3 days post op...

and you would never believe it.

Alexis has been SUCH a trooper and has accustomed so well to her ostomy over the last few days. I am sure having a bag hang at your side full of fluids is very awkward and annoying, but it outweighs the non stop constant belly pain any day. She actually looks good. She isn't ghostly white with big black circles underneath her sunken in eyes. Shes actually able to sleep, and she just looks and acts like a normal, HEALTHY 5 year old little girl.

She has gotten rid of both iv's, is completely off the morphine (and is on something not so strong -- taken by mouth every 4 hours) and is officially on a clear liquid diet! Today's feast will consist of lots of jello, powerade, juice and (hopefully) broth. Tomorrow she will tackle REAL food. Hopefully by Tuesday we will be heading home!

The ostomy nurse will be stopping by tomorrow to properly teach Kyle and I how to change out Alexis' ostomy. Not gonna lie-- I am pretty nervous. I am sure I will be the one who will be changing them 95% of the time, which is fine, I just hope I can take everything in the small time frame we have set aside with her! (we will learn how to order, learn the differences in all the appliances, how to empty/clean the bag and how to change out the entire appliance!) I know her belly is still pretty sore and swollen to, so it will be pretty nerve wracking trying not to make the situation uncomfortable for her. But she has managed to take everything in so well-- I'm sure I can handle a little teaching :)

Part 2

After the surgeon came out to tell me how well she did, I was over the moon happy, and the weight felt like it fell off my shoulders almost immediately. As I said before, I felt like I could *really* breathe again. She still had another hour to go in recovery, so we went to her room to wait for her arrival. The minutes seemed to drag on for hours on end, and I kept looking out the window to see if I could catch a glimpse of her being rolled down the hallway. After nearly an hour and a half wait, she finally showed up.


I had butterflies in my stomach. I was so happy to see her! She will still so highly medicated that she would only wake up for minutes at a time, but she knew she had surgery and she was happy to see all of her family members supporting her. The nurses were busy taking vitals, checking incisions and making sure she was doing okay, and I felt the immediate rush of emotions coming on. Her stoma was huge, the tube that now came out of her nose was even bigger than before , she was begging for water (that she was denied over and over again) and I really just couldn't believe that after only 2.5 years of battling Ulcerative Colitis, this is where we ended up. We were just THAT lucky.


The rest of the day is a blur to me (and I am kicking myself for waiting several days to finish this entry!) But I do recall she slept (alot) and itched herself non stop (side effect of her pain med iv), but she still looked better than she has in a reallllly really long time. (Believe it or not) But she made it through like a trooper, and was in no pain at all.


The morning following her surgery they took her off of the continuous drip of morphine in order to help wake her bowels and they put her on a pump. (She was able to push it every 12 minutes!) At first, I think I pushed it every 12 minutes and then I started to slowly space them out. They removed her catheter, she walked about 10 ft or so from her room and managed to stay awake for hours at a time. Less traumatic than I had invisioned for barely being 24 hours out from surgery. She has me awake from about 530 am to 630 just swabbing her mouth with water because she was so thirsty (very exhausting, btw!). Last night was tough. She woke up several times to use the restroom (since they have been pumping her with fluids 24 hours a day due to not eating and/or drinking) and the pain was so bad when she moved that she had to try and catch her breath between crying and freaking out. I felt horrible..watching her in pain, again, broke my heart! So I made sure every time I woke up through out the night from then on out, I got out of bed and pushed her button :) Made a HUGE difference the next time she had to go.


Today went very well, I am also glad to report! She cut her pain med intake in half and she was able to get out of the room and walk! Straight up and down (not hunched over in pain) , at a semi-normal pace and flat footed (she started walking on her tippy-toes.. but I think that was more or less from her poor little feet being so swollen from all of the fluids). She was flooded with even more gifts from her Daddy and sissy when they showed up, and we spent a majority of the day playing various games. She finally had her NG tube removed, and the Dr allowed her small medicine cups of ice chips every 4 hours (yes, one of those 10 ml (?) cups! ) Tomorrow morning we will be moving on to clear liquids!


So in all honesty, the past day or so has been far less traumatic than I thought. This whole ordeal will be hard to become accustomed to, but we will finally have Alexis back. She was unhappy and extremely unhealthy and that's just not how a 5 year old should feel. She is so tough, and its truly unbelievable just how much strength she has.


I know there are probably a  million and one things I am leaving out, but like I said-- waiting to finish this post was a bad idea, and I have managed to already to forget so much (or I blocked it out, who knows?!) The most important thing, is Alexis is doing well. She will accustom to her ostomy nicely and once she heals, we will discuss step 2. Since this surgery (and prep!) was so hard on her body, we may wait a little longer than the 3-6 month time frame.. who knows?




