It's been so long...

Day after her operation

..and I apologize! With the Phoenix article on Miss Alexis coming out soon, I have got to make sure I update regarding her latest surgery. I am hoping her story reaches thousands of people-- more so those parents who are in the beginning stages of the surgical side of treating their child's IBD. I still manage to get an email about once a week from  parents who stumbled across my blog . It's overwhelming hearing them compare our feelings and listening to them say things that I too had said myself in the beginning of all of this.

So, again.. my email address is tara.n.blackburn@gmail.com. I know I posted it a few entries back, but I wanted to post it again for any new people who come across my blog.

So, here we go.

My husband reading Alexis her cards

Prior to D-Day, I had spoken with Alexis' surgeon and decided to be apart of a study he was conducting. Basically, some surgeons think a bowel prep is necessary, while others do not. The bowel prep itself is awful. NG tube down their nose that pumps their tiny bellies full of medication that eventually flushes them completely out. I remember the nurses bringing in 2 gallons of this crap, and I was flabbergasted.  "Your really going to use ALL of that?!" The hours following that statement were almost as bad as the surgery itself. I went through the details of the actual prep in one of my first few blog posts.. but it was no fun. I was praying that we would be selected to come in on the day of surgery with absolutely no bowel prep (well, no eating after midnight.. but that's easy!). And, we got exactly what we had wished for: no prep! Let me tell you.. it made the thought of Alexis' going into surgery a million times easier. No sense in terrorizing ANY more than necessary.

We arrive at Children's Hospital around 6:30 am on 10/4/12. My husband, Alexis and I head straight up to the surgical wing and wait an hour to be called back to the prep room. Our surgeon came in, went over everything we needed to know (and answered all 5,000 questions I had) then the anesthesiologist came in and went over all his information. Shortly after, Alexis was wheeled away. Again, I was left with a pit in my stomach and had to fight back the tears. It was hard, as letting your child go into ANY operation is scary, but I felt more comfortable than I did the first go round.

This operation was scheduled to take roughly 6 hours or so. Great. TWICE as long as the first one. I felt like I barely made it through the last time, I didn't know how I would manage to stay sane for that long. Kyle and I went off to the cafeteria for some breakfast. We made it back up and waited (and napped) and waited until finally her surgeon came out.

5 days post op

Everything went according to plan, and he even made it out in an hour less than expected. Alexis was doing great and they had absolutely NO complications with her surgery. He explained to us that he moved Alexis' ostomy higher up in the small intestine and she now had a diverting loop end ileostomy instead of her end ileostomy. I would go into detail to explain the differences, but I tend to use random medical jargon that most people don't understand (unless you are a fellow ostomate!) I am hoping to find a picture to include in this entry as seeing it with your own eyes tends to make more sense. Her ostomy previously was thicker, and stuck out about 1 inch from her stomach, now it is about .5 inches in diameter and sits almost flush with her skin. Her surgeon went through all of the same incisions  so no additional scarring. I can almost guarantee that when she becomes an adult, they will be barely visible! They are already pretty small in size. Scarring may mean nothing to you or I, but I don't want her to feel uncomfortable as she gets older if she wants to wear bikinis etc etc. She is beautiful all the way around tho, so hopefully some scarring doesn't bother her.

Back to the surgery..

Alexis was pretty medicated on the day of the operation and the day after. It seems all she did was sleep. I was grateful because I can only imagine how uncomfortable she had to of felt. She was on automatic suction, and had a catheter-- so she didn't move out of her bed until about 2 full days post op. This operation was twice as long as the first, and it seemed to take twice as long for the anesthesia to really wear off.  I made sure she remembered to push her pump pretty often (she was also on a continuous drip) I was doing everything in my power to ensure the pain wasn't coming through.

Recovery wise, things took alot longer than I had anticipated. I went into this surgery, expecting the recovery process we had during the first operation. Alexis went in on a Thursday and released on a Monday morning. Her bowels woke up almost right away and her pain was so well managed she was only on a pain pump the first 24 hours or so. This time around, Alexis had an NG tube hooked up for a week, as well as the pain pump. Her bowels woke up post op day#6 and the NG was removed on day 7 in the morning (thank goodness, otherwise we would have had to do tube feedings) I tried so hard not to rush the recovery process, but honestly, I was going a little stir crazy..and I missed having my entire family under one roof! It was rough on all of us, however, looking back I know we were right where we needed to be.

