Tuesday, July 31, 2012

Good Day!

I was contacted by a member of Girls With Guts and asked to write a piece detailing how I have managed to stay strong throughout this entire process, below you can read my article.

As a mother of a 5 year old with Ulcerative Colitis, you would not believe just how many times I have heard people tell me “I don’t think I could do what you do, you are such a strong Mother.” But the thing is, it’s not strength and it’s not exactly like I had a choice, I am simply doing what I must do as a Mother to care and protect my child when I am forced with no other options.
Alexis was diagnosed at just 3 years old. My world shifted and I felt like I was losing control.  As a mother, I felt like I let my innocent baby girl down. Fitting in Doctor appointment after Doctor appointment, to making sure she received her medications on time (at one point I had to give her medicine to her ten separate times throughout the day) was all I could do to ensure she felt as normal as she possibly could.  Many hospitalizations later, I was given the option of Remicade or total colectomy. I wasn’t ready to put her through such a major surgery, but the medication had side effects that scared me to death. That saying “Mommy knows best!” isn’t always true, because I had no idea what to do. Her G.I Doctor talked with me several times and suggested we give Remicade a fighting chance, so we did. It failed.
July 12, 2012 was the absolute scariest day of my life. Alexis was forced to have a colectomy with a temporary ileostomy, and again I felt as I had failed her. The pain I felt while she was in the operating room is simply unexplainable.  Seeing her in recovery was also a moment I will never ever forget.  These are situations you never expect to happen as a parent, but when you are forced to deal with them you must always put your best foot forward and do it with a smile. So we did, and we made it through (sometimes, barely hanging on!). We were lucky enough to prepare Alexis for the transition which made it 100% easier on her. She knew that without the surgery, she would still be sick. She has taken the change so well, and I would like to think that my husband and I had a huge role in that.
So, to ANY parent in any comparable situation: You are allowed to cry, be angry, hurt or sad.  These are our precious kids we are talking about here! What matters most is that you are there for your children when they need you. Talk to them; let them know it will be okay; shower them with your love and attention.  As a parent, that’s really all you can do when you are left with no other options.  Walk tall and they will follow.
“You never know how strong you are, until being strong is the only choice you have.” 
You can click here to visit their site.

I was honored to write for them, and I am very excited to spread Alexis' journey with even more people. 

Now, today was a very exciting day for my family. I found out at the beginning of the month that we were expecting (thus , my lack of updates-- I have been sick..and just TIRED!) I visited the ob and had our first ultrasound today. This little guy (or girl) was there for Alexis' surgery, and made it out a-okay. Another little fighter. All the stress, lack of sleep (and food for the most part!) and here they are. Despite all the hurdles we have faced up to now, I know everything is going to be okay. Alexis is feeling good, and she is BEYOND ecstatic to welcome another sibling!

Thursday, July 26, 2012

Happy & Healthy

Sorry for the hiatus. I have been feeling horrible the last week or so. Good news is Alexis has been feeling great! She has adjusted so well, I truly cannot complain. Even when I am feeling down about the situation, it  seems as there is ALWAYS someone there to remind me just how much of an inspiration Alexis has been to everyone. I checked my mail yesterday and there was a package from a man in California (who also had a colectomy) he sent Alexis a stuffed piggy some lip gloss and sticker earrings (and yes, both of my girls got them EVERYWHERE!). Today I check the mail, and we received a $530 gift card to Toys R Us and a $50 gift card to Olive Garden, courtesy of our friends Brandon & Liz (and from the awesome users of the Howdy Inc forum & Pearl Jam's 10 club forum.) She has seen her fair share of bad days, so its so amazing to be able to watch her enjoy herself. What kid wouldn't love spending that much money in a toy store!

The Great Bowel Movement contacted me and offered to send Alexis a shirt! They seen how much of an impact she made on the IBD community and decided to start a new program called "SponserShirts." By "buying" a GBM SponsorShirt, they will be able to send IBD patients who are in the spotlight, making a difference, or simply fighting an extraordinarily brave battle with their disease. Such a great cause, so if you can, help them out. I know Alexis will absolutely love her shirt--and I hope they know how much we appreciate their gesture.