Thanks again for all the support from all of our family and friends, my page views have sky rocketed over the past few days (almost 400 in what.. a week or so??)!!! I will update tomorrow on any upcoming progress!

Surgery Day Recap-- Part One

I will start this blog entry out by saying that this post-surgery experience (up until right now) has not been as nearly as traumatic as I had played it out in my head. Alexis has been on a pain pump with a continuous flow of medication (plus she can push a button for an extra kick every 12 minutes if need be) so she has been relatively pain free since coming out of surgery.  Her bowels are making the tiniest of sounds, her belly is soft and she even had a small amount of output from her stoma-- all good things that mean her bowels are slowly but surely starting to "wake up". The worst thing for her right now is not being able to eat or drink anything. She hasn't been too concerned about food, but she is begging for drinks almost constantly. I am forced to sit next to her with a swab and cup of water and wipe her mouth (sometimes for an hour on end!) to provide some relief. Once her bowels wake up (which could be another few days) they will enforce a light liquid diet, so once we get there I think she will be a million and one times happier.

Now, I will back track to Wednesday night, as I know there are others who are interested in her ENTIRE story from beginning to end. Yes, it was traumatic and I will try to keep as much detail and in emotions included as I can remember. I don't remember exactly what I wrote in my last post, so if I repeat anything, forgive me.

On Tuesday they started the bowel prep around 2 pm. Tube down her nose leading into her belly that pumped about a gallon and a half of some sort of "cleaner". Once it kicked in, Alexis was going to the bathroom almost every 15-20 minutes. Accident after accident we had to force her to wear a pull-up (as she could not help herself, no matter how hard she tried) She absolutely HATED the idea and tried to fight us. I don't blame her, there is no reasoning with a 5 year old. A pull up is a fancy diaper, and she knew it. However, once it was on, she was able to relax a little and took a nap. Neither one of us slept very well that night (but, she did sleep several hours more than I did!), between constant trips to the bathroom , nurses coming in to check on her and my nerves being in overdrive there was absolutely nothing I could do to change that.

Around 930 on Thursday, the OR called for Alexis. Reality immediately set in. I started crying and it took everything in me to stop. We rolled her down and they started hooking her up to O2 sensors, gave her additional iv fluids, medication for her to relax and they talked us through what was about to happen. Everything that happened between explaining and dragging her into the OR room was a complete blur. All I know that once they took her off and sent us to the waiting room, I felt as if my world was crashing down all around me. I heard them wheeling her down the hallway, and I heard her crying for me. It hurt me so bad, but I made it through (not without breaking down once again.. but what Mother would I be if I didn't? Hearing your baby cry for you and not being able to do anything about it is horrible!)

The surgery itself only took about 3 hours once they got started. Originally we planned to do a 2 step procedure where they would remove her colon, create the ileostomy and the jpouch in one procedure and then reverse the ileostomy and connect the j pouch in the second. However, due to her inflammation, blood levels being so out of whack and the Dr not being 100% sure she has Ulcerative Coltis vs Crohns, he decided that the 3 step would be more beneficial. So we will be going back for procedure #2 in a few months as long as the pathologist confirms that it is UC in her colon (as the Dr confirmed there was NO inflamation in her small intestines he could see! -which would indicate Crohns) where they would create the j-pouch and then procedure #3 would be done a few months after that where they would reverse her ileostomy (basically close it up) and attach her pouch to the small intestines. This would give her the ability to hold stool (not much and not for long periods of time tho) but she would look and feel more normal! The j pouch is not a guarantee and could inflame and need the same medication we were lucky enough to get away from, but we are hoping that it is managed well and she can keep it permanently. She would still go to the bathroom 5-10 times a day, but I would hope she would appreciate it more than having her small intestine sticking out of her little belly.

During the waiting period, I can't even describe an emotion I felt.. because I didn't feel anything. I was just lost. I napped and stared at the clock until our families arrived. I was overjoyed when Kyleigh arrived. She was the only thing that made me feel better. I missed her so much!

But, when the Dr came out and told me how well she was doing.. I was completely thrilled! We finally made it to the top of the mountain, now we just had to slowly work our way back down.

I think I will stop there, I will write part 2 later on today or this evening when I have some extra time!

Calm before the storm

I can't believe the day is already upon us. I am a ball of nerves and wish I could just sleep through the next few days.

Alexis and I arrived at Nationwide Childrens Hospital today around noon (as we were told). Of course, I should have expected there to be problems since the surgical cordinator has been less than helpful putting this whole thing together (I didnt get ahold of her until after 4 pm yesterday..and she finally informed me that I needed to be here today) The admitting department had no idea we were coming in today. After several calls, and waiting nearly a half an hour, we were finally in the system to be taken to our room.. but, of course our room wasnt ready (insert very ANNOYED face here!)  so after waiting another half an hour.. we were finally ready and were sent off to our room.