Now, of course we had to run into some problems. Alexis had been on a strong antibiotic after surgery and she developed a yeast rash ALL over her backside. On top of that, she started running fevers out of no where. We were concerned of infection so the Drs ordered a fever workup which included: a chest xray (to check for pneumonia), a urine sample (to check for a UTI (very common after having a catheter placed) and blood samples to check her white blood cell count (which is an indicator for an infection). Everything came back normal except for her blood samples, but her wbc was only slightly elevated.

Infected IV site. Notice the burns? !

Then, a nurse came in to administer IV Tylenol via an iv port on Alexis' left hand. She had 3 ivs placed during surgery and the were only constantly using 1. Alexis was throwing a fit when they flushed it, however the nurse assured me everything was fine since it "flushed okay". So she hooked Alexis up to her medication, and left the room. Alexis was very upset when the nurse left and I went and closely inspected the site. (it was under the clear plastic bandages-- so I didn't have a good visual of it.. I was mainly checking to make sure her arm wasn't swelling!) No swelling. I could see around the iv tho, and it looked pink and I just knew something was wrong. I called the nurse in and told her to remove the iv. We did and sure enough, once everything was removed, you could see that the iv had been bad (and who knows for how long since it hadn't been used!) Over the next several hours, the injection site filled with puss, her arm swelled up and red splotches covered about 80% of her lower arm, and her arm itself was very warm to the touch. She also developed blisters (tissue underneath had burned, and it made its way to the surface). They were worried that she had a possible blood clot, but the ultrasound crew was so backed up, we were forced to sit and wait. I placed a warm cloth over her arm, and over the next several hours, the redness and swelling went away! A huge welt appeared out of no where the next day too. We continued with the warm compresses, and she was started on another round of antibiotics, and the fevers finally went away for good. I was very angry this happened, but it was a relief to know that the infection wasn't on the inside. Finally felt as if we were making real progress and we could work on getting out of there!

6 days post op. Craft time with little sis!

I really wish I would not have waited so long to update. I am jumbling my brain trying to remember certain details, and I am at a loss. So for now, I think I will call it quits. As I remember, I will come back and edit, or post more details in a later blog. Alexis' surgeon wanted to preform her take down 6-8 weeks from this operation, however, I requested that we hold off until the beginning of January. She has already missed a ton of school, the holidays will be upon us (as well as her birthday and her party!) and my husband and I just can't afford another week of no income.

My husband has an awesome job, and makes more than enough to allow me to stay home with our kids. However, there is no paid time off. He was forced to take an entire week off a few weeks prior to Alexis' surgery, and then he took a week off to be by Alexis' side after the operation. We pretty much blew through our savings during that time. In no way are we struggling, things are just alot tighter right now. It stresses me out because I am used to having a cushion to fall back on, and being so close to the holidays and all.. doesn't help. But we will make it through, Christmas will be amazing, as well as Alexis' SIXTH birthday. Financial woes just seem to follow anyone who is struggling with a chronic disease. I pray that what we are doing for Alexis now, secures her future even more. I hate the thought of her dealing with this for the rest of her life.. I don't ever want her to wonder "How am I going to pay for bills and/or the things I need on top of  medication and/or surgical operation". I would give up everything I had before I let that happen.

Other than that, things have been going great. Alexis is 23 days post op today, and things are great. She is back in school and back to learning her dance routines in drill team! We also learned that we are having ANOTHER baby girl in March, and although I had hoped for a boy.. I am extremely excited. :) Alexis can't wait to hold her and she is extremely excited that she will always be the "biggest" sister :) Life has thrown my family quite the curve ball, but we are back on track now. Once we get Alexis through this next operation, I pray for nothing but smooth sailing and distant memories of IBD after that.

Thanks for checking in. XO

Post Op Day 5 (I think..?!)

My days seem to be running into each other!!

