He'd be rocking a high bg and still happy as a clam.

Lately though, things have changed.  He now feels his highs (still no hypos).  He feels bad.  He cries and moans.  He tells me his tummy hurts and he is so sluggish.  It. Is. Heartbreaking.  Last night he went high after a pod change while sleeping and I woke up to him crying and moaning in his sleep.  Poor little guy!

I don't know if it is because he is older and becoming more aware of how he is feeling or if because we have tighter control the higher numbers are just feeling bad.  Whatever the reason ---- being HIGH sucks!

Keep Calm and RAGE BOLUS!!
Also Ducking Fiabetes!