Which, I almost forgot to mention-- we are in the new hospital at NCH! SO nice..huge..and modern! Our rooms are bigger than a walk in closet and they are equipped with a nice 40 in lcd and a wall that even changes colors continuously! Its luxury at its finest when compared to the old hospital and the old rooms!

The previous portion of my blog was written before all the "fun" stuff started happening..

About 2 hours after getting to our rooms, the nurses decided it was time for the NG tube (small tube they stick down her nose, down her throat and  into her belly). Horrible. All Alexis has done since getting it placed is cry, choke and attempt to make herself sick. The only relief she manages is sucking on a popsicle. It hurts so bad watching her deal with something so SMALL, knowing I am about to change her world tomorrow. Just thinking about it at this point makes me so mad and angry. They brought in a gallon jug of some type of medication that they are feeding through this tube which is meant to clean her out. As soon as everything is clear, the tube comes out.

We met with the ostomy nurses, who marked on her belly where the stoma will be placed. Watching them talk to her and explain what they were doing was exceptionally hard. I have done nothing but try and prepare BOTH of us for whats coming, but visualizing it was unbearable! Something so simple, yet I barely made it through without breaking down. They did get Alexis a shadow buddy doll-- which she seems to really enjoy, so that was a plus.

Kyle and I appreciate all the kind words and thoughts at this time. This truly is one of the most depressing and exhausting days I have EVER been through in my entire life. I know tomorrow will be a million times worse, so I will say it again-- I dont know how I am going to make it through. Seeing Alexis so unhappy and sad is horrible, but I am hoping that this is the best thing for her and she starts feeling relief and reaping the benefits soon

I probly wont write again for another day or so. It took everything in me to get this out, but  I knew if I didnt all of my emotions would be jumbled up into surgery day and I would most likely forget everything.

If you want to send Alexis a card, click here. All you have to do is enter in her room # (H05A-15) and they will print it out and deliver it to her! There are no visitor restrictions, however I know she will be in alot of pain tomorrow and wont be up for much company (besides immediate family) anytime after that is completely fine!

3 more days..

The biggest difference in Alexis' surgery being planned vs. someone who is forced to have it via emergency surgery is obviously, we were able to prepare her. When we first found out that surgery was no longer an option, but a necessity, I immediately tried to think of how I was going to break the news to her. She is 5, and is wise beyond her years, but this is a big deal, and there are many adults I know who would have a horrible time accepting this. I started googling pictures. Bad idea. I then tried to explain it verbally, and she cried. So I went to one of the many IBD/Ostomy facebook fan pages I subscribed to on facebook, and many people told me about these Ostomy Dolls.

Let me tell you, the doll has made such a difference!

There were 2 types of dolls I found (www.shadowbuddies.org) was a simple cloth doll with a small ostomy.  I decided not to order that one due to the fact the ostomy nurses would be presenting her one at the hospital! The second one I came across was from (www.stomawise.co.uk/lifestyle/the-gastronauts), and instead of it being a simple cloth doll, it was a very detailed PUPPET! That alone was awesome, because I knew Alexis could interact with it, and the fact that it had a REAL working neonatal ostomy was a HUGE bonus. Once Alexis knew the puppet was coming, she watched for the UPS man everyday until it came.

Not only did the ladies from Stomawise send the doll, they also have sent me a GREAT book (http://www.amazon.com/Unwanted-Baggage-Comprehensive-Introduction-Surgical/dp/1456771558) which has helped me out tremendously. I no longer feel like I am in the dark and have to be scared about the transition...They have also sent Alexis coloring books and have checked up on her several times!  She has such a following already :)


So, besides the dolls, I have also been able to get in contact with the major ostomy suppliers and they have sent Alexis a ton of samples. It was nice being able to see exactly what they looked like/felt like before the surgery so Alexis could have an idea of what to REALLY expect. Also a must have because they all seem to be made differently (shape, size, texture) so its nice to know what you will get before you go and waste $$ on them. They have also sent me random creams and barriers, but I still am unsure of what all we need (which sucks because I want to buy everything and have it BEFOREhand!!)

Another must have I read was a waterproof mattress cover! Because, lets face it..leaks are gonna happen...and they will probably happen alot in the beginning. I wouldnt skimp on this, as you know whats coming out of the bag.. and a mattress protector is cheaper to replace than a new set of mattresses! (http://www.amazon.com/SafeRest-Hypoallergenic-Waterproof-Mattress-Protector/dp/B003PWS9AI/ref=sr_1_1?ie=UTF8&qid=1341838052&sr=8-1&keywords=waterproof+mattress+cover+twin  --here is the one I purchased! Great reviews all over the web, as well as several recommendations from several other ostomates)

Aside from all of the physical things that have prepared Alexis and I... talking about it has become a little easier, and shes to the point now where she willingly shares the information with other people! She asks me everyday "How many more days until my appointment, Mommy?" and then tells me she can't wait to have her belly fixed.