I promise I will update as soon as I find the time. Things have been hectic, and honestly when I am not tending to Alexis-- I am exhausted and just want to sleep. She is doing better and we are hoping things start to improve for her. I have ALOT to write about, so keep checking back!

Thanks for all of the love, thoughts and support <3 p="p">

7 days..

so the countdown begins...

Alexis right before her first practice!

again.


Seems surreal that we are getting ready to go down this journey again! Alexis is doing so well that I wish we could just wait. Life with an ostomy isn't that bad. But this is what she wants, so we are moving forward.

Alexis had her first drill team practice last night. She did so good! She was happy to be out there and she seemed to be glowing with excitement the entire time!! She will miss out on a practice due to recovery time, but I am hoping I can at least get her there to watch (since it will be post op day 6--and if all goes well she should be out of the hospital!)  I am hoping this is something she can stick with and keep up with over the years!

My nerves are starting to set in, but I am trying to keep myself busy. I have a TON of laundry I would like to get done within the week!

and as always, expect more updates in the next week (even more the days following her surgery!)

2 weeks...

..away from surgery. I can hardly believe it.

Seems like its been forever since the initial creation of Alexis' ostomy, but in reality we just passed the 2 month mark. I am thankful for all of the progress we have made, all the medications we were able to give up and for my daughters health back. My only wish is to fast forward through these next few months and these next 2 surgeries.

Alexis' GI appointment went great. Dr Boyle was thrilled with how well she looked and ordered some routine labs to see how her body was maintaining. I explained the problem I discussed in my last post and he wasn't too concerned. He doesn't want to treat it with any type of medication and we will see how it goes after her next surgery. I was pretty happy about that!

Alexis finally got over a pretty rough cough/cold/sore throat viral type sickness (seriously, it seemed like everything rolled into one!) this past week. Her output turned very watery and I was pretty nervous about her becoming dehydrated since everything seemed to pass through her so quickly (more so at school since I couldn't monitor her) but we made it through with no problems whatsoever!

Since my last post, Alexis enjoyed her first trip to the Renaissance Festival! She rode rides, enjoyed various attractions and had the energy to walk the entire time! We did have to make several trips to the restroom, but they were for me :) It was great! (check out the few photos I attached!)

The same day we went to the festival, we found out Alexis will be expecting ANOTHER sister! Three girls... hopefully I can keep my sanity ;)

One last thing: we will be signing Alexis up for Drill Team this week! How awesome is that?! She is so excited!! Practice starts in a week or so, I will keep you guys updated on how she does.

Thanks for checking in!

Tomorrow...

Will be Alexis' first follow up appointment with her GI Dr since before her surgery. I am very excited to see him and share just how great she is doing. For so long, I explained to him I couldn't nor did I want to put Alexis through such a dramatic surgery, but I am so happy we did. I know you have heard me say it over and over again, but I finally have my happy go lucky 5 year old back!

The only concern I will be bringing up to him is the discharge Alexis is having from her bottom (tmi, for most.. I am sure.. but those who are dealing with IBD know that poop talk is NORMAL and expected on a nearly every day basis!! :) !!) Her ileostomy obviously bypasses her rectum, however it is still a living organ and secretes mucus and whatnot. BUT, Alexis' has been bloody since surgery (few drops or so). Not bad AT all, and she only passes it every few days or so, but I am very curious as to how he will treat it. I am hoping it is only temporary as I was so happy to get her off all medications. But we shall see. I think he will be very pleased with her overall progress!!

This weekend we will be finding out the sex of the new baby, as well as taking a family outing to a Renaissance Festival. So exciting! For so long we had to stay clear of anything that didn't have a bathroom in a 3 second walking distance, so it will be nice to be able to go out and enjoy it! Alexis will be able to ride rides, eat whatever food she wants and just ENJOY herself! I am very excited :)

Well, I think thats all I have for today. I will update after our GI appointment for those of you who are interested in what he has to say!

I will hug my kids a little tighter because of this..

I cry every time I hear this song. Although I didn't have to face a battle like the Mother of Ronan, I can relate on many different levels. So heartbreaking.. yet a beautiful song!

As of 8/28/12...