I still receive multiple emails a day too, letting me know how much Alexis has inspired people around the WORLD. It still gives me butterflies and makes me extremely happy to know that Alexis has touched the hearts of so many.

Today marks 2 weeks since Alexis had her surgery. Hard to believe she has bounced back so quickly! She is finally happy AND healthy (and looks better than ever!)

Saturday, July 21, 2012

I can't complain..

Just wanted to drop in and update everyone. I have been extremely busy over the last few days, and just couldn't find the time to get on here.

Alexis is doing very very good. Eating, drinking and back on her regular schedule. She feels good and I have no complaints.

So to everyone who has emailed me; I WILL respond. I enjoy the feedback and love the personal stories. I am very interested in talking to those who have decided to go with the j-pouch and how they feel about their decision and how the surgery itself went for you.

Thanks for checking back; I will attempt to have a better (longer) entry for everyone next time :)

Thursday, July 19, 2012


Shortly after my last blog post Alexis started vomiting. Since she was hardly drinking or eating to begin with I decided to take her right back to Childrens Hospital. Once there they did some blood work, gave her some meds, preformed a CT scan and pumped her full of fluids. It was a loooooong day, but we are finally resting back at home.

Her CT came back clean, no blockages or abnormal adhesion's whatsoever. Her blood work looked normal (I haven't been able to say that in over 8 months!) except for her white blood cells, but they are slowly but surely coming down from what they were pre op.

So all in all, we have no idea why she was vomiting. Maybe it was too much too fast? Maybe she caught a bug? Maybe she was just too dehydrated? Who knows. It's so hard to pinpoint vomiting in a child; as (like the Dr said.) "you can look at them wrong, and they will puke) I will pay extra close attention to her,and if anything is off-- back she goes.

Just keep her in your thoughts, that she continues to heal properly and stays OUT of the hospital!

P.S- Alexis made the Huffington Post-- so awesome! Huffington Post Article. I love that the IBD community is getting the awareness they so much deserve!

Two steps back?

One week ago today, Alexis had surgery to remove her colon, and a temporary ileostomy was created. Since the surgery itself was done laproscopically, she seemed to bounce back fairly quickly.. pushing herself to walk to the playroom the day after surgery, going to the bathroom all by herself just a few days after that, and eating real food just 4 days post op.  She absolutely hates when I tell her shes a tough cookie, but she really is.
Alexis and Stoma Sue

But, here I am, just trying to make it through the day with my head still attached. Alexis has little bursts of energy, but for the most part she spends most of her day laying around. She still isn't eating and I still find myself forcing her to drink(pre-op, she would drink ALL day long!). Her output has slowed down, which is nerve wracking..but I am trying to remind myself that she isn't necessarily taking much in. She doesn't have a fever, and she isn't vomiting or in pain.. but it's hard not to be concerned. Against her wishes, I have changed her opaque pouch to a translucent one so I can monitor her stoma color as well as peek at her output when I see fit. I know I can be a little overbearing at times, and she hates it, but I want to know the second something is wrong (if there is something wrong, that is)

I just wish I had someone to tell me that all of this is normal. I called and talked to the nurse and she said that loss of appetite it normal, but why all of a sudden is she drinking less? At the hospital she was running around non stop, and now she is laying around more.  

If anyone can give me some insight, whether or not I should be more concerned than the nurse is letting on..please oh please let me know! I so badly just want things to be normal for her!

Wednesday, July 18, 2012

Not much to write about today. Alexis is doing about the same as yesterday.. still laying around and not eating much (who am I kidding-- hardly anything at all!) and I am having to force her to drink. Not sure what her deal is really... hoping she gets out of this funk asap.
Alexis all ready for the CCFA 2012 walk!

We encountered our first leak today. Not to bad at all, but I wasn't expecting to have to change her entire appliance after (almost) 3 days. I am going to try and get her used to wearing the ostomy belt, as I know that can improve the amount of time between bag changes. I was definetly more comfortable and relaxed changing the wafer, cutting it to size etc etc.. this time around vs. during the teaching at the hospital. However, I am kind of worried I cut the wafer just a tad too big. I know this is a  learning experience for the both of us, and I am hoping I can perfect it sooner rather than later.