..and even tho I still am scared to death about the operation, I can't either




(P.S- My goal for tomorrow is to be a little more on the organized side..I still am trying to get used to blogging again! Bear with me!)

5 more days..

I received a call from the WOC nurse yesterday. We went over all kinds of information, and she informed me that Alexis is expected to be admitted the day before surgery for a bowel prep. I feel like an outsider most days when it comes to the whole surgery , I really wish they would give me ALL of the information when they get it, not a day ahead of time! I have another kid I have to make arrangements for!!

But, I won't even get into that today..

Alexis has been starting to flare again. Worst timing possible since that could directly effect the number of surgeries she has to have.  If they go in and see there's minimal inflammation, then we will go with 2 surgeries. However, if they see that her entire colon is inflamed and covered in ulcers, then we will have to do a 3 step surgery. Hoping we can stick with the 2 step, but we will just have to wait and see. 

I am feeling pretty optimistic today. I am cleaning every room of the house, and I plan on starting to pack the hospital bags. 

I am just ready to get this process over and done with!

Days to Surgery: 6

So, I have been asked to keep a blog on the journey of this nightmare of a disease. Here is post one, so I will start from the beginning...


Rewind to March 2010. My husband and I welcomed our second daughter into the world. Everything was great. We were all healthy and happy and couldn't wait to start our life as a family of four.

Our world however, came crashing down just a few short months later.

Our oldest daughter, Alexis (who was 3 at the time) , was starting to go to the bathroom more and more. I kept taking her to her pediatricians office, and they kept telling me it was a bug and to come back in a week if it hadn't gotten better. Eventually we started noticing blood in her stools, and she was waking up several times throughout the night to use the restroom (and falling asleep on the potty!). I went back to my pediatricians office, and demanded them to run tests. We were sent to Nationwide Childrens Hopsital (in Columbus, Ohio) and a colonoscopy was preformed. I still remember the pit that grew in my stomach when the Dr told me Alexis had Ulcerative Colitis. Never in my life did I think *I* would be the one to have a sick kid. I cried alot the weeks following that appointment, I felt as if I let my baby girl down.

The gastroenterologist we were set up with has turned out to be a godsend. He answered all of my questions, listened to all of my concerns, and eased all of Alexis' fears. We started her on a course of Sulfasalazyne and the ever-hated Prednisone, but after a few months Alexis was finally in remission! Despite giving her medications several times a day, she looked and felt good. I was happy

The next year and a half we encountered a few mild flares, then everything (once again) came crashing down.

Alexis started having the symptoms again in January 2012. Joint pain, going to the restroom 20-30 times a day, loosing more blood than I thought was possible, persistent vomiting, fevers, loss of appetite and being so tired and weak she could barely stay out of bed for more than 20 minutes at a time. She was eventually admitted into the hospital and given a strong course of IV medication. We were hopeful that after a few days she would turn the corner, but that never did happen.

After spending about a month in and out of the hospital we were forced to try Remicade. The steroids were no longer effective, and Alexis was not getting any better. I read all the side effects and again, cried. How are you supposed to put a medication in your child's body that could eventually cause cancer? I was so angry. I didn't know what to do! However, I knew that there was nothing I could do besides a total colectomy and I knew I was not ready to put my daughter through something so drastic, so I gave Remicade a fighting chance.

Now, I will fast forward to present day. We have had multiple Remicade infusions, as well as several blood transfusions. Alexis' UC just isn't responding well to it, and again, isn't getting any better. Our next step is surgery which will be done 7/12/12.

I could write for days on how I feel about this. First and foremost, I am scared. Scared for how she will adapt to living her life with a bag at her side, I am also terrified for her to feel any pain. What I wouldnt do to take it all away!

I am still very angry that Alexis has had to deal with this. Shes 5 years old and to her, this is normal. Being in pain and going to the Drs several times a month (if not more) is completely normal. She asks to be in dance, and cheerleading and gymnastics and I have to explain to her that she is sick, and its just not possible right now..and that's just not fair. She deserves to live a normal life!!!!

But, alas all of our struggles, my husband and I do our absolute best to keep it together. Not only for our 2 daughters, but our families as well. We know they are scared but we want to reassure them that despite our scary this all is, this is what Alexis needs to live that normal life I so long for her to have.



And thats it for today, I am sure this is completley unorganized, but I had ideas running 500 mph through my head that I needed to hurry up and get out before nap time was over! I will focus more on the ostomy and what we have done to prepare later on tonight or tomorrow!