Alexis is officially a kindergartner! She has been doing so well and the anxiety over other children seeing her bag has completely diminished! We started using the mini closed end Hollister pouches, and they are hardly visible whatsoever. :)

However, yesterday she did get a letter sent home for talking to much in class! Here's to a great year full of NORMAL kindergarten problems free of IBD!

Also- Alexis will be included in the December issue of the UOAA's magazine "The Phoenix" so make sure you keep an eye out for it! I worked SO hard preparing the article and I hope you all have the chance to see it!

Been a little while...

But I wanted to update everyone!

Alexis has been keeping me busy, as she is getting ready to start Kindergarten in a few days! She is VERY excited and can't wait to get back to school. She is anxious about going with the ostomy, but I have assured her she will do just fine! We will be using mini closed end pouches, so if one gets too full, she can pop it off and place a new one all by herself. I am worried about her leaking, but the good thing is I live literally right around the corner and could be there in a few short minutes. (The school nurse is only available SOME days, so I don't even want to try and depend on her being there) We will get through it , I am not worried! :)

Alexis and her Gastronauts!

I spoke with Alexis' surgeon and we will be moving forward with procedure #2 on Thursday October 4th! The good thing about this procedure is we elected to be part of a study to see if a bowel prep is necessary prior to surgery..and thank the heavens we have been selected for NO bowel prep! I think the bowel prep prior to surgery #1 was just as hard on Alexis as the actual surgery..so I am very thankful that we get to skip on it this time around. Another plus is we will not be required to come in the day before! I think this surgery will be a million and one times less stressful than the last. I just can't wait to get Alexis through these next 2 procedures so we can put this chapter behind us.

Well, I must go. I have been working so hard on an article for The Phoenix (that will be featured in the December issue) and I find myself rewriting and adding things constantly! Gotta get it perfect as Alexis will be able to read this for years and years to come.

Thanks for checking in!

Bag changes...and leaks!

I apologize for the lack of updates. But, everything has been so "normal" lately, its hard to even find a few sentences to write in order to piece together an entire post! Today, I have something to rant about.

The time between bag changes.

I just cannot seem to get it to hold past day #2. I don't know what it is, but it seems every 2 days it starts leaking and we have to rush to change it. Her stoma is very odd shaped. Longer on one side than the other, and her belly is also more protruded on the tip/right side than it is on the left, so I attempted using the paste this time to hopefully get a few extra days in. (For those who are curious, we are using the Holister brand New Image wafers). It always seems to leak in the SAME spot, so I am hoping this works! The only good thing about changing it every 2 days is that I can make her shower with it all off and give her skin a break!

Alexis is just a few weeks away from Kindergarten. I must start working on allowing her to empty her bag. It seemed we had so much time to practice, and time seemed to have reallllly gotten away from me. I know she will do awesome, but I can't help but feel nervous and scared about this transition. I just hope we can start getting decent wear time in between bag changes so I don't have to worry about leaks! She is very excited to go, so I won't burden her with any of my worries. We will get through this and she will do great!

Follow up with the Surgeon yesterday and..

Thought I'd share the little bit of *new* information I have!

Alexis had her follow up with the surgeon yesterday.. We discussed the next step and I explained to him that I would love to have both procedures done prior to March. He took a look at Alexis and seen how well she was doing and said that could 100% be done. He said if all went well, he would be comfortable completing her j-pouch by the end of the year! I wish we could finish the process with just one more procedure, but I know the 3 step will ensure that everything is healed and working correctly before we take the big step into connecting everything. I have no plans on rushing her, and will encourage her to let me know when SHE is ready. The surgeon said we could be back in as early as mid September. Not sure if I am 100% comfortable with going in that soon since Alexis will be starting Kindergarten at the end of this month.

I am sure there will be people who do not agree with how quickly we are moving forward, but this is what Alexis wants and what her Dad and I think is best for her. We want her to feel normal (both inside and out) as quickly as possible. She has expressed to us on MANY occasions that she is happy that she doesn't feel sick everyday, but she can't wait to get rid of her "big red spot".

So, keep the *encouraging* words coming, we could sure use them!