I am on the hunt for a band for her to wear to cover the bag (think of a belly band--very similar). It will hold the bag closer to her body, thus being more secured and it will cover it under her shirts (since most of her shirts are form fitting). They make special ones for individuals with ostomys that you can tuck into a pocket, and I am not having any luck finding them in her size. We ventured out to the grocery store today and she was concerned about other people seeing it, so I want to get one as soon as I can, especially with school starting in a little over a month for her. 

Still no pathology report on Alexis' colon. I am getting a little antsy. I hope it doesn't mean anything bad. For once, I hope we have good news and they find no indication of Crohns whatsoever. Prayers that she is healed of this disease for good!

Tuesday, July 17, 2012

First Day Home..

and it went relatively well. Alexis had some "leftover" stuff in the lower part of her intestines, so she kept running to sit on the potty throughout the day. I'm not sure if she was just reverting back to old habits, because there were several times I had to go in and remind her she no longer had to go #2! She was also more lethargic.. lots of laying around and not so much eating. I made sure she got her liquids in, and her stoma and output look good, so I think I will take her out tomorrow to pep her up a little. I am sure the excitement of just coming home was tiring for her (as it was for me-- I took a 2 hour nap..and I never nap!) She is so amazing!

I seriously cannot believe all of the attention Alexis has received. I keep telling her she is a little internet sensation! I have almost 11,000 page views.. she received over 500 cards while in the hospital AND I just so happened to be scrolling through my facebook feed today, and out of no where I seen a pic of her that I posted a few days after surgery. It had been shared hundreds of times, and liked by THOUSANDS! Not to mention, all of the attention she has gotten from the Reddit community-- it is simply amazing. Alexis is a complete stranger to them, yet they have connected with her and have supported her 100% . I have said it before, but I'll say it again... THANK YOU.

P.S-- Did you guys get a chance to watch the video I posted in the last entry? Kyle contacted   the guy who made it, and he will be sending it out to Alexis. I am so excited!

Monday, July 16, 2012

Post Op: Day 4

7,125 page views??? WOW! It's hard to believe that Alexis' story has reached so many people. I can only hope that it reaches someone that needs questions answered or encouragement regarding ANYTHING related to Ulcerative Colitis (I believe I am a PRO at that topic) or colectomy. Like I said, we are opting for the 3 stage j-pouch, and just completed stage one on 7/12/12. You can email me at tara.n.blackburn@gmail.com ( or you can find me on fb: https://www.facebook.com/tara.blackburn)

My husband and I will be working on a more "professional" blog here in the NEAR future, but I am having a HORRIBLE time coming up with a sleek, catchy name. I would like it to pertain to (obviously) my role as a parent to someone with IBD who had a colectomy. If you can think of anything catchy PLEASE let me know!!

Alexis is doing great! After a week of no eating, she was given the okay to chow down on some actual food today! She ate so much, and her body handled it exactly as it should. It was nice, because her "output" finally became something other than pure liquid.. which meant WAY less emptying!

Kyle and I finally had the oppurtunity to meet with our stoma nurse today. She gave us an entire months worth of supplies, made our first order with the home health company and taught us the ins and outs of changing and emptying out Alexis' ileostomy bag. Alexis was scared and screaming because she thought it was going to hurt, which made the entire process exhausting, but we pulled through and got it done. I managed to accidently touch the stoma several times while switching out the wafers and that was weird (but, who am I kidding-- the entire process is exactly that) but it still wasn't nearly as bad as I thought it would be.

We are on track to leave the hospital tomorrow morning, and neither Alexis and I can hardly wait! We have packed up everything-- (including the almost 200 cards she received while in the hospital!!)

Tomorrow can't come soon enough!!


It's amazing how much support Alexis has got from the REDDIT community-- she is absolutely loving it, and we appreciate it ! It has made this entire experience so much easier. It's mind blowing how much support you can get from absolute strangers! THANK YOU!!!!!

Sunday, July 15, 2012

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 :)

Saturday, July 14, 2012

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!

Friday, July 13, 2012

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!

Wednesday, July 11, 2012

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!

Monday, July 9, 2012

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!)

Saturday, July 7, 2012

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!

Friday, July 6, 2012

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!